4. WELLNESS PROMOTION POLICY:
TOWARD A MORE EXPLICIT
CONSIDERATION OF THE
POLITICAL CONTEXT
The chapters in part 4 are grouped together because each addresses the role of the political context as an influence on wellness promotion, whether as impediment or facilitator. As an impediment, the political context has stalled wellness promotion efforts in the areas of adolescent sexuality, safety in the agricultural workplace, women's health, and HIV/AIDS. Hofmann (chapter 20) addresses the first of these topics in a detailed analysis of the data relating to adolescent reproductive health and pregnancy. Noting the combination of biological, social, cognitive, developmental, and cultural factors that confound teens' best intentions with respect to sexual activity, she points out the insufficiency of the abstinence-only approach currently favored by the political climate. Similarly, Schenker (chapter 21) argues that a widely held perception of agricultural employment as salutagenic interferes with the establishment of effective legislation to protect farmworkers' health. Stanton, Danoff-Burg, and Gallant (chapter 22) and Villablanca (chapter 23) discuss ways in which the political/cultural climate has stunted progress in women's health. Specifically, the historical bias toward conducting research with male subjects and the general absence of women within the circles of power have served to delay significant advances in promoting wellness among women. With respect to HIV/AIDS, Waldo and Coates (chapter 24) relate the failure of HIV/AIDS prevention to live up to its promise to political and cultural biases that have thwarted the translation of scientific knowledge into effective intervention (e.g., the current
19. STRATEGIES FOR REDUCING
YOUTH VIOLENCE
Media, Community, and Policy
Lawrence Wallack
INTRODUCTION
Violence scars the contemporary American landscape. There are more guns, more violent crimes, and more murders per capita in the United States than in any other industrialized country.1 Violence is like a virus that infects and weakens the essential relationships and structures that bind our society. Individuals, families, schools, work sites, and entire communities are devolving toward a state of disease as their basic sense of security and well-being is undermined. Fear, mistrust, hopelessness, and social isolation spread with this violence virus and perpetuate some of the very conditions that create and feed the epidemic. Donna Shalala, secretary of the Department of Health and Human Services, notes, “Of all the health and human service challenges we face, perhaps one of the most devastating and, ironically, the most preventable is the epidemic of violence sweeping across this nation.”2
Youth-related violence, in particular, is a reflection of the tensions, conflicts, hopes, and fears pervasive in our society. That so many youth are injured or killed by their peers and by adults signals a tragic crisis of morality and justice. It forces us, as individuals and as a society, to reflect on how we value children and youth; to consider how we allocate resources and assign priorities; to ponder racial, ethnic, and cultural factors; to confront basic constitutional issues such as the presumed right to carry firearms; and to search our souls about what is right and just.
In California, violence prevention efforts have increasingly focused on reducing the widespread and easy availability of handguns—an essential
A PRIMARY INDICATOR OF VIOLENCE
There are many indicators of violence, but perhaps none conveys a greater sense of urgency than homicide rates. In 1995 there were 21,597 homicides in the United States, or roughly 59 people murdered every day.3 Homicide accounted for 2,555 deaths of those under age 18 in 1994 and was one of the top two causes of death for children and young people aged 5 to 24.4
In California, there were 3,699 homicides in 1994. Homicide was the leading cause of death for males aged 15 to 24 and the second-leading cause of death for those in the 10- to 14-year age-group. For females, homicide was the second-leading cause of death in the 15- to 24-year age-group and the third-leading cause of death for girls aged 10 to 14. In 1995, there were 1,565 homicide deaths in California for those under the age of 25.5
Figure 19.1. Homicides for youth under 21 years of age, California (1985–1995). Source: California Department Of Health Services.
Figure 19.1 shows that from 1985 to 1995, the overall number of youth homicides increased 106%, slightly down from peaks in 1991 and 1993. During that same period, deaths due to cutting/piercing declined 28%, while firearm-related homicides increased 189%.6 Overall, 76% of homicides involved firearms; of those, 88% were handgun deaths.7,8
The increase in youth homicide is especially alarming because overall homicide rates have been declining.9 A violence expert has noted, “Youth are now killing youth at rates far higher than any other time this century,”10 and it is widely accepted that the increase in deaths is attributable to guns.11–14 Overall, the United States has the highest rate of firearm death for children aged 1 to 14 in the industrialized world—a rate almost 12 times higher than that for children in the other 25 countries combined.15 In 1995, 35,957 people died from firearm injuries in the United States, with suicides accounting for 51% of these deaths and homicides for 44%.16 Firearm deaths for youth, however, are much more likely to be linked to homicide than suicide.
Research indicates that ownership of a gun is more likely to put individuals and their families at risk for violence than it is to provide protection from it.17–19 When guns are primarily in the hands of youth who live in a hostile environment, who lack restraint, and who participate in a subculture that accepts violence as a basic means for resolving conflict,
HANDGUN POLICY AS PREVENTION STRATEGY
There are an estimated 192 million to 216 million firearms in the United States.21,22 Handguns are the firearm of choice for homicide: “While handguns make up only about one-third of all firearms owned in the United States, they account for 80 percent of the homicides committed with a firearm.”22 Handguns are relatively cheap and easy for youth to obtain, and their availability increases the risk of homicide and suicide for urban youth.23 Guns may not cause violence, but they do make violence more lethal and allow traditionally nonfatal incidents to become fatal. Further, these incidents can set into motion a cascade of negative effects across the community by creating a spiral of revenge and retribution. Removing guns from the violence equation may not reduce the frequency of violence, but it will reduce the mortality from violent encounters.
It is widely accepted that violence is an enormously complex issue with many causes and potential solutions.24–26 (Accordingly, the VPI has developed a broad policy agenda that includes other approaches, such as increasing social and educational resources for youth.)27 Nonetheless, taking handguns out of violence is a significant step to creating a more supportive environment in which other prevention programs have a better chance of success. Also, getting handguns that are killing youth out of the picture is an important way to get people involved in the larger issue of violence prevention. In California, this strategy is working.
June 4, 1997, was a historic day for California. A front-page story the next day in the Los Angeles Times reported, “In what would be landmark legislation, the Senate and Assembly approved separate bills Wednesday to ban the manufacture and sale of cheap handguns known as Saturday night specials and junk guns.”28 The two bills were later reconciled, and a new bill was passed by both bodies of the state legislature. This new bill was sent to the governor for his signature. Sometimes referred to as
One day prior to the votes on the junk-gun ban in the state legislature, the voters of Livermore, a suburban community in the San Francisco Bay Area, passed Measure H, banning the sale of junk guns in that city. In fact, the state assembly approved the junk-gun ban at 11:30 p.m. on the night of the Livermore vote. The senate passed its version the following day. Some advocates thought that the Livermore victory influenced the vote in the state legislature. The referendum, the first public vote in California on junk guns, was called to ratify the decision of the city council, which had passed the ordinance on a 3-to-2 vote.
The passage of a proposed statewide ban on junk guns and the victory in Livermore marked the culmination of an intense period of handgun policy activity in California that has continued to spark the introduction of local ordinances. This period of dramatic action began in January 1996, when the city council of West Hollywood proposed an ordinance banning the sale of Saturday night specials. The ordinance passed in May and went into effect in July. On November 15, 1996, the Los Angeles Superior Court upheld West Hollywood's ban. This success opened the door for many other communities; by the summer of 1997, 52 cities and six counties had passed local ordinances placing limits or additional requirements on firearm sales.30 Thirty-four of these were bans on Saturday night specials.
Passing local ordinances to limit the availability of handguns had thus become a trend when five years earlier it had seemed an unlikely possibility. No one at that time would have suggested that a handgun ban of any kind might pass the state legislature. The transformation from
THE CALIFORNIA VIOLENCE PREVENTION INITIATIVE
The VPI was introduced in the spring of 1993. Conceived by The California Wellness Foundation (TCWF), the VPI is a five-year, $35 million grant-making program designed to reduce violence among youth up to age 24. The VPI includes multiple components, including policy development, community action programs, leadership development, public education, and research.31
Interestingly, the VPI was conceived in a challenging environment in which the supports for those most at risk for violence were eroding, in part because of a stagnant California economy and an increasing public fear of crime, violence, and immigration. April 1992 had witnessed civil unrest in Los Angeles following the Rodney King verdict, the state budget was tight, and crime and violence were framed primarily as criminal justice problems that should be addressed by harsher penalties, especially for youth. The seeds of a growing social conservatism would soon sprout in the form of ballot initiatives and public policies limiting health and social services for undocumented immigrants, requiring 25-year to life terms for three-time offenders, and eliminating affirmative action. In an ironic reversal, the prison budget briefly exceeded the budget for higher education.
Despite this adverse political climate, TCWF decided to make a significant commitment to violence prevention, including the development of controversial policies to limit the availability of handguns. This commitment was, in part, a response to the rising trend of death and injury from violence in California (gunshot homicides had increased sharply since 1985 and were on their way to a 204% increase by 1993),6 widespread public concern about violence, and the increasing acceptance of a public health approach to violence prevention. The commitment also
In considering its first grant-making initiative, TCWF commissioned five white papers on topics identified by a series of community focus groups conducted around the state in the spring of 1992. Violence prevention was one of the top concerns expressed, and the violence prevention white paper became the basis for a national advisory committee meeting in August 1992.27 This meeting brought together a diverse group of 40 individuals, including former gang members, law enforcement officials, clergy, trauma physicians, community activists, policy advocates, and researchers. Together this group crafted the essential elements that became the Violence Prevention Initiative.27 The diversity at this first meeting became a hallmark of the VPI. The initiative continues to build and support broad-based coalitions that “include unexpected allies and speak with many voices from many perspectives.”
In October 1992, TCWF's board approved the VPI and committed $25 million for an initial five-year effort. Within a few months, a public education campaign and new community program sites were added, increasing TCWF commitment to $30 million. Eventually, through the added support of several other California foundations, the VPI became a $35 million project. The structure of the VPI includes several components designed to work together to reduce youth-related violence in California. Some of the major components are discussed in the following.
The Policy Program
The VPI has three ambitious policy goals designed to promote a favorable environment for all violence prevention activities:
Goal 1: Shift society's definition of youth violence from a law-enforcement-only perspective to include a public health perspective that addresses societal and environmental influences contributing to youth violence.
Goal 2: Advocate for public policies that reduce access to alcohol and other drugs that contribute to youth violence.
Goal 3: Advocate for public policies that reduce firearm injury and death among youth.
The Pacific Center for Violence Prevention (PCVP), established by a TCWF grant to the Trauma Foundation located at San Francisco General Hospital, has the primary responsibility of coordinating activity toward the policy goals, particularly on the issue of handguns. It also serves as the information and strategic policy center of the VPI. In this capacity, the PCVP provides other VPI components with a range of support activities, including policy and media advocacy training and consultation, an electronic communication network, market research, monitoring of news media presentations of violence, an information resource center, technical assistance for community collaboratives, gathering of expert opinion, legal advice and assistance on crime and violence policy, publication of position papers, education of policy makers, and organization of an annual meeting for all VPI participants. The PCVP also coordinates the Academic Fellows Program, which seeks to increase the number of public health professionals committed to working on violence prevention.
A grant to conduct the public education campaign was awarded to Martin &; Glantz, a national consulting firm located in northern California and specializing in grassroots organizing and communications strategies involving public policy issues. Martin &; Glantz has developed two major public education campaigns: “Prevent Handgun Violence Against Kids” and “Resources for Youth: An Honest Dialogue About Strategies to Prevent Youth Violence.” The firm also developed “Youth Want You to Know,” an innovative effort to facilitate the involvement of young people in the policy debate. The primary emphasis of the public education program is to develop an infrastructure of opinion leaders throughout California that will actively support policies to reduce youth violence.
Community Action Programs
The California Wellness Foundation also awarded grants for community action programs (CAPs) serving diverse populations in communities extending from Mendocino to San Diego (Figure 19.2). Compared to the rest of California, the areas served by CAPs are much more likely to include census tracts with African-American, Latino, and Asian/Pacific Islander populations. Also, these communities are marked by greater population density, higher school dropout rates, more people below the poverty level, and higher levels of unemployment.32 The 16 (originally 18) CAPs provide youth-related program services, such as conflict resolution and peer mediation training, leadership and self-esteem development, cultural awareness, recreation, and education.27 More generally,
Figure 19.2. Community action programs funded by The California Wellness Foundation.
The Leadership Program
The Leadership Program is designed to recognize community leadership, provide resources for leaders and youths, and support professional training in three ways. First, the Community Leader Fellowship Program gives annual awards to 10 individuals, each with an established track record in violence prevention. These remarkably diverse and highly experienced community fellows receive opportunities to increase their advocacy skills; in addition, each fellow is required to identify and mentor two youth leaders. Second, the Academic Fellows Program seeks to increase the number of health professionals committed to violence prevention and provides opportunities for fellows to develop new research, advocacy, clinical, and policy development skills. Third, each year the California Peace Prize honors three outstanding individuals to provide public recognition of the highest level of achievement in the prevention of youth-related violence.
The Research Program
The California Wellness Foundation recognized that there were significant gaps in our knowledge of violence that needed to be filled by scientific
A PUBLIC HEALTH APPROACH TO SOCIAL CHANGE
The conception of violence as a public health issue put forth by the Centers for Disease Control and Prevention provided a way for TCWF to justify its significant involvement in this potentially controversial and contentious area of public policy.33 The adoption of a public health approach provides the VPI with a general framework for engaging the issue of violence. This includes (1) a strong commitment to values based on social justice concepts, (2) advocacy of public policy solutions, (3) use of a scientific and applied research base, (4) mobilization of a broad range of constituencies, and (5) strategic use of the mass media. These were key ingredients in the VPI recipe for successful social change.
Pursuing Social Justice
Public health is the blending of science, advocacy, and politics in the context of community values to improve health.34 The mission of public health is to “fulfill society's interest in assuring conditions in which people can be healthy.”35 This means placing a primary focus on prevention rather than treatment and on education rather than punishment. The public health approach to violence uses epidemiological methods to assess the distribution of the problem as it varies geographically and within populations in order to identify risk factors, it applies social and behavioral science research to design and assess interventions and inform
Inherent in the public health model is a clear commitment to a set of values linked to fairness, equity, participation, and social justice.38 Virtually every public health problem varies according to social class—the less well-off a group is, the fewer its social and physical resources, the poorer its health status.39–41 Violence is no different. The primary risk factor for violence is poverty. In an extensive review on violence and youth, the American Psychological Association concluded, “[I]t is the condition of social and economic inequality in which many ethnic minority youth live—and not their ethnicity—that places them at increased risk of becoming victims of violence.”24
Another characteristic of the public health approach is that it addresses the multiple layers of causality of social and health problems. The model not only calls for efforts to strengthen the ability of individuals to make good health choices but also advocates policies to address the social inequalities that put people at risk. Individuals and their behavior are seen as inextricably linked to a broader social and physical environment; ignoring these environments and focusing exclusively on personal behavior inevitably creates inadequate approaches to public health problems.42 In terms of violence, the public health approach suggests (1) a wide range of education and training programs aimed at strengthening individual and community resources; (2) specific policies to reduce economic inequality, reduce discrimination, and improve life circumstances for those most at risk; and (3) limits on the availability and design of guns and limits on the availability of alcohol—two major contributors to the frequency and lethality of violence.36,43–47
Addressing the adverse social conditions that contribute to violence requires a progressive view of society that links group disadvantage to social factors. This very link separates basic conservative punishmentoriented policy positions from more liberal prevention-oriented policy positions. As Lakoff explains, “The logic of conservatism locates so-called ‘social’ problems within people, not within society.”48 In the conservative view, programs that try to change social conditions in order to limit crime and violence are fundamentally misguided because they do not focus on the “real” problem—a moral failing of the individual. Building more prisons and instituting tougher penalties to punish criminals is, from a conservative point of view, the appropriate place to focus.
By contrast, the VPI's basic concept of shifting our societal understanding of youth-related violence away from a primarily criminal justice orientation toward a public health focus entails an explicit recognition of a social justice perspective. This is not a complete rejection of punishment; indeed, the public health model recognizes the role of criminal justice in controlling violence.33 However, in the criminal justice view, “prevention” is believed to occur by threatening punishment (deterrence); in the public health model, prevention is believed to occur by strengthening the personal and social resources for the groups most affected.
Setting Clear, Specific Policy Goals
Public health approaches often begin from the perspective that it is not possible to be healthy in an unhealthy environment.49,50 Public policy is a means of creating healthy environments. Clear policy goals also allow people to have a shared understanding of what they are trying to achieve, and they provide a basis for evaluating activities and resource allocations. The essential question is, How will this action help advance our policy goal?
Growing out of the firearm policy goal were the following objectives:
- Banning Saturday night specials (also referred to as “junk guns”)
- Promoting local authority for firearm policy
- Establishing regulatory authority for the manufacture of firearms under the federal Bureau of Alcohol, Tobacco, and Firearms
- Making the carrying of a concealed firearm a felony rather than a misdemeanor, to be consistent with penalties for concealing other weapons, such as knives
Each of the firearm objectives was strategically determined. Banning Saturday night specials capitalized on a popular issue with broad support in public opinion polls that cut across liberal-conservative lines. Even gun owners supported limits on these handguns, which were seen to be of poor quality with little legitimate use for legal purposes.51 Promoting local authority was part of a strategy borrowed from the tobacco control movement in California. Because of the difficulty in getting any state legislative activity on the issue of secondhand smoke, these groups had taken the issue to the local level, passing ordinances in more than
The policy objective to establish a federal regulatory authority for the manufacture of firearms was a way to link the California handgun policy agenda to a national issue. The final policy objective, to make carrying a concealed weapon a felony, built a bridge to the law enforcement community, which strongly supported this policy.
Translating and Applying Research
Advocacy is inevitably based on the conviction that a significant wrong must be righted and is often propelled by a sense of moral outrage. The gun death of one parent's child may be enough to transform that parent into a tireless gun-control advocate for a lifetime. However, scientific research can help to establish the broader scope of the problem and inform possible solutions. Research is equally important in communicating with policy makers. And because crime, violence, and gun policy are controversial public issues with powerful advocacy groups promoting different solutions, it is particularly important to be able to marshal research to counter the claims of the opposing side.
The California Wellness Foundation was influenced from the outset by research highlighting the problem of youth violence and the role of guns as a major cause of death. There was a strong epidemiological knowledge base about the level of youth violence. The research clearly showed that youth violence had increased in recent years, that the violence had become more deadly, and that the reason for the increased lethality was guns. State and federal data sources, as well as specific research studies, provided compelling evidence from which TCWF could
Literature and Database Reviews The strategic use of existing research by the PCVP, complemented by specific compilations from raw data, provided important legitimacy and credibility to the focus on handguns as an important issue in the prevention of youth violence. It also allowed others working on the issue to have access to key findings. The policy papers and fact sheets were based on a large scientific literature that was often difficult to access. This information was effectively “translated” for popular use by VPI grantees and later disseminated through the public education campaign to opinion leaders, policy makers, and the general population as well.
Literature and database reviews provided an early empirical foundation for the significant educational effort that was to unfold. One PCVP policy paper, for example, presented the public health approach to violence and reviewed studies on firearm-related suicide and homicide.52 The paper discussed legal and regulatory issues at both the state and the federal level, reported findings regarding the cost of firearm injuries, reviewed a range of policy issues, and put forth specific policy recommendations. This policy paper and two others on related topics were widely circulated within the VPI and more broadly to opinion leaders statewide.
One of the most important “data bites” emerged from an analysis of California records by the PCVP. Although it was clear from the start that firearms were a leading cause of death for youth in the state, a review of basic data indicated that handguns were the leading cause of death for those up to age 19, greater than motor vehicle crashes, drugs, or disease. This important piece of information would become the linchpin of public education efforts and a significant tool in shaping the public conversation about violence.
Another product of PCVP literature and database reviews was a series of well-documented fact sheets that could be used by advocates and journalists. For example, one fact sheet that was part of a “local action kit” provided concise statements and scientific documentation supporting the idea that a gun in the house actually increased rather than decreased the likelihood of becoming a victim of gun violence. Other fact sheets focused on the enormous hospital costs associated with firearm injuries and the effectiveness of gun safety features that could be required by law.
Market Research Market research techniques, like focus groups and public opinion polls, were used to assess public views on violence. Basic ideas were first tested in a series of small focus groups and then further assessed in statewide surveys. This type of research served three functions: (1) It provided a “hook” for gaining media attention and thus contributed to public education, particularly for opinion leaders attending to the news media; (2) it provided intelligence for strategic planning; and (3) it provided local advocates with site-specific data regarding local attitudes on various handgun policy options.
The initial announcement of the VPI was accompanied by the release of a statewide poll on perceptions of violence and approaches to prevention in California. The public opinion poll was explicitly used to enhance the newsworthiness of the announcement on the initiative. This strategy for using polling data was repeated several times and successfully generated news coverage, thus helping to create a supportive information environment for the VPI.
Focus group and public opinion data also provided critical strategic insights for planning public education efforts and identifying policy options. For example, the data showed that people were not aware that handguns were the leading cause of death for children in California. Furthermore, when people became aware of this fact, their level of support for policies to limit handgun availability increased. Also, the data showed that people differentiated between long guns—and firearms in general—and handguns relative to policy options. Thus, policy options needed to be worded accordingly. Other important information on likely supporters of various policies was used to tailor paid advertising buys to reach those most likely to respond to the educational messages.
Polling data for specific communities allowed local groups to provide policy makers with highly relevant information. This information proved interesting and useful to policy makers and opinion leaders and increased the credibility and legitimacy of those providing it. One person noted, “Access to local data gave people the courage to argue more strongly for what they needed in their communities. Polls alone are not enough—it takes a constituency to really use this information.” Also, community advocates were linked through the data with the broader statewide effort. One local advocate explained, “We used the poll data. We could talk about guns, but it was really the statistics and information that came from places like the PCVP that impressed people.”
Epidemiological and Legal Research Other research was funded to provide information that could help advance the firearm policy goal. The most important research was that of Garen Wintemute, a physician/epidemiologist at the University of California, Davis. Wintemute had been applying an epidemiological approach to violence for years and had focused on the loading docks of the gun manufacturers as a source of the problem. In other words, Wintemute traced a large part of lethal violence to guns and then sought to find out which manufacturers were producing the guns that caused the deaths. Wintemute wanted to track the problem back to its source and close down the loading dock. His approach was reminiscent of that of John Snow, the father of epidemiology, who, more than a hundred years earlier, stopped a cholera epidemic by ripping the handle off the Broad Street pump that was supplying contaminated water.
Wintemute found that in 1992 six companies, all located within a small radius in Southern California, produced 685,934 handguns, or 34% of all handguns made in the United States. These companies, dubbed the “ring of fire” by Wintemute, produced 80% of all Saturday night specials.53
Wintemute's research had a profound effect on highlighting the importance of handgun policy as an essential strategy and on engaging local groups. The Ring of Fire report was a significant event in the VPI because it helped people understand guns as a local issue. Everyone already knew that there were far too many guns in the community and that they were too easy to get, but the report made people wonder whether guns were being “dumped” into poor communities of color. If that were the case, it was now clearer where the guns might be coming from. One person explained, “People began to see a tangible enemy instead of constantly feeling surrounded by a vague sense of faceless danger.”Ring of Fire provided an opponent that might be profiting from the flood of guns and death that was plaguing these communities. The message found an even broader audience when the Public Broadcasting System's television program Frontline used Wintemute's research as the basis for “Hot Guns,” a one-hour documentary that was partly supported by TCWF.
Another important study was done by Eric Gorovitz, legal director of the Trauma Foundation. Gorovitz reviewed the issue of whether local communities could legally regulate firearms. His law review article indicated that total state preemption of local authority was a myth that was not substantiated by the legal codes. Although local governments were
Gorovitz's research was not funded by TCWF. It is, nevertheless, a powerful example of how VPI resources leveraged other efforts. Much work that might not have been done, or that would have found little or no audience had it been done, had an impact because of the supportive context provided by the VPI. This principle of leverage would play out many times over on many different levels during the course of the VPI.
Organizing, Supporting, and Expanding
the Constituency
Implicit in the VPI's far-ranging policy goals was the mission to develop a statewide network of advocates that could be mobilized to advance violence prevention policy related to youth. This was particularly important for handgun issues, which are emotionally charged and highly controversial. Also, the opposition is well funded, politically sophisticated, and well organized, and refining their arguments and strategies over many years has made the pro-gun groups effective in achieving their legislative goals. Therefore, building a strong violence prevention movement required engaging the CAPs and other VPI grantees, coordinating the existing as well as the new gun control groups emerging around the state, and expanding the constituency by mobilizing additional opinion leaders. It also required ensuring that all grantees had access to a wide range of support materials on policy and media advocacy; legal, epidemiological, and public opinion research; and model local ordinances.
Engaging the Broader VPI The funding of CAPs as part of larger community collaboratives with broad representation provided the basis for a statewide network of advocates. Also, community fellows and academic fellows were situated around the state. However, the handgun policy agenda was not necessarily shared by the other components of the VPI.
Building trust took many forms, including education through the wide range of materials that were available from the PCVP and the “Prevent Handgun Violence Against Kids” (PHVAK) campaign. Fact sheets and policy papers provided a basic understanding of the issues, and events such as annual meetings for all VPI grantees, special meetings for the CAPs, and policy and media advocacy training sessions provided opportunities for building personal relationships and developing new advocacy skills.
Engaging the broader VPI in handgun issues proved a difficult task, but an intensive effort was made to gain support. The PCVP and the public education campaign presented the important research in this area and highlighted the links between handgun availability and local concerns. The PCVP also provided extensive informational materials through its quickly expanding resource center, Web site, and technical assistance. Youth involvement was a primary concern for the CAPs, and PHVAK provided materials such as the “Youth Want You to Know” packets, which provided opportunities for youth to get involved in the policy debate through circulating petitions and writing letters about gun violence to legislators and newspapers. A 1995 statewide video conference was a seminal event in this process, creating an opportunity for VPI grantees to participate in the handgun policy debate with other important leaders in their communities.
In August 1996, the CAPs attended a retreat and agreed to work as an integrated group over the short term to support banning the manufacture and sale of handguns while also working on the longer-term goal of increasing violence prevention resources for youth. This was a significant shift in the support of the CAPs, and it occurred for several reasons.
Creating a Firearm-Strategy Network While many of those in the VPI had no strong initial commitment to gun policy, there were groups around the state, including new groups funded by TCWF, whose primary concern was the easy availability of handguns. Shortly after the VPI was launched, and as a result of the firearm murders of eight people at a law office in San Francisco in July 1993, the Legal Community Against Violence was founded. This group provided pro bono legal assistance to local governments who were interested in passing ordinances and produced a handbook on developing such local ordinances.55 In addition, the California Police Chiefs Association, another key group linking law enforcement with some of the VPI objectives, published a position paper supporting limits on firearms.56
The League of Women Voters, the Parent Teacher Association, Women Against Gun Violence, and Orange County Citizens Against Gun Violence were among the other groups now getting active in the effort to educate policy makers about the problems associated with cheap, easily available handguns. These groups had lots of information, lots of
A new network formed to capture the energy, experience, and expertise of those concerned about handgun availability. Existing groups and the new organizations that were popping up in different parts of the state joined together as a firearm-strategy network to air issues and pursue common goals. The network shared intelligence, monitored the latest developments, kept everyone updated, and used its expanding connections to participate in the policy process. The network agreed on priorities, identified specific policy makers as targets for change, divided up workloads, and followed up on assignments. It also linked up with local efforts, such as the Measure H campaign in Livermore, and, when possible, provided expertise and resources.
The leadership skillfully created an environment in which competitiveness and egos were put aside in the interest of the larger goal of saving lives. Prior to the VPI, few organizations had existed to inform and educate California policy makers about the role of handguns in violence, and the ones that did exist, while on the same side, were often in a competitive relationship. As one advocate put it, “In the past we talked, but didn't share.” Now there were many voices united to provide the same message.
The network included gun policy experts from both northern and southern California. One expert explained that “there were many important pieces in the gun control puzzle, but the network was probably the most important piece.” Various groups participated, some of whom had no desire to be publicly identified with each other. Some of the groups carried considerable political clout, and other groups were developing important legislative relationships so that “when things came up, people knew who to call.”
The network was initially coordinated by the PCVP as a means for sharing the increasing body of information regarding handgun violence, but it soon became apparent that the network could be moving into policy areas that might cross the line of what constituted appropriate participation by nonprofits whose sole funding came from private foundations. At that point, the PCVP representatives no longer participated as part of their PCVP jobs but shifted to other funding sources where there would be no conflict. This approach reflected a growing sophistication within the movement, as groups that might have forgone participation in policy efforts in the past now created alternative structures so they could continue their involvement.
While TCWF did not fund the network, it did, as one person explained, “construct the table around which people sat.” The VPI public education campaign and other policy development activities had increased the visibility and urgency of this issue. The California Wellness Foundation helped create a climate in which the goal of reducing handgun availability to youth—a goal supported by those in the network and opinion leaders around the state—could better resonate with policy makers. While the activities of the network were mostly carried on behind the scenes, the impact appears to have been significant. Just a few years ago, advocates had worked largely in isolation, and now they were part of a broader statewide social movement at the core of which was the network. One advocate noted, “As the size of the network grew, so did the movement.”
Mobilizing Opinion Leaders Another key part of “growing and feeding” the constituency was the opinion-leader communication program, which was part of the PHVAK public education campaign. This campaign was a sophisticated effort designed to “develop and implement a multimedia public education campaign focused on voters and opinion leaders with the goal of reducing the availability of and access to firearms by youth.” In addition to the development of a statewide infrastructure of opinion leaders, it involved extensive message development and testing through focus groups and public opinion polls, strategies to enhance the visibility and importance of handgun violence through the news media, and a video conference to link various parts of the state to the campaign. Each aspect of PHVAK relied on careful research to develop strategy and provide assessment of the value of different tactics.
The opinion-leader effort created a statewide infrastructure for advancing policy for reducing youth access to handguns. The purpose was to increase the capacity of opinion leaders to communicate on violence prevention and handgun policy and hence increase their comfort with these issues. The opinion-leader strategy involved identifying an audience who was supportive of the VPI policy positions but who might not have the knowledge, tools, or confidence to participate in the public debate and then providing those leaders with the necessary information to make it easier to participate in the violence prevention discussion. Many of these opinion leaders have the ear of policy makers,
The cultivation of the opinion-leader group included disseminating policy updates on issues related to handgun violence. “Communities on the Move,” developed with the Legal Community Against Violence as part of PHVAK, surveyed cities and counties in California to determine the extent of local ordinances to limit access to guns. Information primarily developed by the PCVP was sent out in a PHVAK mailing that provided survey results and updates on banning Saturday night specials and on other policy options. This was the kind of educational information that opinion leaders could give to others in their organizations and also provide to policy makers and friends.
The opinion-leader database proved to be an especially important tool for organizing supporters. It includes approximately 12,000 people who receive mailings that provide a wealth of information, encourage networking, and encourage opinion leaders to increase their participation on issues central to prevention. This database includes 20 categories of opinion-leader types (e.g., business, education, health, and law enforcement) and approximately 7,000 “prime” records. This separate “prime group” within the database represents an important opinion-leader constituency made up of people who responded to previous mailings or attended a video conference.
Developing Media Strategies to Set
the Agenda and Shape the Debate
The mass media set the agenda and shape the public discussion regarding potential solutions to social problems.57,58 The media tell people not only what issues to think about but also how to think about those issues.59 Youth violence is a highly visible issue and commands extensive coverage in the news media. Unfortunately, this coverage tends to sensationalize
Importantly, information in the media is disseminated via a two-step model in which information moves from the media to opinion leaders to the broader public.61 Advocates' media strategies, then, seek not to reach all people but rather to increase the saliency and legitimacy of an issue, to inform and reinforce opinion leaders on that issue, and to directly reach the policy makers. Because these two groups pay special attention to the news media, it is important to augment a public education campaign with various events, direct-mail communication, and news coverage of the issue (earned media).
Paid Television Commercials The first task of PHVAK was to focus the youth violence debate on youth as victims rather than just as perpetrators and to educate people that handguns are the leading cause of death for youth in California. From this core position, a “reframing” of the problem could begin, and PHVAK could move into the need for policy options to limit handgun availability. A key component of the reframing process was the use of paid television commercials.
Public education campaigns usually have limited resources to accomplish substantial goals and thus must be very strategic in their planning. Although PHVAK could not reach every person in California, it sought to mobilize a critical mass of supportive people to become more involved. In addition, a highly visible media campaign would reinforce the efforts of the opinion leaders and create a more favorable public climate in which it was easier for them and others to speak out. Paid media served several purposes: They provided credibility for the broader educational campaign among the media, supported and punctuated key periods of campaign activity, and, in the markets where the ads ran, increased public awareness that handguns were the leading cause of death for youth, that there were too many handguns, and that something must be done. After extensive message development, three spots were created for the first year. One spot explained that a handgun was produced every 20 seconds and that they were being used to kill kids, while a second stressed that handguns were the leading cause of death for youth. A third spot provided a plea from two mothers who had lost
Television time for the ads was purchased in Los Angeles and Sacramento and placed to reach populations identified through polling as being most likely to support policies to limit handgun availability. The first six-week buy cost $1 million and reached 85% of television households in the market. Each spot had a toll-free number (800-222-MANY), and people who called received a Citizen Involvement Kit, which included fact sheets about guns and postcards to be sent to policy makers that asked them, “What are you doing to prevent handgun violence against kids?” Evaluation results indicated that there was a significant increase in the number of people identifying handguns as the leading killer of kids, and more than 10,000 Citizen Involvement Kits were distributed. Overall, 62% of those calling the 800 number said that they supported stricter laws, and 19% sent postcards. This indicated that the campaign was successful in reaching the anticipated audience and accomplishing the behavioral objective.62
The Video Conference A defining event of the public education campaign to energize people about the handgun issue was a video conference held in February 1995. This event brought diverse elements of the community together around the single issue of the availability of handguns to youth. Community organizers were hired to ensure that a broad spectrum of the community would be represented, and the video conference was downlinked to all the sites where CAPs were located. Panels to discuss next steps in each location immediately followed the video conference and included policy makers, violence prevention professionals, members of law enforcement, and health care workers. This was followed by regional meetings four months later to build on the new relationships that had been established.
In the southern California city of Pomona, for example, the police chief, mayor, leaders from the business and education communities, and the local CAP all attended the video conference. It was here that the idea for a local junk-gun ban was conceived. The police department later requested information from the 800 number. By May 1997, with a lot of community support, Pomona had a junk-gun-ban ordinance as well as an ammunition registration law. Others attending the video conference
Though the video conference was not without its critics, it was a turning point. It successfully brought together key people and gave participants a sense that they were part of a larger movement. Later, when ordinances were being considered, many local people had easier access to their policy makers because they had met them at the video conference. The event was also crucial in framing limits on handgun availability to youth as a mainstream, inclusive issue. Now people were talking not just about the problem but about solutions as well. One southern Californian said, “[Gun control] was not on the agenda before the video conference. It made it real, it made it immediate, it made it important, it made it a battle.”
Media Advocacy Another element of working through the mass media to shape the debate and advance handgun ordinances was the use of media advocacy.37 The Berkeley Media Studies Group, as a subcontractor to the PCVP, trained most VPI grantees in media advocacy and worked with many on an ongoing basis. The media advocacy training complemented the public health focus and helped groups and individuals to frame their violence issues from the policy rather than the personal perspective. In addition, it helped build the capacity in groups to maintain a media presence and advance their policy goals over time.
Media advocacy training presented media strategy as part of overall policy advocacy and explained the role of the news media in setting the agenda, framing the issue, and advancing policy goals. Participants developed skills in gaining access to the news media, talking about violence prevention from a policy perspective, writing letters to the editor, producing op-ed pieces, and developing counterarguments to those of the opposition. Basic tips on the logistics of holding news conferences, developing media lists, and appearing on talk radio were provided. In some cases, on-camera training was used to help advocates prepare for interviews.
The VPI media approach illustrates that media must be combined with other activities and integrated with a broader strategy. It needs to support community action, not substitute for it. Gina Glantz, senior partner in the firm that developed the public education campaign, explained, “Using media without doing constituency building doesn't work. Real
CONNECTING THE DOTS
In the last week of May 1997, the state legislature was considering the ban on the sale and manufacture of Saturday night specials. The makings of a milestone were at hand, and gun control advocates, violence prevention professionals, concerned citizens, and opinion leaders newly versed in the debate came together to secure the victory. One advocate suggested a “Caravan for the Junk-Gun Ban”: People would travel from San Diego to Sacramento and rally on the capitol steps to focus attention on the deliberations of the state legislature. The caravan quickly gathered several sponsors, and planning for the trip began.
The mission of the caravan was to educate opinion leaders and policy makers about the problem of youth access to handguns. The group planned the trip strategically, choosing to hold rallies in the districts of key undecided legislators in order to highlight the issue. The firearmstrategy network provided intelligence on where the votes were. Research and education materials from PHVAK and PCVP provided necessary background on the facts of handgun violence and its toll on youth. The Trauma Foundation, parent of the PCVP, coordinated strategy for the planning process, while VPI grantees along the route provided logistical support. Media advocacy skills from previous trainings were put to use in conferences in key legislative districts; in some communities, events were held at trauma centers to emphasize the health perspective.
Media coverage of the caravan was extensive in print and on television, and in nearly every case the coverage reflected the advocates' frame: Personal stories of tragedy were used to highlight the call for a junk-gun ban. Statistics and media bites from the caravanners appeared in the coverage, while the opposition perspective was virtually absent. Copies of the newspaper stories were sent to the legislators. In addition, Handgun Control Inc. aired radio spots in Sacramento, and PHVAK purchased $200,000 in placements in Los Angeles and Sacramento for two commercials emphasizing that there were too many guns and referring viewers to an 800 number for further action. The PHVAK placements were mostly around the evening news shows (excellent opinionleader time), which were carrying stories about the caravan. As a result, requests to the 800 number shot up from an average of 13 calls per day
Many letters and phone calls had gone to the legislature. They came from youth in the VPI communities, opinion leaders, and probably some people who had read the news or seen the television commercials in the days leading up to the passage of the ban. In the final rally on the steps of the state capitol, “parents held a 75-foot quilt memorializing the 75 victims of handgun violence in Santa Ana two years ago.”63 This was the same quilt that had draped the dais in the city council chambers in West Hollywood when it became the first city to ban junk guns.
Many people had spoken in many ways to the legislature. Voices were raised on the radio, on television, in print, and in rallies the length of the state. People spoke from the research, and they spoke from their own personal tragedies. The legislators listened because they knew that when they returned to their districts, they would be held accountable for their votes. In the final days, key votes fell into place. Where a few years earlier there had been no voice about limiting handgun availability, now there was an uproar. More than noise, there was now political power and sophistication. One advocate, noting the role of the emerging fire-arm-strategy network, said, “In the hours that led up to the final vote [in the assembly], you could identify whose vote you needed and who had the clout to get the vote.”
The opposition spoke too, but this time it did not prevail. In California, there was now a powerful network of people united on the broad issue of violence prevention and committed to reducing the number of cheap handguns that were available to kill youth.
CONCLUSION
The Violence Prevention Initiative has been a catalyst for transforming the nature of the discussion about handgun policies in California. Just a few years ago, there was no organized constituency supporting limits on the availability of handguns. There was no loud, clear statewide voice linking guns, violence, and youth in a way that called people to action and provided a means to participate. Also, there was no shared long-term vision from which a strategy for change could evolve. If constituencies, voices, and vision did exist, they were isolated and struggling.
Within four years after the start of the VPI, 28 municipalities and six counties had passed junk-gun bans, and a bill banning the statewide manufacture and sale of junk guns was awaiting the governor's signature (see the next section). The community of Livermore had passed a ban through their city council, but before they had a chance to celebrate, it was turned into a referendum—and for the first time in California, a community voted to ban the sale of junk guns.
We are still a great distance from having policies that can reduce the almost 36,000 firearm deaths that we can expect this year in the United States. In California, the dramatic changes in the handgun environment may not produce quick changes in gun fatalities among youth. However, doing nothing to stem the widespread and easy availability of guns could hardly make the problem better. A large footprint has been left in the legislative landscape, and this will lead to more policy options that were not part of the pre-VPI environment.
The VPI set out to mobilize the state to prevent violence, not to pass a specific law or set of laws. Such a mobilization has occurred, but how did it happen? Some of the effect can be attributed to a unique blending of science, advocacy, and politics with a level of resources that were adequate to implement a sophisticated strategy. The VPI provided vision, commitment, and an opportunity for broad participation, creating a synergy that allowed the effect of each single effort to be magnified through the action of many others.
Vision. The VPI was based on a vision of what was possible in the long term rather than what was necessary in the short term. Service providers and advocates often lack even the limited resources necessary to meet the pressing needs of the day, much less the energy to take on a major public policy issue with strong opposition from well-funded groups. Yet in the planning and construction of the VPI, there was always someone looking beyond the horizon. As Andrew McGuire, PCVP director, explained, “The VPI provided the vision that allowed people to believe that the deadly role of handguns in youth violence could be reduced by changing policy.”
Commitment. The VPI comprised an extremely diverse group of people, many of whom had been touched personally by violence. During the project, some of those working on this issue in their community were injured and even killed as a result of violence. In these communities, people are committed to change as a matter of survival, and they teamed up with advocates who have a long history of working to make things better.
Participation. The extensive constituency-building effort was designed both to create an expanded base of opinion leaders with access to the debate about handgun policies and to provide those leaders with the knowledge, language, and tools to participate. Law enforcement, business, education, and health professionals joined with violence prevention specialists and others in their communities to create change. In addition, the extensive firearm-strategy network that evolved over the course of the project focused in a more concentrated way on those legislators who had the direct power to effect policy change. Where a few years ago legislators might have heard primarily from the pro-gun groups, by 1996 they were hearing from many diverse voices concerned about the devastating effects of handguns and committed to supporting limits on their availability.
Synergy. Many voices with one message about limiting handgun availability created a drumbeat for change. However, the power of those voices was their credibility and the implicit threat in their message. The credibility came from three sources: (1) the scientific research documenting the terrible toll of gun violence among youth and supporting the importance of limiting handgun availability, (2) the market research that provided local data, and (3) the connection of individual voices to a larger movement. The threat was clear, and it was reinforced by the results of the 1996 elections in California: Gun control was a voting issue, as it always had been, but now the votes were in favor of limiting handgun availability rather than against it.
The struggles over public policy are contentious because there is so much at stake. Public policy is the way that we, as a society, allocate risks and benefits to the population and establish norms for personal behavior and social intercourse. Public health, because of its focus on prevention, is inevitably about politics and policy. The VPI was drawn into the political process because that is one of the key arenas in which the struggle for change is waged. Importantly, TCWF and the VPI grantees have a keen understanding of how to educate policy makers within the context of Internal Revenue Service regulations limiting the activities of nonprofits. When they thought that these limits were being reached, they found alternative structures that allowed them the kind of participation they needed to make a difference. While it is too soon to say if the VPI has succeeded in its larger task of reducing violence, it can reasonably
POSTSCRIPT
On September 26, 1997, Governor Wilson vetoed the proposed legislation that would have banned the manufacture and sale of Saturday night specials in California.64 However, almost two years later, on August 27, 1999, Governor Gray Davis signed a bill to ban the manufacture and sale of Saturday night specials in California as of January 1, 2000. What was thought virtually impossible at the beginning of the VPI was now the law of the state.65
NOTE
Prepared for the 1997 California Wellness Foundation/University of California Wellness Lecture Series under a grant from The California Wellness Foundation. I wish to thank The California Wellness Foundation/UC Wellness Lectures Steering Committee for selecting me as a Distinguished Wellness Lecturer for 1997. I want to express my great appreciation to the following people for their contribution to various aspects of this chapter: Frank Acosta, Michael Balaoing, Mary Leigh Blek, Ralph Catalano, Carole Ching, Iris Diaz, Lori Dorfman, Tracy Fried, Gina Glantz, Eric Gorovitz, Jennifer Logan, Andrew McGuire, Kae McGuire, Meredith Minkler, Holly Potter, Bernardo Rosa, Susan Shaw, Andres Soto, Stephen Teret, Esther Thorson, Luis Tolley, Robin Tremblay-McGaw, Jan Vernick, Elaine Villamin, Liana Winett, Katie Woodruff, and Gary Yates. I am especially grateful to Linda Nettekoven and Kathryn Chetkovich for their extensive editing contributions. Also, I want to express my appreciation to, and admiration for, all those working on the Violence Prevention Initiative of The California Wellness Foundation. Their efforts will mean safer communities for all people in California. Finally, in the interest of disclosure, please note that I have worked for several years on the Violence Prevention Initiative and have received compensation for that work.
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20. ADOLESCENT SEXUALITY
AND HEALTH CARE REFORM
Adele Dellenbaugh Hofmann
More than half of all adolescents are sexually experienced well before the end of their second decade, leading to such serious consequences as unintended pregnancies, sexually transmitted diseases, and acquired immunodeficiency disease (AIDS/HIV).1 Yet we, as a nation, have not given a high priority to the primary prevention of these outcomes among sexually active youth in terms of either health education or health care itself. Public policy too often has swept teen pregnancy under the rug until after conception has occurred or has limited preventive concerns to seeking universal teen abstinence—an unrealistic goal at best. As a result, we have one million teenagers becoming pregnant each year, equivalent to one out of every nine 15- to 19-year-old girls, or one out of five among those who are sexually active.2 Some 600,000 give birth, becoming parents far too soon and curtailing their future potentials. Rates of gonorrhea, chlamydia, and syphilis among sexually active youth today are higher than among sexually active persons of any other age. While the number of cases of clinical AIDS remains low in the adolescent years, the incidence of HIV seropositivity is rising exponentially and is particularly high among inner-city, homeless, and runaway teens. It also is true that those who manifest AIDS between ages 20 and 26 in all probability become infected as adolescents. The costs to all these young people and to the nation are incalculable.3
Answers are far more complicated than simply telling adolescents to be abstinent until marriage and hoping that will happen—as has been
Cognitive and psychosocial developmental factors also come into play. Younger teens, in particular, are still concrete in their thought processes. It is not until midway in the second decade that they will gain the ability to think in an abstract manner. Concrete thinkers are existential, focused on the here-and-now. They cannot fully appreciate the future consequences of their current acts. At the same time, adolescents are defining their identities and seeking emancipation, processes that, by nature, involve a good bit of experimentation and at least some denial of associated risks.4
Societally, while our basic moral message continues to be one of no premarital sex, we do everything possible to promote it in an exceptionally provocative environment. In 1988, American television viewers were exposed to some 14,000 instances of sexual material, of which more than 9,000 were scenes suggestive of sexual intercourse with varying degrees of explicitness.5 Most such scenes were highly romanticized. Only 1% addressed sex education, sexually transmitted diseases (STDs), birth control, or abortion. In an even more recent study of televised sexual material conducted in the fall of 1996 during the prime-time family hour,6 three out of four programs (75%) on the major networks contained sexual content; 61% showed some degree of sexual behavior (up from 48% in 1986 and 26% in 1976), with 30% featuring scenes with a primary emphasis on sex (up from 23% in 1986 and 9% in 1976.) Further, during the three-week sample period, 15 cases of sexual intercourse were either depicted or clearly implied. Here again, only a handful (6%) had an overall emphasis on sexual risks and responsibilities, such as waiting until a relationship matures before having sex or pursuing efforts to prevent STDs or unwanted pregnancy when sexually active. Further, many MTV rock videos give messages that encourage not only sexual activity but also sexual exploitation—particularly in “heavy metal.”
The clothing industry seems equally bent on turning juniors into
These images create an environment in which there is an extraordinary degree of pressure to be sexually active, to “make out” in the pursuit of autonomy and identity, especially among males. In many respects, we continue to maintain the double standard of old in valuing and encouraging boys to press on and be sexually aggressive while valuing girls who can resist. But major societal changes have occurred in the female role. Prohibitions against sexual activity among unmarried women today are considerably less than in the past. Pregnancy and childbearing no longer need be an invariable outcome—contraception and abortion have changed the odds greatly. Further, single parenthood no longer results in social ostracism.
For many youths, sexual intimacy is something more than an impulsive response to pheromones, passion, or curious experimentation. Teens have a difficult and ambiguous status in our society. We call them “transitional,” which implies that they are neither here nor there but in transit between one place and another—in limbo. They have no significant role or place other than as students. They are not needed either to support the concept of the family, as are little children, or to contribute to society, as are adults. They are segregated away from the societal mainstream in schools and stratified in the classroom according to age. As a result, adolescents today comprise a distinct and separate subculture with powerful peer-group influences and few external ameliorating forces. Sexual activity frequently is perceived as an important marker of this subculture and something that “all kids do.”
Many adolescents who have a negative view of the world are chronically depressed with poor self-esteem and believe that sexual intimacy will provide the love and closeness that they so urgently want. As an added bonus for those teen girls who also are drifting with no sense of the future or personal goals and are doing poorly in school, having a baby often is perceived as providing someone to love and to love them unconditionally, as bestowing instant adulthood, and as ending their “in limbo” status. In a national longitudinal survey of eighth-grade students, more
Other youths are angry and feel deprived, both of which can lead to sexual acting out. Some teens have a self-interested, hedonistic view of life and a belief that they are personally entitled to get their due, including sexual gratification. The new phenomenon of the shrinking “American Dream,” in which young people rightly perceive that they will have less economic opportunity than their parents, may well promote a sense of disappointment and of being cheated by life with little point in delaying sexual activity.
All these societal and developmental factors combine to make it very difficult for adolescents to be fully responsible for their sexual behavior and create a situation that forces intimacy to be clandestine, unintended, and unplanned. Sexual risks tend to be denied by teens who often are both ambivalent about being sexually active and not cognitively mature enough to appreciate the potential risks. Powerful environmental and biological forces often overwhelm even the best of abstinence intentions. Once abstinence intentions give way to action, far less anxiety, fear, blame, and guilt are experienced if the adolescent allows himself or herself to be just swept away by overwhelming emotion, without conscious planning and in denial of risks in the mistaken belief that pregnancy or AIDS “can't happen to me.”
In countering these pressures, parents continue to find it difficult to give guidance to their young about sex beyond prohibition. Few mothers or fathers have open discussions about sexual decision making or sexual responsibility.8,9 Few even know whether their offspring are sexually active or even make such an inquiry. Many parents unwittingly even facilitate sexual activity. It is they who pay the bills for bikini bathing suits and miniskirts. It is they who no longer insist on adult chaperones at teen get-togethers. It is they who are very free with the keys to the family car or even buy their 16-year-old a car of his or her own as a rite of passage. And it is they who often are so self-preoccupied that they demand little accountability from their adolescent.
From another perspective, parental discord and divorce, together with the associated family chaos surrounding such an event, is a major contributor to adolescent health-risk behaviors, including sexual activity.10 The rate of divorce over the past decade has escalated to such a degree
A number of recent popular movies, humorous and good-natured in tone, provide clear models for adolescent sexual freedom by portraying young heroes who monumentally exceed the boundaries of parental permission—and get away with it—while their parents are not at home. In Risky Business, for example, Tom Cruise sets up his home as a bordello for his high school classmates as an entrepreneurial fund-raiser and barely returns the house to normal as his parents walk up the front walk. He does not get caught or suffer any penalty. This is a far different message from teen cult movies of the past, such as James Dean's Rebel without a Cause, so full of anguish and painful consequences for defiant behavior, or the resentful attitudes toward adult authority and adult limit setting expressed by adolescents in The Breakfast Club.
Schools do little better than parents at promoting responsible adolescent sexual behavior. While AIDS education has now been introduced into most secondary school classrooms, relatively few programs employ an approach based on combining social learning, social inoculation, and cognitive-behavioral learning theories, now recognized as the most effective method for modifying behavior (see the section “Modifying Adolescent Sexual Risk Taking”). The vast majority simply provide young people with information about the risks of sexual intimacy and advocate abstinence, an approach that has been found to have only a small effect. Few students are provided answers to all their questions in an honest, straightforward manner; nor are they equipped with the skills and support systems that they need to deal with our highly sexualized society. Moreover, none of these courses reaches the large number of sexually active young people who have dropped out of school. Current conservative political forces also seek to severely restrict sex education to teens. In 1966, the federal legislature appropriated $50 million annually for abstinence-only education in schools, mandating that “sexual activity outside of the context of marriage is likely to have harmful psychological and physical effects” be the only message taught and banning inclusion of any information about other means of pregnancy, AIDS, or STD prevention.12 Such actions totally ignore the fact that abstinence-only education is not very effective for the large numbers of young people who already are sexually experienced.
As far as the health care sector is concerned, with the exception of such specialized programs as family planning and adolescent medicine
THE STATISTICS
Sexual Activity
In 1995, the Centers for Disease Control's (CDC's) national school-based Youth Risk Behavior Survey (YRBS) 13 found that 53% of students in all grades reported being sexually experienced, with 17% having been involved with four or more lifetime partners. By the end of their senior year, nearly three out of every four male students (70%) and two-thirds of all female students (66%) had experienced sexual intercourse at least once, and 7% reported that they either had been pregnant or had impregnated a partner. Nine percent had even initiated sexual intercourse before they were age 13. African-American students (73%) were significantly more likely than White and Hispanic students (49% and 58%, respectively) to have ever had sexual intercourse (Table 20.1). These data were not singularly different from those found in the 1993 YRBS.14
The proportion of adolescent females who report being premaritally sexually experienced not only has increased dramatically over the past two decades but is the culmination of a trend that began at the turn of the 20th century and clearly suggests a fundamental and permanent societal change in teenage girls' sexual behavior. Despite their many statistical flaws and dominantly Caucasian subjects, Kinsey's surveys in the 1940s still provide significant information.15,16 Kinsey found that among women born before 1900, only 3% were premaritally sexually experienced by age 18—and this usually during the period of engagement with their fiancé But for those born just a few years later, or after 1900, the number increased sixfold to 18%, again primarily with a fiancé The incidence of sexual activity among adolescent boys, however, has not changed a great deal. In Kinsey's time, 40% of men reported that they were experienced by age 15 and 60% by age 17. The cardinal difference between past and present patterns of adolescent male sexual activity is
| 1993 | 1995 | |||||
|---|---|---|---|---|---|---|
| Female | Male | Total | Female | Male | Total | |
| SOURCES: Centers for Disease Control (1995 [14],1996 [13]). | ||||||
| Ethnicity/race | ||||||
| White | 47.4 | 49.8 | 48.4 | 49.0 | 48.9 | 48.9 |
| Black | 70.4 | 89.2 | 79.7 | 67.0 | 81.0 | 78.4 |
| Hispanic | 48.3 | 63.5 | 56.0 | 53.3 | 62.0 | 57.6 |
| Grade | ||||||
| 9th | 31.6 | 43.5 | 37.7 | 32.1 | 40.6 | 36.9 |
| 10th | 44.9 | 47.4 | 46.1 | 46.0 | 50.0 | 48.0 |
| 11th | 55.1 | 59.5 | 57.5 | 60.2 | 57.1 | 58.6 |
| 12th | 66.3 | 70.2 | 68.3 | 66.0 | 67.1 | 66.4 |
| Four+partners | 15.0 | 22.3 | 18.8 | 14.4 | 20.9 | 17.8 |
| Total | 50.2 | 55.6 | 53.0 | 52.1 | 54.0 | 53.1 |
There has, however, been a recent modest drop in the proportion of both teens who are sexually active, as evidenced in the CDC's series of high school youth surveys,13,14,19 and females, as seen in the 1995 National Survey of Family Growth (NSFG).20 In the 1990YRBS, 59% of all students reported that they were sexually experienced as compared to 55% in 1991 and 53% in 1995. Over the same period, there was a drop of 3%, from 40% to 37%, in the number of students reporting two or more lifetime partners and a decrease of 6% for four or more partners.
In the 1995 NSFG, the percentage of teenage females aged 15 to 19 years declined to a slightly greater degree (Figure 20.2), with only
Figure 20.1. Percentage of women aged 15, 18, and 20 whohad premarital sexual intercourse by birth cohort. Source: Cates(1990 [17]).
Figure 20.2. Percentage of women aged 15 to 19 years who reported having had premarital sexual intercourse—United States, 1970–1995. Source: Abma et al. (1997 [20]).
Despite the overall drop in the percentage of sexually active youth found in these surveys, a return to universal teen abstinence is highly unlikely. First, taking an overall figure is misleading in not considering the data by both ethnicity and age (Table 20.1). A closer examination of YRBS findings reveals that three-quarters of all Black adolescents continue to be sexually active, that rates among Hispanic girls are increasing, that more 11th-grade females of all ethnicities were sexually active in 1995 than in 1993, and that the percentage of sexually active 12th-grade females has not changed. Second, the trend toward an increasing incidence of premarital sexual intercourse, particularly among teenage girls, has taken place over a span of nearly nine decades and can only be seen as reflecting a major and persistent societal change in normative adolescent behavior. It is clear that a substantial number of teenagers will continue to be at risk from sexual activity and that initiatives promoting abstinence alone will be far from sufficient to meet the task of protecting our adolescents from serious health harm.
The initiation of sexual activity appears to be determined by the interaction of a number of biological, psychological, cultural, and social factors, either singly or severally, including early pubertal onset (particularly in girls), cognitive immaturity, ethnicity, dysfunctional home situations, past physical or sexual abuse, chronic depression, poor self-esteem, absence of future plans, poor schooling, and economic disadvantage.22–33 Most of these studies also show a significant association of an early coital debut, multiple partners, choice of a high-risk partner, and nonuse of protection with a wide range of other problem behaviors, such as alcohol use, marijuana use, school problems, minor delinquent acts, depression, and suicide attempts. Only Stanton 34 showed no such relationship in a survey of African-American youths in a public housing project. These adolescents perceived sex as being in a very different domain.
None of these studies, however, assess the degree to which these other associated risk behaviors are within the experimental or committed range and the degree to which they can be considered truly dysfunctional and deviant. Further, all persons are sexual beings from the time of birth, and the exploration of intimacy in general is a normal behavior for adolescents
Pregnancy
As previously noted, about one million teenagers become pregnant each year.2 In 1990, 11% of all adolescent girls became pregnant, 5% gave birth, 3.3% had an out-of-wedlock birth (although many in-wedlock births were premaritally conceived), 4.6% had an abortion, 1.5% experienced a miscarriage, and only 0.13% gave up their baby for adoption.35 Another way of looking at this epidemic is to state that 43% of the approximately 17 million teen females in the United States will become pregnant at least once before they reach their 20th birthday.36 Further, the vast majority of current teen births are out of wedlock. In 1960, only 15% of all adolescent births were to single mothers, but by 1993 this figure had increased nearly fivefold to 72% (Figure 20.3).37 Rates are highest among teenagers of Mexican, Puerto Rican, and African-American ethnicity, as they are for Mexican, Puerto Rican, and African-American women of all age-groups.38
There has, however, been a recent reversal in the birth rate to teens (Figure 20.3). Although the rate among 15- to 19-year-olds rose by nearly 10% from 53.0 births per 1,000 in 1980 to a high of 62.1 per 1,000 in 1991, the subsequent three years saw a drop of 3% to a rate of 58.9 per 1,000 in 1994.37 This drop, however, was considerably less (only 1%) when 18- to 19-year-olds were excluded, with rates for 1980, 1991, and 1994 among 15- to 17-year-olds being 32.5%, 38.7%, and
Figure 20.3. Birth rates for women aged 15 to 19 years—United States, 1970–1994. Source: National Center for Health Statistics (1996 [37]).
Whatever decrease in adolescent birth rates has occurred is almost exclusively due to more effective contraception (particularly among older teens), not a higher incidence of abortions—which actually has declined—or a reduction in the percentage of sexually active youths, which has only modestly changed. Further, despite this recent decline, the 1994 teen pregnancy rate is still higher than in any year prior to 1990.
California is no exception to high teen birth rates and, in fact, has a substantially higher 15- to 19-year-old rate (68 per 1,000) than the national average (58.9 per 1,000).39 Here too, however, there has been a significant drop of 5.5% from 69.9 births per 1,000 population in 1993 to 64.4 per 1,000 in 1995. These statistics, however, do not reflect the wide geographic variation within the state with singularly high teen birth rates ranging from 92 to 100 per 1,000 15- to 19-year-olds and comprising 18% to 20% of all births reported in Fresno, Kern, Kings, Madera, Merced, and Tulare, all agricultural counties, with the largest number of births (both adolescent and adult) being to mothers of Hispanic ethnicity.40 Nor do these figures represent the true scope of the problem, as California has an even higher adolescent pregnancy rate than reflected in teen birth statistics alone. In 1992, this state had both the highest total number of estimated abortions (338,700) and the highest abortion ratio (564 abortions per 1,000 live births) of any state in the United States.41 As approximately one in five of all abortions are in teenage girls, it can be concluded that California has one of the highest, if not the highest, teen pregnancy rate in the nation.
The cost of births to adolescents alone argues for a greatly expanded program of contraception. Few teen mothers place their babies for adoption (only 2%), and most establish families of their own, often as single parents. In a 1989 study by the Center for Population Options, it cost $21.55 billion to support these young families, or 53% of the public funding spent for Aid to Families with Dependent Children (AFDC), food stamps, and Medicaid (Medi-Cal in California).42 By 1992, this figure had risen to $34 billion,43 with the typical AFDC household receiving $1,426 per month in benefits, or $17,112 per year.44 Effective contraceptive programs could result in substantial savings, particularly in California, where teen births impose a singularly high toll on our financial resources. For every $1 spent on family planning services in this state, $7.70 is saved by averting an unintended birth and its attendant health and welfare costs as compared to an average national savings of $4.40.45 These costs are but the tip of the iceberg when one considers all that is required to support teenage families. In 1992, for example, more than 1,900 kindergarten classes were needed in California to serve just the children born to teen mothers five years earlier and cost the state almost $262 million.46
The United States fares poorly when measured against teen pregnancy and pregnancy outcomes in other developed countries. Rates in this country for 15- to 19-year-olds are twice as high as in England, New Zealand, or Canada; three times as high as in Sweden; and nine times as high as in the Netherlands.2,47 In a detailed comparative study conducted in 1981,48 the average pregnancy rate in selected European countries was 36 per 1,000 adolescent girls, with one-third terminating in abortion and two-thirds resulting in a live birth. In the United States, there were three times as many conceptions, or 98 per 1,000 (Figure 20.4). Moreover, the adolescent abortion rate in the United States alone exceeded the total conception rate of any of the comparison countries. Somewhat more recent data reveal even more dire findings, with 1989 teen pregnancy rates having substantially declined throughout Europe to 13% in Germany, 8.6% in the United Kingdom, and 0.9% in the Netherlands and Denmark49 at a time when the teen pregnancy rate in this country was at a high of 38.7%.19 The primary difference in both studies was not in the incidence of sexual activity—it was similar in all countries—but rather in public policy. The European countries had adopted a vigorous primary prevention approach and provided comprehensive sex education and readily available contraception to all adolescents in need. The United States, on the other hand, approached the issue by promoting abstinence
Figure 20.4. Pregnancy rates and outcomes among adolescent women aged 15 to 19 years in selected western European countries and the United States. Source: Jones et al. (1985 [48]).
Abortion
Between 1980 and 1990, the annual ratio of legal abortions to live births for all age-groups in the United States remained relatively constant at approximately 350 per 1,000. Since 1990, however, this ratio has gradually declined to 321 per 1,000, as has the total number of abortions (from a high of 1,429,577 in 1990 to 1,267,415 in 1994).50 The proportion of all abortions occurring in adolescents 19 years of age or less has decreased from a high of 32.6% in 1972 to 20.2% in 1994, although this latter figure has decreased less than 1% since 1991 (21%) and reflects a lesser effect of prevention efforts in this age-group than in others (Table 20.2). Adolescents aged 15 to 19 years are 1.5 times more likely than adults to terminate a pregnancy, with an abortion ratio of 440 per 1,000. When broken down for each year of age, the ratios for younger adolescents are even higher. In 1992 (the latest date for which detailed data are available), the abortion ratio was 790 per 1,000 for those 14 years of
| Year | All abortions in 10- to 19-year-olds[a] (%) | Total no. of abortions in 10- to 19-year-olds (in 1,000s)[a] | Abortion ratio in 10- to 14-year-olds[b] | Abortion ratio in 15- to 19-year-olds[b] | Abortion rate in sexually active 10- to 14-year-olds[c] | Abortion rate in sexually active 15- to 19-year-olds[c] |
|---|---|---|---|---|---|---|
aFrom Centers for Disease Control, Abortion surveillance: Preliminary data—United States, 1994, Morbidity and Mortality Weekly Report 45(1997), 1123. | ||||||
bNumber of legally induced abortion per 1,000 live births in age-group (from S. K. Henshaw and J. Van Vort, Abortion services in the United States, 1991 and 1992, Family Planning Perspectives 26 [1994], 100). | ||||||
cNumber of legally induced abortions per 1,000 sexually active females in age-group (from A. M. Spitz, P. Velabil, L. M. Koonin, et al., Pregnancy, abortion and birth rates among US adolescents—1980, 1985, and 1990, Journal of the American Medical Association 275[13, 1975], 989). | ||||||
| 1994 | 20.2 | 256.0 | — | — | — | — |
| 1993 | 20.0 | 266.0 | — | — | — | — |
| 1992 | 20.1 | 273.2 | — | — | — | — |
| 1991 | 21.0 | 291.7 | 502 | 379 | — | — |
| 1990 | 22.4 | 320.2 | 515 | 403 | 41.7 | 55.5 |
| 1985 | 26.3 | 349.4 | 624 | 462 | 48.0 | 73.7 |
| 1980 | 29.2 | 378.9 | — | — | 41.2 | 78.3 |
| 1976 | 32.1 | 317.2 | — | — | — | — |
| 1972 | 32.6 | 191.3 | — | — | — | — |
Sexually Transmitted Diseases
The prevalence of STDs among adolescents at risk from sexual activity is higher than among at-risk individuals of any other age. In 1995, the rate of gonorrhea among 15-to 19-year-olds was 665 per 100,000, with rates of 840 per 100,000 for teen females and 498 per 100,000 for teen males (Table 20.3).51 There were striking differences, however, when race and ethnicity was taken into account. Rates in African-American adolescents were more than 20times those who were White or Hispanic. Teen females led all age-groups in reported prevalence; teen males were second only to 20- to 24-year-olds. If these data were modified to include only those individuals who were sexually active and at actual risk, the teenage rate would be even higher; considerably fewer adolescents are sexually active (50%–55%) as compared to older populations (80%–90%).52 It is true, however, that there has been a significant drop in reported gonorrhea rates since 1992 for all age-groups, including adolescents, with a greater decline in males than females.51,53 Nonetheless, inter-age-group gonorrhea ratios remain the same, and teen females continue to have the highest prevalence of this disease even when not factored for at-risk status.
The gonorrhea data parallels the high prevalence of other common STDs in adolescents and often is a comorbid infection. Cervical and vaginal cultures of various sexually active female adolescent populations find an average of 11% (range: 3%–18.3%) positive for gonorrhea, 22% (range: 15%–37%) for chlamydia, 21% (range: 6%–48%) for trichomonas, and 39% (range: 32%–46%) for human papilloma virus as detected by positive cervical cytology or DNA probe. Among urethral cultures in sexually active adolescent males, an average of 6% (range: 3%–9%) are positive for gonorrhea and, in one study, 3% for chlamydia.35
The greater incidence of STDs in sexually active adolescents as compared to older sexually active populations is attributed to a combination of an early coital debut, exposure to a greater number of partners, and a less frequent use of the condom. The highest STD rates are seen in disadvantaged inner-city teens, for whom these behaviors are even more prevalent than in advantaged youths.35 The primary exception is human papilloma virus infection, which has been found to be as frequent in college-age females as in female juvenile detainees.54
Pelvic inflammatory disease (PID) is one of the most serious complications
| 1992 | 1993 | 1994 | 1995 | |
|---|---|---|---|---|
| SOURCE: U.S. Department of Health and Human Services, Public Health Service, Division of STD Prevention, Sexually Transmitted Disease Surveillance, 1995 (Atlanta: Centers for Disease Control, 1996). | ||||
| All races/ethnicities | ||||
| Total | 869 | 733 | 739 | 665 |
| Male | 770 | 616 | 590 | 498 |
| Female | 974 | 857 | 897 | 840 |
| White, non-Hispanic | ||||
| Total | 166 | 137 | 151 | 143 |
| Male | 72 | 49 | 50 | 45 |
| Female | 264 | 230 | 258 | 246 |
| Black, non-Hispanic | ||||
| Total | 4,979 | 4,333 | 4,328 | 3,843 |
| Male | 4,888 | 4,062 | 3,893 | 3,267 |
| Female | 5,073 | 4,611 | 4,772 | 4,433 |
| Hispanic | ||||
| Total | 279 | 280 | 257 | NA |
| Male | 209 | 207 | 180 | NA |
| Female | 359 | 361 | 343 | NA |
From 1981 through 1991, syphilis rates among both male and female 15- to 19-year-olds accounted for 10% to 12% of all primary and secondary cases, with a 1991 rate of 18 cases per 100,000 males and 35 cases per 100,000 females.57 Although rates were highest among 20- to 29-year-olds of both sexes throughout this period, between 1987 and 1990 rates for adolescents rose by 41% among 15- to 19-year-old males and by 112% for 15-to 19-year-old females, contributing significantly to the overall 21% increase in the prevalence of primary and secondary syphilis that occurred during this time. By 1991, the rate for 15- to 19-year-old females (35 per 100,000) was almost twice that of males, reflecting a dramatic increase among women of all ages in the latter half of the 1980s.
Figure 20.5. Annual number of AIDS cases reported in adolescents aged 13 to 19 years by sex—United States, 1984–1996. Source: Centers for Disease Control (1997 [58]).
Acquired Immunodeficiency Disease (AIDS/HIV)
As of December 1996,58 a cumulative total of 2,754 cases of clinical AIDS had been reported in 13- to 19-year-old adolescents; 63% of these cases occurred in males and 37% in females (Figure 20.5). Among 20to 24-year-olds, who most likely became infected as adolescents, there was a cumulative total of 21,097 cases with a male-to-female ratio of three to one. This represents a dramatic increase in total AIDS cases since just 1993, when only 157 cases among 13- to 19-year-olds were reported.59 Data about AIDS cases prior to this time are difficult to interpret, as the diagnostic criteria were greatly expanded in 1993, admitting a far greater number of cases than before. Cumulative 1996 data for HIV seropositivity revealed a total of 3,193 cases in 13- to 19-year-olds for nearly a one-to-one male-to-female ratio, with females predominating (1,563 and 1,630 cases, respectively).
The adolescent age-group is the only one to demonstrate such a high proportion of HIV/AIDS cases occurring in females. All other groups
| 13–19 years | 20–24 years | |||
|---|---|---|---|---|
| Exposure Category | N | (%) | N | (%) |
aIncludes patients pending medical record review; patients who died, were lost to follow-up, or declined interview; and patients whose mode of exposure to HIV remains undetermined. | ||||
| SOURCE: Centers for Disease Control, U.S. HIV and AIDS cases reported through December 1995, HIV/AIDS Surveillance Report 7(2, 1996), 1. | ||||
| Males | ||||
| Men who have sex with men | 501 | (33) | 9,084 | (63) |
| Injecting drug use | 97 | (6) | 1,803 | (13) |
| Men who have sex with men and inject drugs | 77 | (5) | 1,562 | (11) |
| Heterosexual contact | 646 | (42) | 539 | (4) |
| Hemophilia/coagulation disorder | 38 | (2) | 505 | (4) |
| Recipient of blood transfusion, blood components, or tissue | 66 | (4) | 101 | (1) |
| Other/undetermined[a] | 109 | (7) | 802 | (6) |
| Total | 1,534 | (100) | 14,396 | (100) |
| Females | ||||
| Injecting drug use | 132 | (16) | 1,430 | (31) |
| Coagulation disorder | 9 | (1) | 12 | (<1) |
| Heterosexual contact | 440 | (54) | 2,338 | (51) |
| Recipient of blood transfusion, blood components, or tissue | 60 | (7) | 105 | (2) |
| Other/undetermined [a] | 179 | (22) | 674 | (15) |
| Total | 820 | (100) | 4,559 | (100) |
While the incidence of HIV/AIDS infection in adolescents is low compared to older individuals, certain youth populations show an alarmingly high prevalence of HIV infection (Table 20.5). For comparison, the
| Group | Age (Years) | % HIV Positive |
|---|---|---|
| SOURCE: U.S. Congress, Office of Technology Assessment, Adolescent Health—Volume 2 (Washington, D.C.: U.S. Government Printing Office, 1991). | ||
| Military active duty five-year conversions | 17–19 | 0.01 |
| Military applicants | 17–19 | 0.03 |
| College youth | College age | 0.2 |
| Juvenile detainees | 16–17 | 0.2 |
| Job Corps enrollees | 16–21 | 0.4 |
| Youths seen in an inner-city adolescent clinic | 15–18 | 0.7 |
| Adolescents attending an STD clinic | 15–19— males | 2.0 |
| 15–19— females | 2.5 | |
| Runaway and homeless youth | 15–18 | 3.0 |
Risk Taking: Contraceptive and Condom Use
Risks of pregnancy, STDs, and HIV seropositivity are all greater in those sexually active youth who fail to use protection and in those who use protection, but inconsistently. In the CDC's 1995 YRBS,13 slightly more than half of all sexually active high school students (54%) used a condom
Data from the 1995 NSFG shows a similar trend employing somewhat different questions.20 Among 16-year-old females, 57% had used some method of protection at their first coital episode, with 15% relying on the pill and 32% on the condom. For teen women less than 20 years of age, use of any method was lowest among Hispanics (53%) and highest among non-Hispanic Whites and non-Hispanic Blacks (83% and 72%, respectively).
Other studies support a picture of wide variability in contraceptive and condom practices depending on the population studied. Different surveys have found that anywhere from 31% to 80% report that they always use a method, and from 16% to 58% state that they never use one. 21-24,66-69 When adolescents themselves are asked why they do not use protection, two-thirds (65%) state that sex was unexpected, one in four (25%) do not know how to obtain protection or where to go, one in four (24%) fear parental discovery or method side effects or are too embarrassed to seek out services, and one in six (15%) believe that they are safe without birth control and will not get pregnant.70 Although condom and pill use appears to be slowly increasing among sexually active adolescents as a class, a significant number continue to remain unprotected at least some if not all of the time.
Not all teenagers seek to avoid pregnancy, as much as one might think to the contrary. Any efforts to promote contraceptive use among these
Factors that have been found to support contraceptive and condom use include the following: 20,24,–28,61,63,73,74
- Having educational goals
- Doing well at school
- Ability to pay
- Married parents
- An older partner
- Fewer other risk behaviors
- A belief in the efficacy of condom use against HIV infection
- Suburban residence
- Cognitive maturity, older age
- Prior satisfactory contraceptive use
- Higher parental educational level
- Fewer life-time partners
- Friends who use condoms
- A low perception of undesirable aspects of condom use
It is significant to note that HIV knowledge, fear and anxiety about HIV infection, or intentions toward avoiding other risk behaviors were not found to have any substantial effect on sexual risk taking or on contraceptive and condom use.24,25,63,65
MODIFYING ADOLESCENT SEXUAL RISK TAKING
Educational Interventions
Evaluations of educational intervention strategies all show that knowledge alone has little effect on modifying behavior. Simply telling adolescents not to have sex, providing them with information about associated risks, or informing them about protective measures through passive learning methods neither increases nor decreases the age of coital debut, the frequency of sexual intercourse, the number of partners, or the use of protective methods.72,75,76 Even those educational programs that are interactive and focus on building skills only delay the onset of the coital
The health belief model offers an explanation of the complexities of health behavior modification as well as direction for developing effective intervention strategies.27,78 This theory holds that an adolescent will modify his or her behavior only when he or she perceives a clear and personal benefit in doing so. Three separate but interactive elements collectively determine this perception. First, a youth must perceive that his or her sexual risk taking poses an immediate and serious personal threat. Second, the youth must have appropriate knowledge about the benefits of behavior modification (e.g., being abstinent, using effective contraception). That is, he or she must believe in the new behavior's effectiveness, know how to implement it (e.g., resist sexual pressures, obtain and use protection), and have positive attitudes about it. The last element consists of a number of variables that support or undermine these perceptions and beliefs, including sociodemographics, cognitive maturity, motivation, self-esteem, the presence or absence of other risk-taking behaviors, emotional risks, and health-seeking and compliance behaviors. An external catalyst that brings the matter close to home often is required to move intention into actual practice, such as a friend's becoming pregnant or the promptings of a meaningful and supportive person in the adolescent's life.
This health belief model, together with social learning theory, social inoculation theory, and cognitive/behavioral learning theory, has served as the basis for new and innovative sex education programs with the goal of delaying the coital debut and enhancing contraceptive use in cognitively immature adolescents.75,76,79–82 Curricula are narrowly focused on program goals and are participatory in nature. The prediction is that successful enactment of a desired behavior will encourage that behavior in the future (e.g., convincing a partner to delay having sex though rehearsal will lead to delaying in actuality). Course activities closely look at social and media influences and pressures to have sex as well as provide the modeling and practicing of communication and negotiation skills. Abstinence as a positive behavior is strongly supported, as is effective protection for those who are sexually active. Students who participate in these courses are significantly more likely to continue to delay their coital debut for at least 18 months. In one such program, given over 10 sessions to eighth-grade students in Atlanta, only 24% of inexperienced students had become sexually active at the end of the following year as compared to 39% of students in schools that did not offer
Health Care Interventions
Over the past few decades, an increasing number of health programs specifically targeted at adolescents have emerged. The vast majority are school-linked, hospital-based, or community-based clinics.83 All are comprehensive in that they address biological, psychological, and social needs; seek to provide an optimal adolescent health care environment; and offer preventive and early intervention services for health risk behaviors. Many family planning programs also have special programs for adolescents' reproductive health care needs.
Most attention and interest has been given to school-based and school-linked clinics (SBSLCs), which provide a wide range of health services, particularly to disadvantaged and uninsured youth.84–90 The impetus for what has been a rapid expansion of SBSLCs, particularly in relation to a belief in their effectiveness in pregnancy prevention, comes from the initial evaluation of the first such program, which was initiated in St. Paul—Minneapolis in 1977.91 Originally, there appeared to be both a significant increase in contraceptive use with a 93% 12-month continuation rate and a reduction in schoolwide births from 79 to 35 per 1,000 students over the first three years. Subsequent reevaluation of the St. Paul data, however, uncovered significant problems with the first analysis, suggesting that the initial findings were more artifact than real.92 A broader look at longitudinal data, both before and after program implementation, found wide fluctuations in schoolwide birth rates from one year to the next that originally had not been taken into account. When these variations were included in the statistical analysis, there was no significant difference in overall schoolwide birth rates in the postprogram years from those that preceded it.
The reproductive health programs of six SBSLCs in different parts of the country also have been evaluated.93,94 While these clinics demonstrate modest effects on diminishing sexual risk taking, at the same time it is important to note that they did not promote sexual activity in any way, neither hastening the onset of sexual activity nor increasing its frequency. Effects on contraceptive use were varied. Simply providing birth
- A strong school AIDS education program in a community where AIDS was a significant issue
- A school policy and educational program that placed pregnancy prevention as a matter of high priority
- Identification of and focusing on high-risk youth with a strong emphasis on pregnancy prevention
While these strategies definitely increased contraceptive use in those SBSLCs that dispensed them, use remained inconsistent, and none of the six clinics demonstrated a statistically significant effect on schoolwide pregnancy rates, although a small number of conceptions may have been averted.
One SBSLC that has shown dramatic results (not included in the previous study) is linked to a Baltimore school.66,95,96 In the three years following inception of the clinic, there was a 30% drop in the pregnancy rate compared to a 57% pregnancy rate increase in regional schools without SBSLCs during the same time. Factors contributing to this success were thought to be the high priority given to pregnancy prevention as a matter of school policy and curricular objectives; the fact that the clinic was located near but not on the school campus, affording greater privacy; and the fact that the clinic was open during after-school hours, affording greater accessibility.
Community-based programs aimed at adolescent pregnancy prevention also have had mixed success as measured by teen fertility rates.66 One such program, the Multimodal School/Community Program for Sexual Risk Reduction Among Teens, implemented in rural South Carolina, was a comprehensive coordinated approach involving schools, churches, homes, community agencies, and public media. The message to youth was to postpone the onset of sexual activity but, if they were sexually active, to use contraception consistently. A trained school nurse based in an SBSLC provided males with condoms and took females to a local family planning clinic. In the first year, pregnancy rates dropped from 61.7 to 25 per 1,000. A nearby county without such a program showed an increase of 8.5 per 1,000. Reduced rates persisted for three
Earls 97 compared the effectiveness of seven hospital-based adolescent medical clinics funded by the Robert Wood Johnson Foundation to provide comprehensive health care to high-risk adolescents with three similar but nonfunded clinics. Funded clinics detected and treated a substantially wider range of medical and behavioral problems than those that were not funded, but effectiveness was limited. Measures of improvements in lifestyle, risk-taking behaviors, and related medical outcomes showed minimal change.
Studies of family planning clinic effectiveness are mixed. Those clinics with special programs for or special emphasis on adolescents result in greater contraceptive use. Those with less emphasis conduct more teen abortions.66 As a result, both demonstrate similar teen birth rates but, obviously, for very different reasons.
While the ability of special adolescent health care programs to reduce adolescent pregnancies appears to be limited, the model should not be discarded. Overriding factors must be taken into account.
First, given the high-risk nature of many of the adolescents seen in these programs (most are from low-income families and live in disadvantaged environments), any interventions, no matter how well conceived, are likely to be seriously compromised by such central issues as poverty, dysfunctional families, disrupted schools, neighborhood violence, and, for many, limited English proficiency. State and local restrictions on contraceptive and condom distribution in schools and community opposition to dealing openly with the reality of adolescent sexuality also impose substantial barriers.
Second, many young people attending teen clinics have no other source of health care and cannot afford it. Subsidized teen clinics often are the only place they can obtain attention for their health needs.
Third, the highly supportive and comprehensive orientation of SBSLCs, wherever based, and the delivery of care by professionals skilled in working with teens—as opposed to the orientation and care practices found in most private practice offices—are far more likely to promote disclosure of behavioral risks and psychosocial problems and to provide age-appropriate care and counseling to individual youths in need.
Lastly, the adolescent clinic model, wherever based, embodies many of the elements thought to be important for adolescent health care (as discussed in detail in the following) and can well serve as a springboard for further research.
ADOLESCENT HEALTH CARE RESOURCES AND
UTILIZATION BY ADOLESCENTS
Special Adolescent Clinics
A national survey of special adolescent clinics identified 664 such programs.98 Nearly half (45%) were connected with schools (SBSLCs), and one-quarter (22%) were hospital based. One in five (20%) were community or neighborhood centers, and 8% were located in departments of health. More than 90% of these programs provided pregnancy testing, AIDS education, family planning counseling, and STD treatment. Three-quarters (76%) dispensed condoms and provided contraceptive services on site; the remainder had linkages with offsite resources. Confidentiality was regularly afforded, although many SBSLCs required parental permission for the adolescent to use the clinic at all. Young people who attended these clinics averaged 3.6 visits per year and expressed considerable satisfaction with care. Only 44% of the clinics collected patient fees, which were on a sliding scale based on the adolescent's ability to pay. Seventy-two percent received federal funding subsidization, and 75% received state and/or local support. Unfortunately, these special youth programs serve only 5.3% of all 15- to 19-year-olds, meeting the health care needs of only a very few.
Adolescents tend to use family planning clinics more often than private physicians for birth control. In the 1988 NSFG, 30% of all 15- to 19-year-old females reported at least one family planning clinic visit in the previous year. Attracting factors include low cost (private physician fees for similar services are four times as great) and confidentiality. Nearly 9 out of 10 (87%) family planning clinics provided birth control to minors without parental consent.66
The Private Sector
Data from the 1985 National Ambulatory Care Survey and the 1988 National Health Information Survey found that there were 50.216 million visits by 10- to 18-year-olds, an average of 1.6 visits per adolescent
Leading reasons for these visits were general medical and routine physical examinations (10%), symptoms referable to the throat (7%), acne (4%), and routine prenatal care (6%).100,101 The time spent during a physician visit averaged 14 minutes for adolescents compared to the national norm of 16.5 minutes. But nearly half of all visits (48%) were 10 minutes or less, and only 1 in 25 (4%) lasted 30 minutes or more. There is little to suggest that the length of such visits has increased in the intervening years, particularly in light of the expansion of managed care and its focus on lowering health care costs through increasing physician productivity (e.g., seeing more patients in less time).
Only a minority of visits to primary care physicians deal with sexuality issues. A recent survey of more than 1,000 primary care physicians, for example, found that only 40% of respondents routinely inquired about sexual activity among their adolescent patients, only 17% screened for the teenager's number of sexual partners, and only 9% ever provided condoms.102 In a survey of youths themselves, fewer than two out of five (39%) had ever discussed how to avoid getting HIV or STDs with a physician, only 13% had received information about how to use condoms, and only 15% had been asked about their own personal sexual behaviors.103 There does, however, appear to be a positive change in these data from those of the last decade, when a survey of college freshmen revealed that 81% had never received counseling about contraception from a physician, and 79% had never received counseling about STDs.104
Most adolescents (80%–90%) and parents (80%) see physicians as an important resource for discussions about sexuality.103,105 Inquiries of teens themselves, however, find a wide disparity between what they would like to talk to a physician about and what actually does get talked about. In one survey of urban high school students, although the vast majority wanted information about STDs (80%), AIDS (85%), condoms (73%), and safe sex (80%), only 27% reported ever having discussed any of these subjects with their physicians.106 Of particular interest is the finding in this and similar surveys that adolescents find it difficult to initiate a discussion about sexuality issues and look to the physician to do so. At the same time, physicians themselves find this difficult to do. Parents
Confidentiality
Privacy surrounding sexuality issues is an essential ingredient of health care for adolescents.108 There is considerable variation, however, in the degree to which teenagers trust their physicians to keep confidences, depending on the nature of the problem. In one survey,109 most adolescents trusted that their physician would keep it secret if they asked questions about sex (75%), if they were having sex (65%), or if they were using contraception (68%). Only a minority, however, would trust their physician to keep secret the actual presence of an STD (44%) or pregnancy (44%). The level of trust rose among adolescents who knew that physicians in their state do not have to tell parents about either of these conditions, but only to 54%. In another report of 10th-grade students, more than half (58%) would not seek STD care for fear parents would find out, and three-quarters (78%) were afraid that friends would find out. Other perceived barriers were that they did not know where to go (38%), had no transportation (29%), did not think that they could afford care (48%), or were too embarrassed to talk to a doctor (43%).66,108 Among a randomly selected group of adolescents residing in Massachusetts, more than half (58%) had health concerns they wished to keep private from their parents and were concerned about whether a physician would respect their confidences. Of those with a regular source of health care, four out of five (86%) would go to their physician for a physical illness, but only half (57%) would go if there was a question about pregnancy, AIDS, or substance abuse. Three out of every four (77.7%) felt that being sexually active should be kept confidential, 46% felt the same way for STD infection, 55% for pregnancy, and 35% for HIV seropositivity.110
Teenagers generally have poor information about their legal rights to confidential care and the fact that, in all jurisdictions, minors can consent on their own to care for STDs and, in many states, also can consent on their own to contraceptive services, pregnancy diagnosis, and prenatal care. In one study, two out of every three adolescents did not know that they had a legal right to consent to care for STDs. Three-quarters (75%) either believed that STD clinics would tell parents of their visit or did not know whether parents would be notified. Nearly four in five (79%) believed that STD treatment required parental consent.66 Over
This lack of trust of the private sector is not entirely misguided. One national survey of general practitioners and family medicine practitioners—who account for the largest proportion of adolescent visits—found that only 59% were willing to provide contraception to minors without parental consent, and only 57% believed that minor adolescents should have this right.105 An inquiry into physician attitudes about selected ethical dilemmas found that 61% of all respondents would tell a mother of her 15-year-old daughter's pregnancy even against the girl's strongly stated wishes to the contrary and even despite her legal right to confidential care.107 A substantial majority of pediatricians, however, are accepting of the confidentiality option.111 Further, the American Academy of Pediatrics has specifically adopted the position that confidentiality is an important ingredient in adolescent health care, enabling minor youths to seek out early and timely services for sensitive and personal health problems. While strongly encouraging parental participation, the Academy views that mandatory parental consent results only in adolescents maintaining silence about their medical need, unnecessarily delays treatment, and places them at greater risk of health harm.112–114
Competence and Interest
of Private-Sector Physicians
Surveys of physician attitudes toward adolescent patients find that general practitioners, family medicine practitioners, and internists have only a modest interest in this age-group, with only one in four expressing definite interest.115 Even if interested, many are not skilled. Currently, there are insufficient primary care physicians in the United States with the type of training and experience required to provide the nation's 35 million adolescents with age-appropriate care.115,116
Most physicians and other health care providers have limited competence in identifying and treating the health problems of adolescence. Studies have shown that general and family practitioners, pediatricians, and internists all have difficulty identifying adolescents who have behavioral and emotional problems and consider themselves relatively untrained in managing adolescent sexuality, contraception, and psychosocial concerns. Further, only 30% of those who perceive themselves to have such deficiencies have any interest in increasing their competence.115
There may be change among future pediatricians and internists. All approved pediatric residency programs 117 now are required to have a fulltime faculty member trained in adolescent medicine, and all residents must have at least a one-month rotation with teenage patients exclusively as well as additional experience with young people in ambulatory and inpatient settings. Internal medicine residency training requirements also call for specific experience in adolescent medicine, including health-risk behaviors, but without defining the length of time that must be devoted to this discipline.118 Family medicine, on the other hand, has not yet incorporated specific adolescent medicine training requirements into its curriculum,119 presumably because of the view that training residents to provide comprehensive care to families axiomatically includes adolescents as well. The incorporation of adolescent medicine experiences into the resident curricula of pediatrics and internal medicine, however, is a relatively recent event, and it will be many years before all practicing pediatricians and internists will be appropriately skilled.
Financing
Even if all physicians were both interested and trained, providing care to adolescents in a manner that promotes compliance and behavioral modification is time intensive. Public and private third-party reimbursement rates do not reflect this fact and, when adolescents are given the time they need for counseling and anticipatory guidance, do not even compensate for overhead costs. This problem is even further compounded by the increasing emphasis on “productivity” and efforts to decrease health care costs by increasing the volume of patients seen in a given span of time. No specific coverage yet exists for comprehensive adolescent preventive services (see the following discussion of Guidelines for Adolescent Preventive Services). Coverage for mental health and substance abuse problems, often associated with high levels of sexual risk taking, has been substantially cut back in recent years and also is highly limited in availability.
A lack of adequate financing deprives many poor youths of even the most basic services. Yet poor adolescents are the ones at greatest risk of unintended pregnancy, teen parenthood, STDs, and HIV seropositivity. One in every seven adolescents has no public or private health insurance.120 Nearly one-third live in families with incomes at or below 150% of the federal poverty level, and one in three is not eligible for Medicaid/ Medi-Cal. These data do not take into account the ever increasing number
Even when adolescents are insured, they often are reluctant to seek out care for confidential problems out of concern for discovery if payment is dependent on their parents' or family insurance plan. It is virtually impossible to make a private third-party payer claim for a minor without the signature of the insured adult and without the latter receiving notice of claims made and paid. Equal barriers exist in public payment programs (Medicaid, Medi-Cal); a sticker or eligibility card generally must be presented before services can be rendered. These items usually are in the possession of parents, and adolescents do not have independent access to them.
The recent expansion in managed care and health maintenance organizations (HMOs) poses both problems and solutions. In prepaid systems, it becomes possible for adolescents to gain independent access and see a provider without the need for parental payment authorization for each visit. Whether this actually does occur depends on the policies of the particular program in question, and this is a variable matter. Some programs do provide for adolescent confidential care, while others continue to require parental permission for each visit, even though time may be spent with the teenager alone and confidences respected. One of the disadvantages of prepaid and managed care systems is the requirement that all members of a subscribing family receive care at a single location with no reimbursement for services rendered elsewhere. Adolescents may well require services at several sites, such as regular care by their personal physician or HMO and confidential care from a school-based clinic or family planning program. Increasingly, however, public managed care programs for low-income teens are beginning to recognize the unique needs of this age-group and to establish payment linkages between these various types of services.
Summary of Adolescent Health Care Delivery Issues
All in all, the mainstream health care delivery system for adolescents, while making some headway, still has room for considerable improvement. Key issues include inadequate professional training, inadequate reimbursement rates, insufficient visit time allotments to properly evaluate and counsel teens, access difficulties for youths seeking confidential care, and a large segment of economically disadvantaged adolescents who are uninsured.
There is considerable resistance on all fronts to dealing openly with adolescent sexual activity and denial of the fact that sexual intercourse is now a normal behavior on the part of at least half our nation's adolescents today. Nor have we effectively addressed the many problems such as poverty, poor schooling, and community violence that underlie the motives of those teens who see parenthood as a desirable state. Communities tend to resist the overwhelming evidence showing that sex education programs and the availability of contraception to adolescents do not promote an earlier age of coital debut and do not promote greater sexual risk taking.121,122 On the contrary, new sex education programs can, in fact, delay the initiation of sexual activity and, for those already involved, enhance contraceptive use and reduce the number of partners. In the past, policy makers have been all too reluctant to accept these facts and, instead, oppose the formation of services that will best assist adolescents in contending with their own sexuality and with the sexual pressures of the world around them in a responsible manner.
Fortunately, changes are being undertaken in federal administrative policy. In 1997, the U.S. Department of Health and Human Services established the National Strategy to Prevent Teenage Pregnancy and funded two new community grant programs at $1 million per year. The primary target group, however, is 9- to 14-year-olds, with a focus on helping communities to develop horizon-broadening opportunities for youth and experiences that they can say “yes” to. While such initiatives are critical to the solution of teen risk-taking behaviors, this still does not address the needs of those young people who remain at risk and need age-appropriate reproductive health services and effective sex education.
OPTIMAL ADOLESCENT HEALTH SERVICES
In 1992, 15% of the U.S. population (38.4 million) were 10- to 19-year-old youths. Of these, approximately 20% were living below the federal poverty line. Minority adolescents were disproportionately poor, with 43% of African-American teens and 38% of those of Hispanic ethnicity living in poverty as compared to only 15% of White adolescents.123 By the year 2000, the total population of adolescents will have increased by an additional 15%, with more than one-third being members of racial or ethnic minorities.124
We certainly cannot turn back the clock to a time when abstinence among unmarried individuals was the expected norm and governmental
Goals
Realistic goals for managing adolescent sexuality are, first, to foster delay in the initiation of sexual activity, at least until the young person is sufficiently cognitively mature to handle this in a responsible manner; second, to ensure that, when adolescents are sexually active, such activity is consonant with their own personal value codes and is not exploitative of themselves or others; and, finally, to support the consistent use of protection by sexually active youth against the risks of pregnancy, STDs, and AIDS.
The U.S. Public Health Service has established the following specific 10-year objectives relative to adolescent sexuality in its Healthy People: 2000 report: 127
- Reduce the number of pregnancies among girls aged 17 and younger to no more than 50 per 1,000 adolescents. (Objective 5.1)
- Reduce the proportion of adolescents who have engaged in sexual intercourse to no more than 15% by age 15 and no more than 40% by age 17. (Objectives 5.4, 18.3,and 19.1)
- Increase to at least 90% the proportion of sexually active, unmarried adolescents aged 19 and younger who use contraception, especially combined-method contraception that both effectively prevents pregnancy and provides barrier protection against disease. (Objective 5.6)
- Increase to at least 60% the proportion of primary care providers who provide age-appropriate adolescent care and counseling aimed at primary unintended pregnancy prevention. (Objectives 5.10 and 14.12)
Optimal Adolescent Preventive Care
The American Medical Association has developed a set of specific guidelines as a standard for teenage preventive care (Guidelines for Adolescent Preventive Services) calling for annual visits by all adolescents.128 The primary objective of these visits should be to identify both psychosocial and biomedical concerns and to provide anticipatory guidance. In the absence of specific complaints, physical examinations need be performed on only three occasions; once in early, middle, and late adolescence. Services should be age- and developmentally appropriate and sensitive to individual and sociocultural differences. Office policies should be established regarding confidential care and how parents will be involved in that care. Recommendations relating to sexuality include annual anticipatory guidance of all adolescents regarding responsible sexual behavior, including abstinence. All youths should be asked about their involvement in sexual risk-taking behaviors once a year. Those who are sexually active should be screened for STDs, should be given latex condoms for protection, and, if female, should be screened annually for cervical neoplasia. Appropriate methods of birth control also should be made available, as should instruction on how to use them. Adolescents at risk for HIV infection should be offered confidential HIV screening.
Optimal Adolescent Health Care Systems
The U.S. Congress Office of Technology Assessment,31 the Study Group on Adolescent Health of the National Academy of Sciences,129,130 the American Medical Association,128 the National Association of State Boards of Education,131 and the Carnegie Corporation 1 have all examined adolescents' health care needs in depth, are in agreement that these needs have been badly neglected, and call for essential change. Their recommendations have major implications for health care reform and include the following:
- All adolescents should be assured of access to services that provide affordable, accessible, and age-appropriate comprehensive care.
- These services should be located in schools and communities where adolescents live, should be easily reachable by walking or public transportation, should be available on a walk-in basis, and should be open during at least some evening and weekend hours.
- Young people should be able to go to these services by themselves. Confidential care should be provided when the nature of the adolescent's need is such that he or she would not seek out medical assistance otherwise. At the same time, parental involvement always should be encouraged.
- Health care providers who deliver care to adolescents should care about them, be effective in communicating with them, and be specifically trained in meeting young people's health care needs.
- High priority should be given to preventive and early intervention measures for health risk behaviors, including pregnancy, STDs, and AIDS.
- Close linkages and liaisons should exist with schools and other youthserving resources in the community. Integrated multidisciplinary and multimodal programs are particularly important. Educational programs should include a combination of personal skill-building and life-option components and be interactive in nature.
- Health services should be free or based on a sliding fee scale according to the adolescent's own ability to pay.
- Those adolescents who are insured under a family policy should have the ability to secure reimbursement for confidential services without risking disclosure.
- Provider reimbursement rates must be appropriate to the type of specialized services that adolescents need, including preventive anticipatory guidance and intervention counseling.
CONCLUSIONS
Adolescent sexual activity, with its potential consequences of pregnancy, STDs, and HIV infection, is the single largest health problem in this agegroup. Yet for many teenagers our current health care system does not address these problems very effectively, and our health care policies have not, until recently, held primary pregnancy and STD prevention in adolescents as a matter of high concern. Even though the nation is waking up to the problem, current policies primarily seek methods of promoting abstinence and still overlook the needs of the many youths who remain sexually active. Most adolescents are not provided affordable, accessible, and age-appropriate comprehensive care despite compelling arguments in support of this need and despite the recommendations of leading study groups.
Indeed, little attention has been given to adolescents by the health care sector except within the small group of specialized adolescent health care clinics that see only 5% of the nation's youth. The results are unacceptable costs both to the young person who must suffer the consequences of health care's neglect and to society, which must pay for it.
Current health care reform initiatives tend to make matters worse by limiting access to the health care system to a single point of entry where there would be no guarantee that the gatekeeping primary practitioner will have any competence in caring for youth or that confidential care will be an option. If managed care is to be the primary administrative structure for health care delivery in the future, adolescents should be able to choose their own managed care program or, minimally, have access to multiple health care sites. Their choices should include both office-based practices and alternative specialized adolescent health care programs, such as school-linked clinics, hospital-based and community-based adolescent medicine programs, and family planning clinics. All such special services should be covered and should not require referral from a primary care gatekeeper for reimbursement.
Further, there is a clear need for a substantial increase in effective sex education programs and in the number of school-based clinics; both are particularly necessary in reaching teenagers who so far have been underserved and comprise that portion of the adolescent population at greatest risk of pregnancy, STDs, and AIDS. There also is a need for both public and private third-party reimbursement systems that support the young people's comprehensive health care needs. We need to ensure that all primary health care providers are trained in adolescent health—particularly those who will be managed care's gatekeepers—and to develop resources to provide such training. We need to give as much time and concern to preventive interventions for adolescent sexual risk behaviors as we now do for younger children and their immunizations. And we need to establish specific objectives for preventive care interventions and ensure that they are met.
Admittedly, there is limited information about exactly what types of interventions are effective in modifying adolescent sexual risk-taking behaviors. We have some evidence that the initiation of sexual activity can be delayed by educational programs that are based on the health belief model and social inoculation theory and that employ an interactive learning approach. We also have some evidence that sexually active adolescents can be encouraged to be more effective users of protection against STDs and pregnancy when these matters are given high priority and
Research is needed in many areas. First, we need to know much more about adolescent sexual activity, including those factors that contribute to its initiation and what factors can delay it. We also need to know much more about the determinants of condom and contraceptive use. Areas that require additional study include the influence of the media and other aspects of our highly sexualized environment, the role of cognitive maturation on decision making, the role of parents and the nature of parent-adolescent communications about sexuality (not simply whether adolescents have ever talked to their parents about sex), the role of adolescents' perception about power and powerlessness, and the role of negative societal attitudes toward adolescents. We need considerably more research on how the health care and educational systems can effectively reach youth not only to delay their coital debut but also to influence those who are already sexually active to take consistent protective measures. We need more research on how to provide young people with early intervention and prevention counseling in the most cost-effective manner possible. And we need to examine how we can help parents be better communicators with their adolescents about sex. We also need more information on why physicians do not address adolescents' sexuality needs and what it would take to have them provide such services and to feel more enthusiastic about caring for this age-group.
In conclusion, I propose that access to age-appropriate care be provided to all adolescents and that teenage sexuality issues be fully addressed in any health care reforms. In particular, I propose that primary pregnancy prevention become a matter of the highest priority both for those who have not yet engaged in coitus and for those who are already experienced. No adolescent should have to make the choice between having an unintended baby and terminating a pregnancy in abortion, and no adolescent should have to risk STD or HIV infection because of a health care system that fails to provide for these needs. I further propose the establishment of multidisciplinary adolescent health research and training centers to find effective ways of influencing adolescent health risk behaviors and to train primary health care providers in these methodologies.
These initiatives will take commitment and courage in braving the criticism of those who seek only universal teen abstinence and rigorously
NOTE
Prepared for The University of California/Health Net Wellness Lecture Series, 1993.
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21. IMPROVING HEALTH AND SAFETY
IN THE AGRICULTURAL WORKPLACE
Marc B. Schenker
THE HISTORY OF OCCUPATIONAL HEALTH
AS AN AGRICULTURAL CONCERN
In one of the earliest references to occupational disease, the Swedish archbishop Olaus Magnus warned in 1555 in his Historia de Gentibus Septentrionalibus (History of the Nordic peoples) about the “damage to the vital organs of threshers from inhaling grain dusts” (1). This respiratory hazard of farmwork was again noted 150 years later by the Italian physician Bernadino Ramazzini in his seminal work on occupational health hazards, De Morbis Artificum (The diseases of workers) (2). While these early observations called attention to occupational hazards in agriculture, the field of occupational health has been driven, since the late 18th century, by the urban engines and industries of the industrial revolution, and this focus on heavy industry has continued to the present time.
The industrial revolution in Great Britain was a direct cause of numerous occupational and nonoccupational health hazards in British cities. Charles Dickens's Hard Times paints a grim picture of the filth and pollution in his fictional but realistic Coketown:
It was a town of red brick, or of brick that would have been red if the smoke and ashes had allowed it; but as matters stood it was a town of unnatural red and black like the painted face of a savage. It was a town of machinery and tall chimneys, out of which interminable serpents of smoke trailed themselves for ever and ever, and never got uncoiled. It had a black canal in it, and a river that ran purple with ill-smelling dye. (3)
Urban pollution and its associated public health hazards in Great Britain led to one of the earliest triumphs of epidemiology, the recognition
One English medical practitioner of note at that time was Charles Turner Thackrah (1795–1833). His seminal work, The Effects of the Principal Arts, Trades and Professions, and of Civic States and Habits of Living, on Health and Longevity, with Suggestions for the Removal of Many of the Agents Which Produce Disease and Shorten the Duration of Life (5), is particularly noteworthy because it focused on the prevention of disease by removal of workplace exposures. It was also prescient in its attention to bad occupational postures as a source of disability. But Thackrah's treatise failed to mention the hazards of agriculture except where those agricultural products, such as cotton, reached the urban mills and factories.
One can imagine that Thackrah and his contemporaries viewed the agricultural countryside as a healthy alternative to the filth and pollution of the industrializing cities and to the hazards of long work hours and terrible working conditions in the factories. This image of pastoral beauty, cleanliness, and health, reinforced by the artists of the time (6,7), supported the belief that agriculture itself was healthier, more wholesome, and more virtuous than urban industry. In the United States, this “agrarian myth” was embraced by Thomas Jefferson when he stated that “cultivators of the earth are the most valuable citizens. They are the most vigorous, the most independent, the most virtuous, and they are tied to their country and wedded to its liberty and interests by the most lasting bonds” (8).
These themes were echoed in the 19th century in the United States by Dr. Benjamin McCready, who noted in his treatise On the Influence of Trades, Professions, and Occupations in the United States, in the Production of Disease that “agriculture is the oldest, the healthiest, and the most natural of employments. The husbandman, in general, enjoys pure air, and varied and moderate exercise. In this country his diet is always abundant and nutritious, and his habits much more temperate than those of the manufacturing or laboring classes” (9).
The modern era of occupational health has also failed, until recently, to focus its efforts on the occupational hazards in agriculture. Dr. Alice Hamilton began her career by exploring the health hazards of lead and other heavy metals among working-class residents of Chicago (10).
One of the experiences that moved Dr. Hamilton from laboratory research to field studies was attending the International Congress on Occupational Accidents and Diseases in Brussels in 1915. At that meeting, Dr. Glibert of Belgium dismissed the subject of occupational health in the United States by stating, “It is well known that there is no industrial hygiene in the United States. Can'existe pas.” During the first half of the 20th century, industrial hygiene and occupational health were indeed more advanced in Europe than they were in the United States. While since then that situation has been corrected for heavy industry, the United States has continued to lag behind Europe in many areas of agricultural health and safety.
Agriculture was further removed from modern occupational health efforts by the Occupational Safety and Health Act of 1970, which excluded the agricultural workplace from the jurisdiction of the new Occupational Safety and Health Administration (OSHA) and its research counterpart, the National Institute of Occupational Safety and Health (NIOSH). This exclusion contributed to a drastic disparity in federal funding levels for occupational safety: In 1985, federal spending for safety was $181 per miner but only 30 cents per agricultural worker, or over $350,000 per miner death but only $600 per agricultural worker death (12).
There was finally an effort to correct the discrepancy in the late 1980s. In 1987, an international conference in Iowa City focused attention on the tragically high rates of occupational injury and fatalities in agriculture and on the diminishing local and federal resources for addressing the problem (12). That conference and the resulting report were instrumental in passing federal legislation in 1989 supporting several broad initiatives in agricultural health and safety. The momentum from this effort was continued with the Surgeon General's Conference on Agricultural Safety and Health in 1991 (13). Since 1990, most of the increase in NIOSH's extramural funding has been to support its programs in agricultural health and safety, a step toward correcting the agency's neglect of this area in its first two decades. Nevertheless, the NIOSH effort and other federal programs are still much too little to address the magnitude of the problem.
THE AGRICULTURAL WORKFORCE
In addition to overlooking the hazards of agriculture in espousing the agrarian myth, Jefferson ignored much of the workforce doing the farm-work—the southern slave population (including his own slaves). When he spoke about the valuable citizens and virtuous employment of the cultivators of the earth, he was certainly ignoring the unpaid, noncitizen slaves. This neglect of a large portion of farm labor continues even today. The “farm family” may evoke the classic iconography of Grant Wood's painting American Gothic, but that image is not an accurate one for much of the country.
The number of hired farmworkers, including migrant and seasonal workers, in the United States is greater than the number of farmers and family workers (14). Further, the number of persons residing on farms has been declining for the past 50 years, while there has been an increase in hired labor (15). But even these data fail to illustrate the dependence of U.S. agriculture on hired workers, which varies with specific commodities and farm practices. For example, the average labor requirement for fruits and vegetables is 120 hours per acre, compared to only three hours per acre for grains, and these laborintensive crops are farmed primarily by hired farm labor. Over 50% of hired farmworkers on farms employing more than 10 workers are located in California and Florida, two states with a predominance of high-value, labor-intensive crops. In California, there are 18 farmworkers for each farmer, and over 80% of farmwork is performed by hired labor.
Hired farmworkers are also demographically very different from family farmers (16). The population is young and predominantly male, foreign born, and Hispanic (Table 21.1). Almost half have less than eight years of education. This contrasts markedly with family farmers, who are an aging population, predominantly White male and U.S. born. The differences in income are also striking. One-half of migrant and seasonal farmworkers are below the poverty level, as defined by the U.S. Bureau of the Census, with a median family income of between $7,500 and $10,000 (16). Six of the 10 poorest Standard Metropolitan Statistical Areas in the United States are in California's Central Valley, and median family income is negatively correlated with employment in farmwork. In contrast, our study of California farm operators found that over 50% had a household income above $50,000 per
| Characteristic | Farm-workers | Farm Operators |
|---|---|---|
ana=not available. | ||
| SOURCES: Farmworker data from U.S. Department of Labor (1991 [16]). Farm operators data from U.S. Census of Agriculture, 1992. | ||
| Age | ||
| Under 25 years | 30% | 2% |
| 25–34 years | 35% | 9% |
| 35–44 years | 19% | 20% |
| 45–54 years | 8% | 22% |
| 55–64 years | 7% | 22% |
| 65+ years | 1% | 25% |
| Sex | ||
| Male | 71% | 92% |
| Female | 29% | 8% |
| Ethnicity | ||
| White (non-Hispanic) | 23% | 96% |
| Hispanic | 72% | 1% |
| African-American | 2% | 1% |
| Asian | 2% | 0.4% |
| Other | 1% | 1% |
| Education | ||
| 0–3 years | 16% | na[a] |
| 4–7 years | 32% | na |
| 8–11 years | 27% | na |
| 12+ years | 25% | na |
| Place of birth | ||
| U.S. born | 38% | na |
| Foreign born | 62% | na |
Globally, agriculture is even more dominant as a source of occupational livelihood and potential health hazards, although a detailed discussion of this topic is beyond the scope of this chapter (17). The size of the agricultural workforce relates inversely to level of development (17). In many developing countries, 70% or more of the economically active population are involved in agriculture (18).
OCCUPATIONAL FATALITIES AND INJURIES
IN AGRICULTURE
Jefferson may have ignored the occupational hazards of agriculture to the slaves who provided the labor for southern farms, but the facts amply demonstrate that the “agrarian myth” is just that—a myth. This myth was exploded by John Powers in a 1939 article in the Journal of the American Medical Association, in which he noted,
During the past quarter century the hazards of industry, transportation, mining and construction have been recognized; the economic value of safety has become clearly apparent and measures have been adopted to insure its promotion. For agriculture, because of its primarily individualistic character, there has been no such recognition or supervision, and farming, though the oldest occupation in the world, remains the most hazardous. (19)
Powers went on to note in a 1950 article that 26.6% of the occupational fatalities in the United States were in agriculture, and this was approximately 70% more than in manufacturing or construction (20). He also reported that over a quarter of a million people annually were estimated to incur a disabling injury in agriculture, resulting in more than six million days of lost time.
Perhaps John Powers's most prophetic observation was that the rate of fatal injuries in construction and transportation was declining, while it was increasing in agriculture. Over the past 50 years, there has been a significant decline in the work-fatality rates in mining and construction, but a comparable decline has not occurred in agriculture (Figure 21.1). A similar discrepancy has occurred for occupational injuries and illness over the past 20 years, with significant declines occurring in mining and construction but not in agriculture (Figure 21.2). While there may be many contributing factors to this absence of significant improvement in agricultural fatality and injury rates, the limited occupational health and preventive medicine programs and the exclusion of many regulatory efforts are likely to be contributing factors.
How do occupational health indicators for agriculture compare to those of other major industries? One direct measure of occupational hazardousness is the rate of unintentional work fatalities. According to the National Safety Council, agriculture had the highest rate of unintentional fatalities in 1993, with 1,100 deaths, or 35 deaths per 100,000 workers (Figure 21.3, Table 21.2) (21). This is higher than the rates for mining or construction, and while the exact rates may vary depending
Figure 21.1. Work-related death rates in U.S. industries. Source: National Safety Council (1994 [21]).
Consideration of farm residents paints an even worse picture, with 2,400 deaths in 1993, or 51 deaths per 100,000 farm residents (21). This reflects the hazards to farm family members, who are not counted among the agricultural worker totals. For example, there are nearly 300 deaths per year to children and adolescents from farm injuries, a particularly tragic statistic unique to agriculture, where the home and the workplace are the same (24).
Another perspective on agricultural fatalities is obtained from studies of cause-specific mortality in agricultural populations. The California Occupational Mortality Study found that the mortality rate for falls
Figure 21.2. Occupational injury and illness incidence rates by industry. Source: National Safety Council (1994 [21]).
Farm machinery is an obvious work hazard in agriculture and has repeatedly been shown to be the major cause of fatal work injuries. Farm vehicles account for approximately half the fatal farm injuries, and the majority of these deaths are due to tractors (21,27). Farm equipment, and specifically tractors, are also the predominant cause of fatal injuries to children in agriculture, accounting for approximately half the deaths
Figure 21.3. Work death rates by industry, 1993. Source: National Safety Council (1994 [21]).
| Industry | Workers (1000s) | Deaths | Death Rates[a] | Disabling Injuries |
|---|---|---|---|---|
aDeaths per 100,000 workers in each group. | ||||
| SOURCE: National Safety Council (1994 [21]). | ||||
| Agriculture | 3,100 | 1,100 | 35 | 130,000 |
| Mining, quarrying | 600 | 200 | 33 | 20,000 |
| Construction | 5,900 | 1,300 | 22 | 280,000 |
| All industries | 118,700 | 9,100 | 8 | 3,200,000 |
Data on occupational injuries and illnesses show similarly increased rates in agriculture. Agriculture consistently ranks with construction and manufacturing in having the highest incidence rates for occupational injuries and illnesses, based on Bureau of Labor Statistics data (21). Since these data exclude workplaces with fewer than 11 employees—a category that includes 95% of U.S. farms—the actual rates in agriculture may be much higher. Underreporting of injuries among migrant and seasonal farmworkers may also contribute to the underestimate of agricultural injuries. It is likely that this total is one-half or less of the actual rate (30). Nevertheless, in California alone, there are over
CHRONIC ILLNESSES AMONG FARMERS
While traumatic injuries are the most obvious cause of death and disability among agricultural populations, a wide range of chronic illnesses are also more prevalent in agriculture, putting another nail in the coffin of the “agrarian myth.” Chronic diseases also may be made worse for farmers and farmworkers because of barriers to health care in rural locations (32).
The National Health Interview Survey (NHIS) provides some perspective on chronic diseases and impairments among U.S. farmers (33). An analysis of health outcomes among 2,681 White male farmers found significantly increased age-adjusted prevalences of amputations, arthritis, cardiovascular disease, and hypertension among farmers compared to blue- or white-collar workers (Table 21.3). Although hearing loss was not more prevalent among farmers as a whole, it was significantly more prevalent in farmers over 65 years of age. Both asthma and chronic respiratory diseases were increased (70% and 30%, respectively), although not quite achieving statistical significance. Many of these findings are even more remarkable because cigarette smoking prevalence is lower among farmer populations, thus reducing the impact of one of the major preventable causes of chronic disease in society (34).
Mortality of farmers in California was significantly increased for many chronic illnesses, including cerebrovascular disease, chronic obstructive pulmonary disease, and cirrhosis (27). Studies of cause-specific mortality also have found increased suicide deaths among farmers, often attributed to the economic stresses of farming (35).
Finally, analysis of cause-specific mortality in 23 states found excess mortality among farmers from vascular lesions of the central nervous system, asthma, and several cancers, in addition to several types of fatal injuries (36).
CHRONIC ILLNESSES AND MORTALITY
AMONG FARMWORKERS
Data on chronic diseases and mortality among migrant and seasonal farmworkers are more difficult to obtain because of the lack of separate
| Age-Adjusted Prevalence (%)[a] | ||||||
|---|---|---|---|---|---|---|
| Condition | Farmers | 95% CI[b] | Blue-Collar Workers | 95% CI | White-Collar Workers | 95% CI |
aIndirectly age-adjusted using the employed population as the standard. | ||||||
bConfidence interval. | ||||||
| SOURCE: National Health Interviews Survey, 1986–1990. Reprinted from Brackbill et al. (1994 [33]). | ||||||
| Amputations | 3.1 | 1.3–4.9 | 1.4 | 1.0–1.8 | 0.8 | 0.6–0.9 |
| Arthritis | 11.7 | 8.8–14.6 | 9.7 | 8.7–10.7 | 6.8 | 6.0–7.6 |
| Cardiovascular diseases | 18.7 | 14.4–23.0 | 14.9 | 13.3–16.4 | 13.4 | 12.4–14.4 |
| Ischemic heart disease | 2.9 | 1.5–4.3 | 2.2 | 1.2–3.2 | 2.4 | 2.0–2.8 |
| Hypertension | 15.5 | 11.8–19.2 | 12.3 | 11.1–13.5 | 10.8 | 9.8–11.8 |
| Hearing loss | 11.6 | 8.5–14.7 | 13.0 | 11.8–14.2 | 10.2 | 9.2–11.2 |
| Skin cancer | 1.4 | 0.4–2.4 | 0.9 | 0.5–1.2 | 1.2 | 0.8–1.6 |
| Chronic respiratory diseases | 6.7 | 3.4–10.0 | 5.2 | 4.4–6.0 | 5.3 | 4.5–6.1 |
| Asthma | 5.2 | 2.7–7.8 | 2.8 | 2.2–3.3 | 3.5 | 2.9–4.1 |
| Back pain | 7.8 | 4.9–10.7 | 6.9 | 6.1–7.7 | 6.0 | 5.2–6.8 |
| All selected conditions | 76.0 | 66.0–86.0 | 68.1 | 64.1–71.9 | 56.9 | 55.0–59.9 |
Clinic-based surveys of farmworkers show that proportionately more health care is provided for acute, infectious disease problems and less for chronic diseases, such as hypertension (42). Among farmworkers, health problems are exacerbated by poverty, lack of access to health
Limited mortality studies among farmworkers provide evidence of increased mortality from infectious and parasitic diseases (45). Increased tuberculosis mortality has been specifically identified among farmworkers and farmers (28), consistent with recent data indicating an increased prevalence of tuberculosis among farmworkers in some parts of the United States (46).
SPECIFIC CHRONIC ILLNESSES AND HAZARDOUS
EXPOSURES IN AGRICULTURE
Respiratory Disease
A wide range of respiratory hazards exists within the agricultural workplace, often in concentrations much higher than in other industries (Table 21.4) (47–50). Most studies of respiratory hazards have focused on organic dust hazards, such as those that exist in hay barns, grain silos, and animal confinement units. These complex, antigenic exposures are associated with acute and chronic respiratory disease, including bronchitis, asthma, organic dust toxic syndrome, and hypersensitivity pneumonitis. Acute gaseous exposures to nitrogen oxides can occur in confinement situations and result in “silo-filler's disease,” which may range clinically from transient respiratory symptoms to acute pulmonary edema and death. In New York State, deaths occur from this exposure every year, with an estimated annual incidence rate of 5 deaths per 100,000 silo-exposed farmers (51). Respiratory morbidity and mortality are also common from exposure to animal confinement—generated gases, such as ammonia, chlorine, and hydrogen sulfide (50).
Chemical exposures cause respiratory disease, either directly affecting the respiratory tract or causing systemic illness via respiratory absorption. Paraquat is an herbicide that causes death from respiratory failure following ingestion and may result in respiratory morbidity from occupational exposures (52). Examples of agricultural chemicals absorbed through the lungs that cause significant morbidity and mortality include the fumigants phosalone and methyl bromide (53,54).
Recent studies have focused on inorganic dust exposures in agriculture, particularly in dry climates such as California and other western states (55). Exposures to dusts in agriculture may be substantially
| Agent | Examples | Sources | Diseases |
|---|---|---|---|
| Dusts | |||
| Organic | Grain, cotton, hay, endotoxin, vegetable fiber, sugarcane | Barns, silos, storage facilities, harvesting operations | Asthma, hypersensitivity pneumonitis, organic dust toxic syndrome (ODTS), byssinosis, chronic bronchitis |
| Inorganic | Silica (quartz), silicates | Soil-disturbing operations | Pulmonary fibrosis, chronic bronchitis |
| Gases | NH 3, H 2 S, NO 2, CH4, CO, CO2 | Silos, animal confinement facilities | Silo-filler's disease, acute tracheobronchitis, pulmonary edema, asphyxiation |
| Chemicals Herbicides | Paraquat | Applicators, storage | Pulmonary fibrosis |
| Fertilizers | NH3 | Storage containers | Mucous membrane irritation, tracheobronchitis |
| Miscellaneous | |||
| Solvents, fuels | Diesel fuel | Storage containers | Mucous membrane irritation |
| Welding fumes | NOx, O3, phosgene, metals | Welding operations | Bronchitis, emphysema |
Pesticide Illnesses
While most popular impressions of agricultural health hazards immediately focus on pesticides and other agrochemicals, these toxic agents actually account for only a small proportion of known disease and illness in the agricultural workplace in the United States and other developed countries. Conversely, pesticides account for a disproportionate share of the agricultural morbidity and mortality in developing countries (59). Nevertheless, many pesticides are potent systemic toxins and neurotoxins that result in acute illnesses and deaths each year, and the long-term effects of exposures are largely unknown. In California, where pesticide illness is reportable, there are over 1,000 acute illnesses among agricultural workers reported annually (60). The spectrum of acute effects, or “toxidromes,” from pesticides ranges from eye and skin toxicity to several systemic manifestations, including respiratory, gastrointestinal, central, and peripheral neurologic impairments (61).
Many chronic illnesses have also been associated with pesticide exposure, including cancer (62), respiratory insufficiency, chronic neurologic disorders (63,64), and miscarriage and other reproductive toxicity (33). While most of these findings have not achieved a scientific consensus as to causality, others have shown consistent, biologically plausible associations in several studies. An example of this latter situation is the association of lymphoma with exposure to the phenoxy herbicides (62,65,66). For other health outcomes, such as Parkinson's disease (64) and neurobehavioral impairment (63), provocative hypothesis-generating studies exist that require further investigation before any causal linkage can be confirmed. The possibility exists that cumulative low-level exposures or acute high-dose exposures may result in delayed adverse health effects (63). Surveillance of acute illnesses will not detect these effects, which occur years after the exposure.
Musculoskeletal Trauma
Many characteristics of farmwork typify ergonomic factors associated with an increased risk for musculoskeletal trauma and degenerative disorders. Farmwork often requires heavy lifting, commonly in abnormal postures. This situation exists for the farmer loading hay into a barn as well as for the farmworker harvesting fruit into bags while balancing on a ladder. Incorrect postures and whole-body vibration are associated with driving tractors and other farm equipment, and these factors increase
Is there evidence of increased musculoskeletal trauma and degenerative disease in agriculture? Poor ergonomic design is associated with increased traumatic injury, which is well established in agriculture, as noted previously. The NHIS found a significantly increased age-adjusted prevalence of arthritis among male farmers compared to other currently employed males (36). An analysis of U.S. workers' compensation injury data for agriculture showed that over one-third of claims were for strains/sprains, and one-half of these were for back injuries (68). Farmwork in the fruit and nut tree industry was specifically identified as having increased sprain and strain injuries, and the highest percentage of these were from back injuries caused by lifting. Other analyses of farmwork have identified manual lifting in the field by farmers as the greatest risk for low-back pain.
An Italian study of tractor drivers found significant reduction in spine mobility compared to a control population, a likely result of the ergonomic stresses of tractor driving (69). Other degenerative joint diseases are also more common in agriculture. For example, two studies of hip joint degeneration have found it to be significantly more common among farmers than among control groups (70,71). In one study, hip osteoarthritis was almost 10 times more common in those who had farmed for more than 10 years and was not associated with any single type of farming (70). There are little or no data on degenerative joint disease among hired farmworkers, although the nature of the work would suggest that these late-onset outcomes would be increased in frequency.
Noise-Induced Hearing Loss
Ample literature has demonstrated that excessive noise exposure is associated with high-frequency sensorineural hearing loss. Noise and vibration are integral parts of many agricultural operations. In one study, 75% of tractors without cabs had noise levels in excess of 90 decibels, the occupational standard and a level associated with increased hearing loss (72).
The NHIS found significantly increased hearing loss among farmers over age 65 (36). In a study of New York dairy farmers, 65% had high
Cancer
Agricultural workers are exposed to a wide variety of potential carcinogens, including chemicals and physical and biologic agents (76). Potentially carcinogenic chemicals include not just herbicides and pesticides but also solvents, oils, welding fumes, wood preservatives, and other chemicals used on the farm. Ultraviolet radiation from sunlight is a physical factor directly associated with skin cancer, and biologic agents of particular concern in agriculture are viruses associated with farm animals.
Analysis of U.S. mortality data and numerous other data sources indicates that male farmers have excess mortality from cancers of the lymphatic and hematopoietic systems, lip, eye, brain, and prostate (39,65). Other cancers are increased among farmers, including cancers of the pancreas, kidney, and bone, but with less consistency. Farmers have decreased mortality from cancers of the lung and bladder, in large part because of their lower prevalence of cigarette smoking.
Most etiologic studies have focused on chemical agents, particularly pesticides. The data are consistent for an association of phenoxyacetic acid herbicides—in particular, 2,4-dichlorophenoxyacetic acid (2,4-D)—with a two- to eightfold increase of non-Hodgkin's lymphoma in studies conducted in Sweden, Kansas, Nebraska, Canada, and elsewhere (66).
Skin cancer is increased among farmers, and exposure to sunlight, a known risk factor, during work is the likely etiologic factor (77). For other cancers, a consistent increase is observed among farmers, but specific etiologic agents have not been identified; for example, many studies have documented an increase in prostate cancer among farmers (78–80).
Stress
An often overlooked health problem in farming is stress. The numerous sources of stress on the contemporary farm include financial uncertainty and losses, intense time pressures, drought and other natural disasters, intergenerational conflicts, and health and safety concerns (81). Manifestations
Other Chronic Diseases
Many other chronic health conditions may be increased in agricultural populations, although specific etiologic factors often have not been identified. Dermatitis is increased in agriculture and may significantly contribute to workplace morbidity, although it is rarely a cause of death (85). Numerous agricultural exposures may result in adverse reproductive outcomes, including miscarriage, infertility, and birth defects (33). A few specific risk factors have been identified, such as the permanent infertility associated with DBCP (a nematocide) manufacturing (86), but most studies have observed ecologic associations and require further investigation (87) or require confirmation in different settings and investigation of specific mechanisms (88). Other chronic diseases that are increased in agricultural populations and that deserve further investigation and preventive efforts include cardiovascular and infectious diseases (26,36,39).
RECOMMENDATIONS FOR DISEASE PREVENTION
AND HEALTH PROMOTION
While occupational health and preventive medicine have only recently focused much attention on the agricultural workplace, these recent efforts and increased resources suggest that progress can be made in reducing illness and injury among farmers and farmworkers. The first step, recognition of the problem, was greatly advanced with the Surgeon
The classic approach to occupational disease prevention involves a combination of the triad of engineering, education, and enforcement. I believe that each of these has a role to play in preventing illness and injury in agriculture, and I will highlight a few examples. It is important to note that approaches to this problem are complex and multidisciplinary, and solutions must be sensitive to the unique needs and requirements of farm families. Approaches to some of these problems may require the input of epidemiologists, occupational health specialists, pediatricians, behavioral scientists, sociologists and anthropologists, agricultural engineers, media experts, public health officials, educators, regulators, and farm family members and farmworkers themselves.
Engineering
One of the most dramatic engineering solutions to an agricultural health problem is the rollover protective structure (ROPS) for tractors. Tractors are the most common cause of fatal farm injuries, and tractor overturns are the single most important cause of tractor-associated fatalities, accounting for over 50% of fatalities (27,91). The rate of tractor-associated fatalities has not changed in the United States for the past 15 years. In Sweden, the annual fatality rate from tractors overturning was reduced from 12 per 100,000 farmers in 1961 to 1 per 100,000 farmers, or virtual elimination, in 1981 (92). This dramatic reduction was achieved by a 1959 law mandating ROPS on all new tractors, followed by a 1978 law prohibiting the use of tractors without ROPS. In Iowa, of 90 tractor overturns analyzed, there were no fatalities involving tractors with ROPS (93). The persistence of traumatic fatalities in the United States from tractor rollovers, when an engineering solution exists and has been
Many other agricultural hazards exist for which engineering solutions can and should be the first approach to exposure or injury prevention. For example, power takeoffs (PTOs) account for approximately 7% of tractor-related fatalities. Designing a simple, effective, and inexpensive guard for PTOs should be a high priority for reducing the morbidity and mortality associated with this piece of farm equipment.
Engineering solutions should also be developed to detect hazardous situations or to reduce the levels of exposure to toxins. For example, inexpensive monitors could be developed to detect excessive levels of endotoxin or toxic gases in enclosed farm environments. Farm equipment could be designed to be quieter, and monitors could signal excessive noise levels. Chemical exposures could be reduced by further development of enclosed systems for pesticide mixing and use and improved personal protection against agrochemicals in various climates. In general, the design and development of farm equipment should include consideration of potentially hazardous exposures in addition to improved production efficiency.
Education
Education is a fundamental element of any strategy to address agricultural health and safety issues. To be most effective, this effort should be directed to several audiences. These include the following:
- Farmers and farm family members, to increase their awareness of hazardous farm conditions and their knowledge of hazard reduction, proper equipment usage, and the proper emergency response to acute injuries and illnesses. Parents should also understand the importance of adequate supervision on the farm and the need for children to have ageappropriate tasks.
- Farm children, to increase their knowledge of farm safety and their ability to recognize hazardous situations.
- Rural residents, to promote general awareness of these issues and knowledge of first aid procedures.
- Primary care physicians and health care providers, who are often the only medical contacts for farmers and farmworkers.
- Hired farmworker populations, to educate this population by increasing
― 605 ―awareness of agricultural health hazards. An education must be culturally and linguistically appropriate.
- Agricultural extension agents.
Many potential avenues exist for these educational efforts, including schools in rural areas; volunteer organizations such as 4-H, FFA, and Farm Safety for Just Kids; and the popular media.
Educational efforts to promote farm safety have existed for decades, but there has been little improvement in agricultural injury or fatality rates. This does not mean that education should be abandoned but rather that it should be done more selectively and effectively. Educational efforts should be formally evaluated to determine their effects on knowledge, behavior, and, ultimately, health outcomes. It is no longer adequate to simply print up a poster or a brochure and expect that its existence or distribution will address the problem. Modern media and the behavioral sciences have developed powerful tools for affecting behaviors in the marketplace, and these can be applied to health and safety in agriculture and other work locations. These tools have been applied effectively, for example, to reducing cigarette smoking and other cardiopulmonary risk factors for disease. The marked decline of cigarette smoking in California, home to an aggressive antismoking campaign, provides dramatic evidence of the effectiveness of these methods. A review of the medical literature identifies hundreds of articles on strategies for reducing cardiopulmonary risk factors, including effective approaches with minorities and other special populations (94). In dramatic contrast, a search of the literature for behavioral interventions in agriculture turns up only a handful of articles.
Enforcement
Regulation has a role to play as one approach to improving farm health and safety, but its role must be both realistic and appropriate. The large number of small farms spread across the country means that most regulations would have little or no chance for enforcement. Small family farms also have few resources for additional regulatory burdens, such as record keeping, industrial hygiene assessments, or complex engineering changes. For large corporate farms, where resources do exist for the implementation of appropriate health and safety regulations, a more traditional industrial approach to health and safety may be possible. Some
Enforcement efforts should also focus on labor regulations for hired farmworkers as has recently been done in California with the joint CAL/OSHA and U.S. Department of Labor Targeted Industries Partnership Program (TIPP) (95). This novel program developed the first comprehensive electronic database of farm labor contractors and crew leaders who operate in California. This merged file made it possible for all agencies to cross-verify registration and license records, utilize the files for outreach to local employers, and develop strategies for education and enforcement. Subsequent work included adding compliance history information concerning specific labor contractors. Compliance records are utilized to schedule inspections, particularly involving contractors with a history of repeated citations.
Research
It is critical that research be done to identify the specific health hazards in agriculture, the factors that cause or contribute to those hazards, individuals at increased risk of disease or injury, and the effectiveness of proposed or attempted interventions. The Surgeon General's Conference noted several priorities for research to reduce agricultural injury and illness (13). These include the following:
- Better characterization of risk factors and specific physical, chemical, and biologic health hazards
- Research to address the effects on chronic diseases of combined exposures and repeated acute exposures
- Epidemiologic investigation of the safety and health problems of special populations (e.g., migrant workers, children, and women) and of regional patterns of injury and disease
- Research on intervention strategy alternatives (e.g., education, regulation, and engineering controls), protective technology, the efficacy of standards, and the role of personal actions
The Conference also identified the need for more surveillance of agricultural injuries and illnesses and for interventions in the areas of hazard elimination, passive controls, and behavioral changes. These intervention efforts must include appropriate evaluation of their effectiveness in reducing agricultural injuries and illnesses.
Recent work at the University of California, Davis, has identified risk factors for increased agricultural disease. In a study of agricultural dust exposure, a cause of adverse respiratory symptoms, specific factors associated with increased (and decreased) dust exposure were identified (96). An investigation using statewide pesticide illness surveillance and use data identified high risk factors for pesticide illness among agricultural workers in California (97). These studies are important for the prevention of respiratory disease and pesticide illnesses because they identify high-risk groups for whom educational efforts and engineering interventions will have the greatest benefit.
Other research by Davis investigators has focused on improving the standard cholinesterase assay used to measure pesticide exposure (98). With regard to California clinical testing of cholinesterase, they have found that systematic errors in the testing of blood enzymes, especially the cholinesterase of the red blood cells, introduced errors of at least 40% in the values. The application of these findings involves development and dissemination of new, more accurate methods of cholinesterase testing for medical surveillance of agricultural workers and for use in clinical research. This work is an example of agricultural health research, moving from fundamental mechanisms to application, outreach, and intervention.
THE FUTURE
Agriculture is an occupation whose hazards have historically been ignored in the United States. Other occupations thought to be “inherently” hazardous, such as mining, have seen dramatic reductions in injuries and illnesses at the same time as more productive technologies have been instituted. Unlike mining, agriculture has not suffered the sort of mass disasters that catalyze action and resources to address a problem; nevertheless, there is now increased recognition of the hazardous nature of agriculture, and the situation is changing.
Approaches to injury and illness prevention in agriculture must use modern techniques of disease prevention and health promotion. They
NOTE
This work was supported by the National Institute for Occupational Safety and Health (NIOSH) cooperative agreement (U07-05) and by an award from The California Wellness Foundation and the University of California Wellness Lectures Award Program.
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22. ENHANCING WOMEN'S HEALTH
Current Status and Directions
in Research and Practice
Annette L. Stanton,
Sharon Danoff-Burg, and
Sheryle J. Gallant
Attending a university reception with a colleague some years ago, I (A.L.S.) reacted strongly when he referred to a study regarding the link between caffeine consumption and heart disease, which had just received considerable media attention (Grobbee et al., 1990). “I guess our hearts are safe if we have a cup of coffee,” he said. “Your heart may be safe; I have no idea about the safety of my heart! That study was conducted on over 45,000 men,” came my retort. Thus began a discussion of how little the scientific community knew, from either a psychological or a biomedical perspective, concerning many facets of women's physical health. Indeed, had this chapter been written only a decade ago, we would have had much less to say. Today, owing to the realization by researchers and practitioners that to understand women's health we need to study women and to include gender in conceptualizations of health and illness, the knowledge base in women's health is evolving rapidly. Rather than providing a review of the content of this large literature in this chapter (for comprehensive treatments, see e.g., Blechman and Brownell, 1998; Gallant et al., 1997; Stanton and Gallant, 1995), we first highlight historical and recent developments in the area. Specifically, it is important to understand the criticisms that have been leveled against the traditional body of thought regarding women's health and to be aware of the exciting initiatives designed to redress some of the deficiencies in earlier models and policies. We then provide recommendations for
WHAT IS A HEALTHY WOMAN? THE SOCIAL
CONSTRUCTION OF WOMEN'S HEALTH
Observers of the literature on women's health have pointed out that health itself, and women's health in particular, are socially constructed phenomena (e.g., Corea, 1985; Ehrenreich and English, 1978; Travis, 1988). These writers argue that conceptualizations of women's health reflect prevailing sociocultural standards concerning women's proper place in the world. Lawrence and Bendixen (1992) illustrated this point through their analysis of depictions of male and female anatomy in medical texts. They first outlined two historical approaches to conceptualizing female and male anatomy: hierarchy and difference. Dominant from the time of the classical Greeks through the mid-17th century, the hierarchical approach framed women and men as sharing similar basic biological structures, albeit in imperfect form in women. They quoted Aristotle—“For the female is, as it were, a mutilated male” (p. 926)—to exemplify this understanding of female anatomy.
By contrast, post-17th-century writers began to present women's anatomy as quite distinct from that of men's. To illustrate the concept of difference, Lawrence and Bendixen (1992) quoted Sachs, a German physician, writing in 1830: “The male body expresses positive strength, sharpening male understanding and independence, and equipping men for life in the State, in the arts and sciences. The female body expresses womanly softness and feeling. The roomy pelvis determines women for motherhood. The weak, soft members and delicate skin are witness of woman's narrower sphere of activity, of home-bodiness, and peaceful family life” (p. 926). Other writers have pointed out that the scientists and physicians of the late 1800s used accepted scientific theories to promote the primacy of the maternal role for women (Travis, 1988). For example, Helmholtz's principle of energy conservation was used to support the proposition that because women's most important function was reproduction, it followed logically that other biological structures, especially those involved in intellectual pursuits and physical activities, could not and should not function at maximum capacities in women (Travis, 1988). Further, the purported primacy of cyclic biology and hormonal function in women is illustrated by one physician's (Virchow,
Returning to the present day, Lawrence and Bendixen (1992) found in their analysis of medical texts between 1890 and 1989 that although 63% of anatomy illustrations in medical texts they reviewed were not gender specific and that text space devoted specifically to males had declined over the century, medical texts in 1989 still evidenced a disproportionate use of male-specific figures and descriptions. Further, male structures often were presented as the norm with female as the variation, and female-specific content was at times vague or inaccurate.
These findings illustrate two primary contentions of social constructionists—that scientific and professional treatments of women's health have served (1) to perpetuate the view of male as normative and female as deviation from the norm and (2) to promote a focus on women's reproductive function to the exclusion of other aspects of health. Recent evidence also suggests that the social construction of women's health is apparent in researchers' selection of topics for study and in their interpretation of data (e.g., Meyerowitz and Hart, 1995; Stanton and Dan-off-Burg, 1995). Fortunately, today many researchers are investigating women's health concerns in their own right, are broadening their focus to encompass a host of areas in addition to reproductive health, and are framing answers to the question “What is a healthy woman?” in terms of women's own experience.
HOW SHOULD WOMEN BE TREATED? DIFFERENTIAL TREATMENT OF WOMEN'S HEALTH CONCERNS
According to a number of writers, medical treatment for women in the United States is a reflection of women's subordinate status, and many point out that differences exist in health care for women and men that cannot be explained completely by differences in morbidity or illness behaviors (e.g., Ehrenreich and English, 1978; Travis, 1988). Differential treatment of women's health concerns is illustrated in a report of the Council on Ethical and Judicial Affairs of the American Medical Association
The disadvantaged status of women, and particularly older women and women of color, also is reflected in their being more likely to live in poverty and to be unemployed than men. A result is that women are less likely to have adequate health insurance and access to health care. Given the consistent finding that lower socioeconomic status predicts less positive health outcomes even when controlling for access to health care (Adler et al., 1994), the disadvantaged status of women is of particular importance.
Another consequence of gender inequality has been the historical lack of participation of women in the upper echelons of the medical profession and the behavioral sciences. Indeed, the American Medical Association elected its first female president in 1997. Although women now are entering medical training in record numbers, women's relative nonparticipation is important because it may account in part for the lack of attention to women's health concerns and for less adequate treatment of women. For example, Lurie et al. (1993) found that male physicians were less likely than female physicians to refer their female patients for cancer screening (i.e., Pap smears, mammograms) or to perform such tests. Increased entry of women into important roles as researchers, practitioners, and policy makers may serve to improve attention to and increase effectiveness interventions for women's health concerns.
Many questions remain regarding differential treatment of women's health concerns, including the following:
- To what extent are gender disparities in specific medical diagnostic and treatment procedures accounted for by biomedical versus psychosocial factors?
- How often and in what contexts does a gender disparity reflect underattention to women's health or unnecessarily excessive attention to men's?
- Is it important to tailor medical and behavioral treatment strategies specifically for women, such as gender-sensitive interventions for alcohol abuse or smoking?
- Should research and practice in women's health be established as a distinct specialty within medicine and health psychology, should such activity be integrated into already existing structures, or should both integration and specialization be encouraged (Angell, 1993; Harrison, 1992; Rosser, 1993; Wallis, 1993)?
It is through addressing such questions that we will be able to facilitate optimal health care for women.
WHERE ARE THE WOMEN? THE EXCLUSION
OF WOMEN AS PARTICIPANTS IN RESEARCH
Perhaps more than any other limitation, exclusion of women as research participants (Bennett, 1993; Johnson, 1992; Travis, 1988; U.S. General Accounting Office, 1990) has constrained progress in the area of women's health. This is most apparent in large clinical trials conducted solely on men, including those on the prophylactic effects of aspirin for cardiovascular disease, performed with more than 22,000 men (Steering Committee of the Physicians' Health Study Research Group, 1988), and on the identification of risk factors for coronary heart disease, in which more than 300,000 men were screened and more than 10,000 included in the clinical trial (Multiple Risk Factor Intervention Trial [MRFIT]; e.g., Ockene et al., 1990). Examples from the psychosocial literature also exist, including the relative absence of research on Type A behavior, hostility, and other psychosocial risk factors for heart disease in women (Baker et al., 1984; Shumaker and Smith, 1995; Wenger et al., 1993). Further, some have argued that the experience of and treatment for some female-prevalent health conditions, such as osteoporosis and systemic
Several purported barriers to inclusion of women in clinical studies have been identified (Bennett, 1993; USPHS, 1985). These include (1) the responsibility to protect the reproductive capacity of women in their childbearing years and to protect the fetuses of pregnant women; (2) the need for convenient recruitment of participants and for easily identifiable cohorts (e.g., the Physicians' Health Study participants, who were recruited via the American Medical Association roster); (3) the potentially higher costs resulting from inclusion of women, given that women have lower mortality rates than men, and mortality often is the end point studied; (4) the need to recruit participants at high risk for the disease end points being examined (e.g., men's higher mortality rates for heart disease among particular age cohorts); (5) the goal of achieving homogeneity in study samples, thus not having to consider women's hormonal variation; and (6) the assumption that women are less likely than men to participate in clinical trials, to adhere to prescribed medical regimens, or to agree to random assignment (note that there is no empirical evidence for this assumption).
Specific neglect of poor, ethnic minority, and older women is apparent in the literature on women's physical health (Gatz et al., 1995; USPHS, 1985) and on aspects of women's psychological adjustment (Reid, 1993; Yoder and Kahn, 1993). This is of particular concern in light of the evidence that poor and ethnic minority women in general are at risk for greater morbidity and mortality than are their more affluent and White counterparts (USPHS, 1985). Moreover, older women are at risk for contracting multiple chronic conditions (i.e., comorbidities), may take multiple prescription medications, and, because of their greater likelihood of living in poverty than men, often are subject to inadequate health care (USPHS, 1985).
Consequences arising from the exclusion of women as research participants are profound. We know less about biological and psychosocial risk and protective factors for diseases in women than in men, and often the generalization of findings from studies on men's health and disease has occurred in the absence of knowledge of their applicability to women. Insufficient information exists regarding how endogenous and exogenous (e.g., oral contraceptives) hormones may interact with medications to affect the potency of medical treatments. Women (and sometimes fetuses in utero) are subject to pharmaceutical agents, medical
Fortunately, recent investigations suggest that the barriers to inclusion of women in health research are crumbling. Positive modifications in institutional and government policies will create pathways to knowledge about women's health and will diminish the necessity for the question “Where are the women?”
THE GOOD NEWS: NEW DIRECTIONS
IN ATTENTION TO WOMEN'S HEALTH
In 1985, documented recognition that the health concerns of women require substantial empirical attention occurred at the federal level. In that year, a report was released on the health status of American women by the Public Health Service Task Force on Women's Health Issues (USPHS, 1985). The following year, the National Institutes of Health (NIH) announced that all researchers applying for NIH funding should consider the inclusion of women in clinical trials or provide a clear rationale when women are excluded. However, in 1990 the U.S. General Accounting Office (GAO), the investigative arm of Congress, reported that few researchers were aware of this policy and that some scientific review panels had been instructed not to consider the inclusion of female participants as a criterion for evaluating the merit of a research proposal.
Along with other catalysts, the GAO report spurred the introduction in Congress of the Women's Health Equity Act of 1990. This act, developed by the Congressional Caucus on Women's Issues and introduced by Representatives Patricia Schroeder and Olympia Snowe, was designed to address deficiencies in women's health care in the areas of research, treatment, and prevention. Composed of 20 separate provisions, the bill proposed mechanisms for ensuring inclusion of women in study populations and bolstering empirical attention to women's health. Also proposed was authorization of funding for research, treatment, and prevention initiatives in women's health, including cancer, osteoporosis, reproductive health, AIDS, and sexually transmitted diseases. Many of these provisions saw favorable action in Congress, and others were introduced under the Women's Health Equity Act of 1993. A critical feature of this initiative's impact is that annual federal funding for breast cancer programs has increased from less than $100 million in 1990 to more than $600 million by 1997 (Blumenthal and Wood, 1997).
The establishment o f the Office of Research on Women's Health represents another encouraging step in addressing a broad range of women's health concerns. This office, proposed in Congress and founded by the NIH in 1990, is charged with the coordination and oversight of efforts to enhance women's health research at the NIH. Its mission encompasses specifying pertinent research needs, supplementing extant funds for research on women's health, coordinating efforts among the various institutes, and promoting women's entry into and advancement in scientific careers. The office also monitors the inclusion of women in study populations, which now is mandated by the NIH unless a clear and compelling rationale for their exclusion is provided (NIH, 1994). Yet another stimulus for women's health research is the revision by the Food and Drug Administration (FDA) of a 16-year-old policy that excluded most women of reproductive age from the initial phases of clinical trials. The FDA's formal statement to drug developers that women should be represented sufficiently in drug studies and that appropriate statistical analyses for sexrelated effects should be undertaken also is encouraging (Merkatz et al., 1993).
Federal attention to women's health set the stage for the development of the Women's Health Initiative, the largest clinical trial ever conducted in the United States. Following women aged 55 to 79 for up to 12 years, the initiative will investigate contributors to and treatments for important causes of death and disability among women, including cardiovascular disease, breast and colorectal cancer, and osteoporosis. An observational component is included; a randomized, controlled trial will test the efficacy of hormone replacement therapy and nutritional interventions in preventing major diseases; and psychosocial and behavioral factors will be investigated. Important implications for promotion of women's health and prevention of disease may be anticipated as findings from this large-scale study emerge.
DIRECTIONS IN RESEARCH, PRACTICE,
AND POLICY IN WOMEN'S HEALTH
Promising developments at the federal policy level and in the empirical knowledge base provide encouragement to researchers and practitioners interested in women's health. A growing awareness exists among scientists that women's health concerns represent a crucial area for intensive study. However, progress is uneven, and many questions remain. In this section, we delineate themes that cut across substantive areas and identify
CONCEPTUAL FRAMEWORKS IN WOMEN'S HEALTH
Research and practice in women's health will benefit from: (1) applying biopsychosocial models to the study and promotion of women's health;(2) promoting an expanded definition of health that includes psychological, functional, and social status as well as biological end points;(3) focusing increasingly on positive health outcomes in addition to morbidity and mortality; (4) incorporating established theories and considering multiple contextual determinants of health outcomes; and (5) considering women's diversity.
The Need for Biopsychosocial Models
In contrast to adhering strictly to a traditional biomedical model, the advantages of exploring interactions among biological, psychological, and social factors in order to understand health and disease have been documented for some time (Engel, 1977, 1980; Schwartz, 1982). The importance of assuming a biopsychosocial approach to research in women's health is highlighted by Hamilton's (1993) contention that “the social construction of gender implies that women's health can be understood only by a better appreciation of psychosocial aspects of women's lives, along with more integrative biological research. Indeed, every health discipline, with the notable exception of medicine, recognizes that psychology and the social sciences must be central to and at the very core of a woman-centered women's health movement” (p. 51). Several lines of evidence converge to suggest that psychological and social factors are prominent determinants of the health of women.
One such line of evidence comes from research exploring explanations for sex-related differences in mortality and morbidity. Echoing the observations of many researchers (e.g., Rodin and Ickovics, 1990; Strickland, 1988; Verbrugge, 1990), Riley (1990) cited a “familiar but still puzzling paradox: in the United States today, on the average, at every age women report more illness and health care utilization than men, yet life expectancy is consistently higher for women than for men” (p. vii). Indeed, in all economically developed countries, females' mortality
Certainly, sex differences in mortality and morbidity are accounted for in part by biological influences. These include such factors as the lack of genetic redundancy on the Y chromosome and other chromosomal influences (e.g., Smith and Warner, 1990; Travis, 1988), the protective effect of estrogen with regard to heart disease (e.g., Hazzard, 1990), and sex-related differences in neuroendocrine and cardiovascular response to stressors (e.g., Matthews, 1989; Polefrone and Manuck 1987). Psychological and social influences also play an important role. Health-related behaviors constitute one category of contributors. Changing sex differences in mortality, for example, can be attributed in part to changes in the behavior of cigarette smoking (Waldron, 1993). Although perhaps of lesser impact than smoking (Nathanson, 1990), other behaviors that confer health risk, including dietary practices, alcohol use, hazardous employment, unsafe sexual practices, lack of physical activity, reckless driving, and violent acts, also may produce differential impact on female and male morbidity and mortality (Verbrugge, 1990; Verbrugge and Wingard, 1987). Gender differences in illness and prevention orientation, including perception of symptoms, readiness to take preventive and curative actions, and health-reporting behaviors, also may contribute to morbidity and mortality differences (Verbrugge and Wingard, 1987). Furthermore, biological, behavioral, and social characteristics may interact to predict health risk in women and men (Matthews, 1989; Ory and Warner, 1990).
Other areas of inquiry also have illuminated the critical role of behavioral and psychosocial influences on women's health. For example,
Studying psychosocial, biological, and behavioral factors in isolation has contributed to fragmentation in research and health care. Rather, examining links among these factors may better serve to advance research and application in women's health. For example, depression may be associated with such health behaviors and outcomes as smoking maintenance (Mermelstein and Borrelli, 1995), diabetes (Butler and Wing, 1995), and cardiovascular disease (Shumaker and Smith, 1995). Marcus et al. (1995) cited research suggesting that participation in exercise may help women quit smoking. Conversely, the traditional biomedical model also may promote the treatment of isolated organ systems rather than the whole woman with complex and interacting health care needs. How is a woman to decide on electing exogenous hormone administration when it may confer benefit with regard to preventing heart disease but risk with regard to developing cancer (Barrett-Connor, 1994; Hulka, 1994; Lobo and Speroff, 1994)? Is women's optimal health promoted when researchers construct protocols that provide incentives to women for attending cancer screening but do not offer simple blood pressure checks at the same appointment? Research that prevents such fragmentation through examination of multiple determinants of multifaceted health outcomes is clearly indicated.
The Need for an Expanded Definition of Health
Not only are psychosocial factors significant contributors to health status, they also represent important end points in health research. Calls for increased empirical and applied attention to health-related quality of
The Need for a Focus on Positive Health
Processes and Outcomes
We propose that the adequate conceptualization of multifaceted health outcomes implies examination not only of pathological psychosocial and biological processes but also of salutory health effects. A traditional biomedical approach often promotes a focus on pathology rather than health, and women's biology and health often have been viewed through a lens of difference and deficiency. Although it surely is important to explore what leads to disease in women, it is equally crucial to acknowledge women's health-related strengths and to examine factors that promote their optimal health and well-being. O'Leary and Ickovics (1995) have advanced a model of resilience as applied to women's health, and other researchers have developed psychological constructs shown to be related to positive psychological and physical health outcomes in both women and men, such as optimism (Scheier and Carver, 1992) and hope (Snyder et al., 1991). It is important to develop biopsychosocial models that focus on women's resilience and health to offset what traditionally has been a pervasive focus on distress and disease.
The Need for Theoretically Grounded Research
Researchers also should be aware that maintaining a narrow focus on a specific disease or behavior may prove limiting with regard to theory testing and development. For example, much of the research on postpartum depression failed to benefit from established theories regarding depression in general (Stanton and Danoff-Burg, 1995). As Marcus and colleagues (1995) suggested, general theories of behavior change can serve as a foundation for understanding and promoting physical activity in women. Theoretically grounded work will advance the study of specific diseases, and focusing on psychosocial constructs and theories that cut across health outcomes and behaviors may prove even more beneficial.
The Need for Attention to Contextual
Determinants of Health
We observe that many of the theories and constructs applied to the psychology of women's health to date have centered on explanatory variables residing within the individual rather than in the sociocultural context of women's and men's lives. Women's reluctance to encourage condom use by their partners, for example, has been assumed to reflect women's health beliefs or lack of assertiveness rather than power differentials in intimate relationships (Morokoff et al., 1995). Depression following childbearing often has been assumed to be a result of biological upheaval rather than the demands that accompany assumption of the role of primary caretaker (Stanton and Danoff-Burg, 1995). Programs designed to promote exercise participation have focused on enhancing self-regulatory or other individual skills rather than addressing such barriers to activity as women's caretaking responsibilities or lack of convenient access to safe exercise facilities (Marcus et al., 1995).
A conceptual focus on intraindividual factors certainly is useful in accounting for some of the variance in health-related variables and in developing interventions to foster individuals' control over their health. However, narrow concentration on the individual woman and her internal attributes may result in misplaced blame for negative health behaviors and outcomes as well as in limited conceptual models and applications (see Bohan, 1993; Hare-Mustin and Marecek, 1990; Kahn and Yoder, 1989; Mednick, 1989; Prillentensky, 1989). Viewing a woman's “failure” to obtain a mammogram as reflecting her lack of interest in her own health, as opposed to attributing it to her physician's lack of referral or to her desire to devote all extra funds to her children's education, provides a considerably different conceptual picture and carries very different implications for maximally effective interventions. Contextual factors such as socioeconomic conditions, exposure to violence, ethnic and cultural norms, organizational (e.g., workplace) involvement, physical environments and hazards, and the sociopolitical milieu warrant far more theoretical and empirical attention (see Revenson, 1990, for other recommendations regarding conceptualizing contexts). The myriad positive and negative influences of interpersonal relationships on women's health also warrant continued attention. For example, interpersonal factors are potentially important determinants of women's drinking (Wilsnack, 1995), smoking (Mermelstein and Borrelli, 1995), exercise (Marcus et al., 1995), and sexual behaviors (Morokoff et al.,
The Need for Considering Women's Diversity
The recognition of contextual and individual differences among women highlights the need for considering issues of diversity in our conceptual models for women's health. Traditional disease-based approaches often have concentrated on the disease process itself, with minimal consideration of factors promoting vulnerability or resilience within the host or within the host's environment. Up to this point, we have addressed questions pertinent to conceptualizing “women's health.” However, this is not meant to imply that women comprise a homogeneous group. Indeed, many researchers have pointed out the likelihood that within-group differences among women are greater in many domains than are average differences between women and men (e.g., Hyde, 1994; Worell and Etaugh, 1994). Thus, when one asks how best to conceptualize women's health, perhaps the question “Which women with which characteristics in what contexts?” would provide a useful frame. To date, much of the documented psychology of women's health in the United States must be classified as the study of White, relatively affluent women. Inclusion in conceptual models of sociodemographic and lifestyle characteristics, such as age, ethnicity, socioeconomic status, sexual orientation, and family structure, may serve as a starting point for capturing women's heterogeneity. However, like gender, these characteristics may act only as proxy variables for a host of other psychological and social mechanisms, and fine-grained analyses of these mechanisms are necessary.
Summary
In advocating a biopsychosocial model, we are not recommending that discrete disease-focused research be stopped. Indeed, we believe that ample room exists for both keen empirical concentration on specific diseases or behaviors and integration across health and psychosocial domains. Our view is that the most useful conceptual models for women's
METHODOLOGICAL CONSIDERATIONS
IN WOMEN'S HEALTH RESEARCH
What considerations merit attention in designing research to examine women's health issues? Of course, a first step is to devise questions that carry the potential to advance our understanding and promotion of women's health. In doing so, researchers must examine their assumptions regarding wom en and the topic of interest and ask what conceptual frameworks will be most useful, as discussed previously. Meyerowitz and Hart (1995) argued, with regard to psychosocial research on women and cancer, that gender-biased assumptions may have influenced the nature of the questions and hypotheses advanced. In addition to questioning our own assumptions, involving our colleagues and our potential research participants in the initial stage of research conceptualization may prove beneficial. Several other sources also provide suggestions for examining these assumptions and decreasing biases in conducting research, such as avoiding sexism (e.g., Denmark et al., 1988; McHugh et al., 1986), heterosexism (e.g., Herek et al., 1991), ageism (e.g., Schaie, 1993), and ethnocentricism (e.g., Betancourt and Lopez, 1993; Graham, 1992; Zuckerman, 1990).
Another crucial step in study conceptualization is selecting the unit of analysis. As previously noted, selection of the individual as the unit of analysis has been most typical in women's health research and in much psychological and biomedical research in general. For example, Felton and Shinn (1992; Shinn, 1989) have suggested that even in research on social support, the individual most often has been the focus of study.
A number of different methodologies have been useful in advancing women's health research. Qualitative strategies such as intensive interviews and focus groups exploring women's experience regarding a particular issue may be especially helpful at the stage of hypothesis generation. Careful descriptive research is necessary in many areas, and longitudinal studies have the advantage of allowing researchers to gauge effects over time in natural settings and to assess the interplay of etiological factors as well as the long-term effects of interventions. Experimental investigations to explore causal relationships and to devise health-promoting interventions that subsequently can be tested in natural settings also are warranted. Feminist analyses have provided trenchant criticisms of the positivist, empirical tradition in science (e.g., Gergen, 1988; Harding, 1986; Keller, 1985; Riger, 1992), such as its assumption that science is value neutral and its emphasis on experimental control over external validity and the consequent tendency to decontextualize women's experience. We agree with Riger (1992) that no method is free of limitations, but given an awareness on the part of researchers of the value assumptions inherent in a research approach, a variety of methods can be of value in enhancing understanding and improvement of women's lives (see also Peplau and Conrad, 1989).
How should researchers in women's health construct their samples? Cogent arguments regarding the advantages and drawbacks of studying and reporting sex-related differences have been offered over the past several years (e.g., Baumeister, 1988; Eagly, 1990; Hare-Mustin and Marecek, 1990; McHugh et al., 1986). We suggest that the researcher's choice of study participants, whether females and males, females (or males) only, or a specific subgroup of females (e.g., reservation-dwelling Native American women), be guided by the questions and conceptual frameworks of interest. Certainly, study of underserved groups, such as poor women, older women, and women of color, is essential, as is inclusion
Development of reliable and valid measures is crucial for women's health research. Consideration of the appropriateness of measures for women in particular contexts is essential. It is important to establish the validity of measures of such constructs as Type A behavior and quality of life (Shumaker and Smith, 1995), alcohol use (Wilsnack, 1995), exercise behaviors (Marcus et al., 1995) and pregnancy-related adjustment (Stanton and Danoff-Burg, 1995) in women. It is vital to ensure that researchers not overestimate pathology in women by including as indicators of maladjustment those items that characterize women's normative experiences (e.g., weight changes in pregnancy mistakenly counted as a symptom of depression). In addition, development of measures of positive health indicators is warranted, as is greater attention to measurement of dependent variables reflecting health outcomes more likely to affect women, such as specific morbidities and comorbidity (Gatz et al., 1995; Verbrugge and Jette, 1994). Researchers in women's health need to investigate links between psychosocial and physical health variables on the basis of careful conceptualization and measurement of several sorts of indicators. This will require the researcher to cultivate knowledge in a number of realms or to initiate involvement in interdisciplinary research teams possessing expertise in psychological, social, and biological health domains.
APPLICATIONS IN WOMEN'S HEALTH
How should research be translated into interventions that will promote optimal health for women? A first question regards the targets at wh ich
The stakes are high for women with regard to how American health care is delivered and financed, for the economic and social circumstances that determine access to health care are less stable for women than for men (UCLA Center for Health Policy Research, 1996; Wunsch, 1997). Women are more likely than men to utilize the health care system and to be responsible for coordinating the care of others. They also are more likely to live in poverty, head single-parent households, and work in uninsured occupations.
According to the UCLA Center for Health Policy Research (1996), 20% of the female population aged 18 to 64 in California (two million women) were uninsured in 1993, compared with the national rate for women of 16%. Seventy-five percent of these uninsured women were of reproductive age. The majority had family incomes below 200% of the poverty level, even though 80% were employed or in families with at least one employed adult. However, lack of health insurance coverage is not limited to poor women; 20% of these women had family incomes over 300% of the poverty level.
For those who do have health insurance, managed care plans, particularly health maintenance organizations (HMOs), are serving a growing number of Americans. At present, approximately 20% of Americans receive medical care through a managed care plan, and this figure is expected to increase (Group Health Association of America, 1995).
The majority of those enrolled in HMOs are female (Bernstein, 1996). Historically, HMOs have provided more generous coverage of women's health services (e.g., reproductive care) and preventive services (e.g., cancer screening) than have traditional insurance plans (Bernstein, 1996). However, women enrolled in HMOs report that they are less likely to receive needed medical services, less able to reach their physicians when needed, and less satisfied with their physicians than women with other types of insurance coverage; however, these experiences vary by type of plan and geographic location (Collins and Simon, 1996).
Although managed care plans have the potential to provide comprehensive health care for women, they also present many challenges. Such challenges include making a full range of reproductive health services available; providing screening and treatment for problems such as depression, domestic violence, and substance abuse; attending to issues of confidentiality (e.g., health care for sexually active adolescents); defining appropriate primary care for women; giving women adequate consultation time with health care providers; and identifying and addressing risks posed by incentives to underserve (e.g., “drive-by” deliveries and mastectomies) (Weisman, 1996; Wunsch, 1997).
Considerably more research directed toward improving treatment of women in the health care system is warranted. Shumaker and Smith (1995) cited research that suggested that health care providers manage heart disease in women less aggressively than in men, and women are less likely to attend rehabilitation programs after a cardiac event. Wilsnack (1995) indicated that physicians are less likely to identify problem drinking in women than men. Roter and Hall (1997) reviewed evidence suggesting that female physicians conduct medical appointments differently than males, in a manner more facilitative of a biopsychosocial approach. Determinants of differential treatment require study, and interventions are needed to enhance health care providers' provision of effective treatment to women. In addition, physician training in psychosocial and behavioral aspects of women's health is required to optimize their care of women.
Strategies designed to support change in health behaviors of individual women and men also are necessary, although they may not reach maximal success without attention to structural or relational barriers to change. Targeting men's behaviors, including drug use, smoking, condom
In addition to considering appropriate targets for intervention, researchers must attend to the nature of the interventions. A primary challenge is to determine the varieties of content, format, and structure that will be most useful. One vital question regards the differential effectiveness of medical and psychosocial interventions for women and men. Although gender-related differences in treatment efficacy have not been tested in many realms, Butler and Wing (1995) demonstrated that women with diabetes may lose weight more successfully when treated with their partners and that men may be more successful when treated alone. Mermelstein and Borrelli (1995) found that women who smoke may prefer more formal smoking cessation programs and group treatment than do men. Identifying the mechanisms by which some interventions may be more effective for women than for men provides a fertile area for research. The question of what specific characteristics of health-promoting interventions render them most effective for which women (e.g., older women, women with young children) in which contexts is just beginning to be addressed. Again, meeting the diversity of women's health needs constitutes a central research challenge.
Researchers and practitioners also must be concerned with the consequences of interventions. We strongly advocate the inclusion of measurable outcomes so that the efficacy of interventions can be evaluated adequately. Both short- and long-range outcomes for individuals and larger social systems require scrutiny. Anticipating and attempting to minimize potential unintended, negative consequences of experimental interventions are critical to the research enterprise. For example, does instructing women in assertiveness with the aim of promoting condom use inadvertently misplace responsibility on women? Does encouraging
The current impetus toward initiatives designed to promote women's health is exciting; it is important that this momentum not outstrip empirical support for the approaches being advocated. Careful evaluation of intervention outcomes is essential.
Increasingly, those implementing interventions will be called on to demonstrate their cost-effectiveness. Butler and Wing (1995) cited evidence that preconception health care for diabetic women is cost-effective, and Sobel (1994) provided evidence that an array of psychosocial and educational interventions can lower health care costs. Such documentation will provide strong argument for changes in health care policy and practice to promote women's health. Finally, dissemination of interventions that are shown to be effective is an important goal. Use of the media and other sources to communicate information regarding research and application in women's health to women themselves, as well as to the community of researchers and practitioners, is a responsibility of those working in this area.
CONCLUSIONS
Considerable progress has been made toward building a solid knowledge base in psychosocial aspects of women's health. Several issues require attention if that progress is to continue. No single encompassing biopsychosocial paradigm emerges to characterize women's health; rather, the challenge is to scrutinize and build on existing theories where possible and to revise and reframe the body of knowledge, research methods, and application where needed to reflect more fully women's experience of health and well-being.
It is clear that health is not a univariate phenomenon; rather, it is a function of the complex interplay of economic, sociopolitical, environmental, psychological, and biological determinants, the formula for which varies over the life course and across diverse groups of women. This complexity underscores the need for multivariate models and methods as well as broadened interdisciplinary collaboration in research and application. It also highlights the need for continued intensive study of women's diversity and their commonalities with regard to health. While recognizing that a range of important issues remain to be addressed, there is cause for optimism about the pace at which our understanding
NOTE
This chapter was adapted and expanded from A. L. Stanton, Psychology of women's health: Barriers and pathways to knowledge (pp. 3–21), and A. L. Stanton and S. J. Gallant, Psychology of women's health: Challenges for the future (pp. 567–582), in A. L. Stanton and S. J. Gallant eds., The psychology of women's health: Progress and challenges in research and application (Washington, D.C.: American Psychological Association, 1995).
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23. CARDIOVASCULAR DISEASE IN WOMEN
Exploring Myths and Controversies
Amparo C. Villablanca
INTRODUCTION
Heart disease, a largely preventable disease, is the leading cause of death for women. Nonetheless, awareness of this epidemic by health professionals and the public is lagging. Total mortality from cardiovascular disease in women nearly equals that in men (approximately 500,000 deaths annually) and is nearly double the female mortality from breast, lung, uterine, cervical, and ovarian cancers combined. Yet women overwhelmingly perceive cancer, particularly breast cancer, and stressrelated conditions as their two major health threats. The myth that coronary heart disease (CHD) is not a health threat for women continues despite more than 15 years of epidemiologic data to the contrary.
Recent interest in women who are at risk or have established heart disease has been accentuated by recognition of existing gaps in our knowledge of the impact of gender on a variety of variables, including the pathophysiology of atherosclerosis, its clinical manifestations, CHD risk factors, efficacy of conventional treatments and interventions, and the role of hormonal replacement therapy on risk factor modification. Currently available data point to several important gender differences in heart disease. A great deal of additional scientific study is needed to elucidate the optimal treatment and prevention of CHD in women. Similarly, equally concerted educational efforts for patients and health care providers will be needed to permit successful risk factor intervention and treatment implementation.
A variety of controversies exist. Is there gender bias in the current
BACKGROUND
In 1987 and 1992, the National Heart, Lung, and Blood Institute of the National Institutes of Health (NIH) convened task force conferences on cardiovascular health and disease in women. More recently, while under the directorship of Bernadine Healy, the NIH established a national Office of Research on Women's Health. These events have focused the national spotlight onto women's health issues. The task the nation has been charged with on the recommendation of the proceedings 1 from these national agencies is ambitious indeed: to direct health care resources toward improving all aspects of women's health and cardiovascular health to include clinical services, education, and research. This mandate will do much to help dispel the myths and address the controversies that have surrounded women's health issues and contributed to relative past inaction.
Although a number of health problems are unique to women or affect them disproportionately (e.g., pregnancy, breast and uterine cancer, and osteoporosis) this chapter focuses on cardiovascular disease in women and, in particular, CHD because of its overwhelming, though underrecognized, importance to the health of American women. Within this context, a number of significant myths and controversies have been identified and are highlighted here.
Myths surrounding the available medical and epidemiologic knowledge and its application are as follows:
- Coronary heart disease is a disease that affects primarily men, whereas breast cancer is the major health threat for women.
- Women appear to be at less risk for CHD than their male counterparts.
- Changing hormonal status and menopause confound our understanding of the impact of heart disease in women.
- No gender differences exist in therapeutic treatment approaches and applications for men and women with CHD.
Controversies in heart disease in women relate to the following:
- Perceptions of heart disease risk and cardiovascular disease outcomes by both patients and health care providers
- Differences in, and the role of, psychosocial perspectives and attitudes in clinical decision making
- Controversies in management decisions and treatment applications amid a gender gap in medical research
By understanding which factors are critical in the epidemiology, pathogenesis, treatment, and outcome for women with CHD, health care consumers, providers, educators, and policy makers can collectively become more informed partners and make a significant impact in a disease process that still remains largely undertreated and underdiagnosed in women.
MYTHS
Myth #1: Coronary Heart Disease Is a Disease
That Affects Primarily Men
Coronary Heart Disease Coronary heart disease constitutes a major public health concern and has a substantial impact on utilization of U.S. health care resources (see Table 23.1). Coronary heart disease continues to be the leading cause of death for men and women in the United States. Age-adjusted death rates in the United States for men and women with cardiovascular disease (i.e., CHD and stroke) are similar and far outnumber deaths from all the other major causes (see Figure 23.1). In addition, cardiovascular disease deaths are more than double the combined total number of deaths from other major causes of mortality in women (including maternal mortality and uterine, ovarian, cervical, breast, and lung cancers). As demonstrated in Table 23.2, CHD is the leading cause of death for women over the age of 65 and the second-leading cause of death for perimenopausal women. This is in contradistinction to the pattern seen for men, where heart disease is the leading cause of death from middle age on. Therefore, CHD is significantly more age dependent in
| Women | Men | |
|---|---|---|
| SOURCE: Wenger et al., eds., Cardiovascular Health and Disease in Women. Greenwich, Conn: LeJacq Communications, 1987. | ||
| Population | 125 million | 118 million |
| Deaths | 244,000 | 268,000 |
| Hospitalizations | 0.9 million | 1.3 million |
| Physician office visits | 4.4 million | 5.8 million |
| Prevalence | 3.0 million | 4.2 million |
| Health expenditures | $6 billion | $9 billion |
| Age | |||
|---|---|---|---|
| 25–44 | 45–64 | 65+ | |
| SOURCE: National Center for Health Statistics. | |||
| Women | |||
| 1 | Cancer | Cancer | Heart disease |
| 2 | Accidents | Heart disease | Cancer |
| 3 | Heart disease | Stroke | Stroke |
| Men | |||
| 1 | Accidents | Heart disease | Heart disease |
| 2 | HIV infection | Cancer | Cancer |
| 3 | Heart disease | Accidents | Stroke |
Myocardial Infarction Epidemiologic data for myocardial infarction (MI) show striking gender-related differences. Perhaps the most extensive data available come from 26 years of observation in the Framingham Heart Study.2 For example, the mean age at presentation of MI was greater for women than for men (see Figure 23.2). Interestingly, of the three major presentations of CHD (sudden death, MI, and angina), the first two are significantly more common in men, whereas angina was
Figure 23.1. Leading causes of death in men and women in the United States (in thousands), 1987. Abbreviations: CV, cardiovascular; COPD, chronic obstructive pulmonary disease; AIDS, acquired immune deficiency syndrome.
Figure 23.2. Heart attacks in the United States (in thousands). Adapted from American Heart Association, based on the Framingham Heart Study.
Figure 23.3. Number of deaths by cause and age in U.S. women (all races), 1988. Source: National Center for Health Statistics, Vital Statistics of the United States, Vol. II, Mortality, Part A (Washington, D.C.: U.S. Public Health Service, 1991).
Postinfarction outcomes have been investigated by a number of studies 3–5 and demonstrate higher initial and long-term mortality for women as opposed to men, higher complication rates, and higher reinfarction rates. The role of ethnicity in mortality outcome from MI was highlighted by data from the Multicentre International Survival and Limitation of Infarct Size (MILIS) Trial,6 which demonstrated that whereas combined mortality 48 months postinfarction was higher for women than for men (36% vs. 21%), African-American women had the highest postinfarction mortality, 48%. The reasons for the differences observed in the MILIS trial are incompletely understood but may relate to ethnic differences associated with cardiac risk factor prevalence, socioeconomic factors, and genetic predisposition.
Stroke In part because of the rapid decline in stroke rates in the United States in the last 40 years,7–9 cerebrovascular accident (CVA) in women has received less attention than CHD. Yet CVA is an important entity in cardiovascular disease in women and, like MI, demonstrates significant gender and ethnic differences.10 In general, stroke rates are uniformly higher among African-American men and women than they are for Caucasian men and women. Although deaths from CVA in men outnumber those for women by 30%,9 women are more likely to have fatal strokes than men.7,10 Furthermore, stroke mortality among African-American women is nearly two times that of Caucasian women until age 85, at which point the ethnic and gender trends for stroke are reversed, with Caucasian women having the highest mortality.11 Gender differences in the association between stroke and blood pressure, the strongest and most consistent risk factor for CVA, have not been reported. Like for CHD, the economic and social impact of CVA is immense. The highest percentage of nursing home admissions in the elderly (age 65) are due to disability from stroke; women comprise 76% of this group.12 In addition, current epidemiologic studies appear to indicate a trend toward reversal of the decline in CVA morbidity and mortality observed in prior years, with stroke incidence rates rising in the past 10 to 15 years, particularly in older women.13
Myth #2: Women Appear to Be at Less Risk
for CHD Than Their Male Counterparts
In order to gain a better understanding of the factors responsible for gender differences in cardiovascular disease as discussed previously, gender
| NOTE: LDL, low-density lipoprotein; HDL, high-density lipoprotein. | SOURCE: C. T. Sempos et al., Prevalence of high blood cholesterol among US adults: An update based on guidelines from the second report of the National Cholesterol Education Program Adult Treatment Panel, Journal of the American Medical Association 269, no. 23(1993), 3009–3014. Division of Health Examination Statistics, Centers for Disease Control and Prevention, Hyattsville, Maryland. |
| Positive risk factors for CHD other than LDL cholesterol | |
| Age: males≥45 years, females≥55 years or premature menopause without estrogen therapy | |
| Family history of premature CHD (≤55 years in male parent or sibling or ≤65 years in female parent or sibling) | |
| Current cigarette smoking | |
| Hypertension | |
| Low HDL cholesterol (≤35 mg/dl) | |
| Diabetes mellitus | |
| Negative risk factor for CHD | |
| High HDL cholesterol (≥60 mg/dl) |
Age As the epidemiologic data on MI and CVA indicates, risk for cardiovascular disease in women is very importantly affected by aging. There is a 10-year lag between men and women in age as a risk factor for CHD (age> 45 for men, age> 55 for women) and in family history of premature CHD as a risk factor for CHD (male relative with CHD prior to age 55, female relative with CHD prior to age 65). The more advanced age of women at the time of CHD diagnosis coincides with a greater prevalence of other age-dependent risk factors, such as hypertension, diabetes, and hyperlipidemia. In addition, age contributes significantly to the higher complication rate, increased functional disability, and greater sense of social isolation that confronts women with CHD.16 Social isolation (i.e., the absence of a spouse, significant other, or meaningful social contacts), an independent variable, has been identified to be the most important prognostic socioeconomic factor in patients with CHD.17 The impact of social isolation becomes increasingly important in light of recognition that the average life span of U.S. women continues to exceed that of men, such that greater than 50% of women over the age of 65 are widowed.
Diabetes Mellitus A second important risk factor for CHD in women is diabetes mellitus (DM). Women with DM have a substantially higher relative risk of CHD and higher total CHD and congestive heart failure mortality as compared with diabetic men,18,19 even after adjusting for other associated cardiovascular risk factors. The prevalence of DM is greater in African-American men and women than in Caucasian men and women. In women, the prevalence of DM is slightly lower than it is in men prior to age 65 but thereafter exceeds the prevalence in men.20 The inter-relationships between cardiovascular risk and DM are complex, such that the reasons for the increased risk conferred by DM in women are not entirely understood. Risk appears to be related to a variety of factors associated with DM, including obesity, hyperinsulinemia, and peripheral insulin resistance;21 hyperestrogenemia;22 and hyperlipidemia with resultant lipid profile abnormalities that are particularly unfavorable and atherogenic for women (i.e., small dense low-density lipoprotein [LDL], hypertriglyceridemia, and low levels of high-density lipoprotein [HDL] cholesterol).23
Hypertension Hypertension is an important risk factor for stroke and cardiovascular disease. Figure 23.4 A and B demonstrates changes in mean systolic and diastolic blood pressures as a function of age in African-American and Caucasian men and women.24 As can be observed from the figures, mean systolic blood pressure rises with age in African-American and Caucasian men and women. After age 54, mean systolic blood pressures are higher in women than in men.25–28 In contrast, mean diastolic blood pressures also increase with age but decrease slightly at the older age-groups. At all ages, mean diastolic blood pressure levels are higher in men than in women. Although hypertension is a significant risk factor for excess mortality in both genders, hypertension appears to confer greater relative risk for women as compared to men. Specifically, systolic hypertension appears to be a more important predictor of mortality in both African-American and Caucasian women, whereas diastolic hypertension appears to have a much greater impact on mortality in African-American women.29 Furthermore, hypertension has been demonstrated to be second only to age as the most important predictor of CHD in women.15 As compared to endogenous hypertension, hypertension associated with oral contraceptive use, or with pregnancy, has not been demonstrated to be associated with an increased risk for CHD or an increased risk of developing hypertension later in life.
Figure 23.4 (A) Systolic blood pressure (SBP) by age, gender, and ethnicity. Adapted from Pyörälä et al. (1987 [23]). Abbreviations: WM, White male; WF, White female; BM, Black male; BF, Black female. (B) Diastolic blood pressure (DBP) by age, gender, and ethnicity. Adapted from Rowland and Roberts (1982 [24]). Abbreviations: WM, White male; WF, White female; BM, Black male; BF, Black female.
Figure 23.5. Age trends in lipoprotein-cholesterol fractions. Adapted from Kannel (1988 [33]). Abbreviations: LDL, low-density lipoprotein; HDL, high-density lipoprotein.
Hyperlipidemia Previous epidemiologic data have demonstrated a nonlinear relationship between serum cholesterol and cardiovascular risk: a 2% increase in cardiovascular risk for every 1% increase in serum total cholesterol above 200 mg/dl.30 The components of total cholesterol are subfractionated on the basis of density ultracentrifugation and confer differing degrees of cardiovascular risk. In men and women, LDL is directly correlated with risk, whereas HDL inversely correlates with 31,32 In addition, lipid levels change in men and women as a function of age. In premenopausal women, serum total and LDL cholesterol levels are generally lower than in men. Levels of HDL cholesterol are uniformly higher in women than in men at all ages. However, following menopause, and beginning in the premenopausal years, LDL cholesterol levels in women rise to higher levels than do men's (see Figure 23.5).33 Levels of HDL in women fall slightly in postmenopause. Low HDL levels (40–45 mg/dl) in women appear to confer greater increased risk
In general, hypertriglyceridemia and elevations in very low density lipoprotein (VLDL) cholesterol have not been clearly demonstrated to be associated with equivalent relative cardiovascular risk in men and 36–38 Elevations of VLDL triglycerides confer greater relative risk in women as compared to men.39 The reasons for these differences are not presently clear but may in part relate to resultant interactions with other parameters associated with hypertriglyceridemia, including low HDL cholesterol, obesity, and low levels of exercise. In addition, hypertriglyceridemia in women may be less amenable to modification. For example, aerobic exercise training has been demonstrated to affect blood lipids differently and less favorably in women compared to men.40
Myth #3: Changing Hormonal Status
and Menopause Confound Our Understanding
of the Impact of Heart Disease in Women
Menopause An important physical and emotional transition in the lives of women is menopause, which is associated with a dramatic alteration in the vascular hormonal milieu, including a fall in estrogen levels. The sheer number of CHD risk parameters that are affected when a woman attains menopause, or age greater than 55 (the age by which most women are postmenopausal), strongly implies a role for menopause as an independent risk factor for CHD.41 Menopause, whether natural or surgical, is associated with a two- to fourfold increase in CHD risk 41,42 (see Figure 23.6). A proportionately greater risk increase is seen the younger a woman is at the time of menopause.43,44 As current life expectancy for women is greater than 80 years, many women will spend
Figure 23.6. Annual incidence of cardiovascular disease per 1,000 women (by menopause status). Adapted from Department of Health, Education, and Welfare Publication 74, 1974, Framingham Study.
It is of interest that hysterectomy, perhaps the most frequently performed surgery on women, has also been postulated to be associated with an increase in CHD risk. The mechanism of risk enhancement may be associated with loss of uterine prostacyclin, a potent vascular vasodilator and inhibitor of platelet aggregation.44 Keen interest also currently exists in evaluating the perimenopausal period, a period characterized by a changing hormonal status, as a time of accelerating CHD risk in women.
Myth #4: No Gender Differences Exist in Therapeutic
Treatment Approaches and Their Applications
for Men and Women with CHD
The health care costs associated with treatment for CHD are staggering 45 and highlight the need for judicious utilization of currently available management options. Yet there is little information regarding the benefits and efficacy of treatment and management options for women with CHD. The lack of information stems partly from past exclusion of women in clinical studies due to fear of pregnancy during an investigative trial and from concerns that fluctuations in hormone status in women would be a confounding variable in data interpretation. As a result, much of the available information on cardiovascular therapeutic interventions comes from studies done primarily in men. The relevance and appropriateness of applying the results of studies in men to women has been questioned. Currently, conventional medical and surgical treatment for women with CHD is not associated with similar benefits as for men. Women with CHD are underdiagnosed and undertreated when compared to male counterparts, resulting in delay in diagnosis and possible adverse outcomes. This section evaluates gender differences in the management of CHD.
Diagnostic Studies Chest pain, the most common presenting symptom of CHD in women, is often dismissed as a symptom of CHD. This stems in part from lack of physician awareness of women's risks for CHD, such as premenopausal women with a significant number of additional risk factors,46,47 and discomfort with limitations of diagnostic modalities in women. Other factors contributing to the underdiagnosis of CHD in women include women's misperceptions of CHD as a health threat and the consequent dismissal, denial, or minimizing of symptoms; a higher frequency of noncardiac conditions associated with chest pain syndromes in women (e.g., mitral valve prolapse and anxiety disorders); a lower prevalence of CHD in women when compared to men of similar age; and exaggerated concerns of limitations of diagnostic testing in women. Although exercise treadmill testing is associated with a higher false-positive rate in women 47,48 and the interpretation of nuclear medicine scans can be hampered by breast artifact and breast attenuation,48 both of these diagnostic studies remain useful in the evaluation of chest pain and ischemia in women.
Invasive Procedures and Revascularization Gender differences have been reported in utilization rates of invasive cardiovascular procedures for men and women, with women undergoing significantly fewer invasive procedures.49 Specifically, women are referred for coronary arteriography, coronary angioplasty, and coronary artery bypass surgery at nearly half the rate as men,50–53 even after the diagnosis of CHD has been established. The differences observed have been attributed to a variety of factors, including possible referral bias, inadequate access to care, more advanced age and overall poorer health status of elderly women, and anatomic considerations. Support for these postulates is provided by data from the Coronary Artery Surgery Study (CASS),54 which indicated that women who undergo bypass surgery are typically sicker, more often require emergency surgery, and are referred for revascularization at a later and more symptomatic stage of their illness than men. In addition, the CASS study demonstrated that women undergoing bypass grafting had mortality rates two times greater than those for men, less initial and later symptomatic relief from angina, and shorter long-term graft patency rates. Therefore, bypass surgery may carry greater risks and be less efficacious in women as compared to men. Similarly, women have excess mortality after percutaneous transluminal coronary angioplasty.55 Therefore, women may experience greater risks than men do with reperfusion and revascularization. The reasons for these differences are unclear but may in part relate to some of the factors mentioned previously and to anatomic variables, including smaller caliber coronary vessels and greater vessel friability as a direct result of hormonal vascular effects.
Medical Treatment Gender differences in response to pharmacologic management of CHD may be anticipated because of differences in body size, fat distribution, protein binding, and drug-drug interactions. The Nurses's Health Initiative Study 56 is the largest trial to date to include an investigation of the benefits of aspirin in women. This study found that aspirin use by women led to a 37% reduction in cardiovascular risk. The risk benefit was of similar magnitude to that previously established for men by the British Doctor's Study and other studies in men. Unfortunately, little comparable data are available regarding benefits to women who have been prescribed calcium channel blockers or beta blockers, other than the well-established benefits of beta blockers post-MI. Angiotensin converting enzyme inhibitors, used extensively for management
| Study | Subjects | Outcome |
|---|---|---|
aFrom Journal of the American Medical Association 242(23), 2572–2577. | ||
bFrom The Lancet 1 (1818): 1261–1267. | ||
cFrom British medical Journal 291(6488), 97–104. | ||
dFrom The Lancet 1 (8442): 1349–1354. | ||
| Hypertension Detection and Follow-Up Program (1979)[a] | 10,940 (46% female) | Female (Black)—28% reduction in mortality |
| Male (Black)—19% reduction in mortality | ||
| Male (White)—15% reduction in mortality | ||
| Female (White)—3% reduction in mortality | ||
| Australian Therapeutic Trial (1980)[b] | 3,427 (37% female) | Male—26% reduction total end points p<.05 |
| Female—26% reduction in end points p = not significant | ||
| Medical Research Council Trial of Treatment of Mild Hypertension (1985)[c] | 17,534 (48% female) | Female—26% INCREASE in all cause mortality |
| Male—15% decrease in all cause mortality | ||
| European Working Party on High Blood Pressure in the Elderly(1985)[d] | 840 (70% female) | Female—18% decrease in cardiovascular mortality |
| Male—47% decrease in cardiovascular mortality | ||
Hormone Use, Hormone Replacement Therapy, and CHD Risk Past use of oral contraceptives has not been linked to increased risk of cardiovascular disease,57–59 with the well-recognized exception of enhanced thrombotic potential in women who are smokers, over the age of 35, and on oral contraceptives.60 In addition, most epidemiologic studies of
| Study | Subjects | Outcome |
|---|---|---|
| NOTE: SK, streptokinase; ASA, aspirin; TPA, tissue plasminogen activator. European, European Trial (American Journal of Cardiology 63[17], 1185–1192, 1989); GISSI, Gruppo Italiano per lo Studio della Streptochinasi nell Infarto Miocardico (The Lancet 2[8564], 871–874, 1987); ISIS II, Second International Study of Infarct Survival (The Lancet 2[8607], 349–360, 1988); ASSET, Anglo-Scandinavian Study of Early Thrombolysis (The Lancet 2[8610], 525–530, 1988); MILIS, Multi-Centre Investigation of the Limitation of Infarct Size (Journal of the American College of Cardiology 9[3], 473–482, 1987). | ||
| European Trial (SK, heparin) | 730 (133 females) | Males—30% reduction mortality |
| Females—24% eduction mortality | ||
| GISSI (SK) | 11,806 (1,157 females) | Males—8.8% mortality |
| Females—18.5% mortality | ||
| ISIS II (SK, ASA) | 17,000 (4,000 females) | Males—44% reduction mortality |
| Females—30% reduction mortality | ||
| ASSET (TPA, heparin) | 5,000 (1,151 females) | Males—28% reduction mortality |
| Females—21% reduction mortality | ||
| MILIS (hyaluronidase and propanolol) | 816 (226 females) | Males—21% cumulative mortality |
| Females—36% cumulative mortality | ||
Figure 23.7. Effects of estrogen on lipid parameters. Source: Adapted from Paganini-Hill et al. (1988 [69]). Abbreviations: TC, total cholesterol; LDL, low-density lipoprotein; VLDL, very low density lipoprotein; HDL, high-density lipoprotein.
The mechanisms by which estrogen affords cardioprotection are multifactorial. In addition to benefits from chronic use, estrogen has been demonstrated to have acute effects on the vasculature.70 Estrogen acts at several steps in the atherogenic process to prevent cardiovascular disease. Some of the benefits of estrogen (approximately one-fourth to onehalf of the CHD risk reduction) are ascribed to its ability to favorably alter the lipoprotein profile (see Figure 23.7).71 Oral conjugated estrogens are associated with the greatest benefit on the lipid profile, resulting in approximately 15% reductions in LDL cholesterol (from accelerated LDL catabolism) and a similar rise in HDL cholesterol levels.71 Lipid benefits of lesser magnitude have been reported with the use of other formulations and delivery routes. Estrogen replacement is associated with a significant, though highly variable, rise in VLDL triglyceride levels 72 (resulting from increased production of large, triglyceride-rich VLDL).71 The significance of hypertriglyceridemia as a consequence of HRT on CHD risk is unclear when compared to that of endogenous hypertrygliceridemia.
Despite the currently known benefits of HRT, estimates of noncompliance range from 15% to 41%.75 The figures are particularly significant given the extent of cardiovascular risk and mortality reductions afforded by HRT, as demonstrated by studies to date. Elderly women, the highest-risk group for CHD, may face conflicts relating to the perception that CHD is a natural consequence of aging. Compliance is also affected by uncertainty regarding the risks of HRT.
The major well-established deleterious effect of unopposed estrogen therapy in women with a uterus is a three- to fourfold increase in the risk of endometrial cancer.72,76,77 The rationale for combination therapy with estrogen and progestins in women with a uterus is that the addition of progestin protects the endometrium from prolonged stimulation with unopposed estrogen, thereby reducing the risk of endometrial cancer. In general, progestins alone attenuate the lipid effects of estrogen. However, as clearly demonstrated by the recent Postmenopausal Estrogen and Progesterone Intervention (PEPI) Trial,72 if progestins are given in combination with estrogen, favorable effects on lipid parameters continue to be evident. Whether progestins attenuate the cardioprotective effects of estrogens is unclear at this time, as the effects on CHD risk and mortality resulting from combined estrogen and progesterone HRT have not been conclusively evaluated by studies to date. Data on the potential increase in risk for breast cancer from HRT remain inconclusive and will have to await clarification from future studies.78–82
Cardioprotective effects of estrogen cannot be explained solely on the basis of lipid changes, however. Recent studies indicate that a number of additional mechanisms are of significance. It appears that a substantial portion of the cardioprotective effects of estrogen may be mediated by direct effects on the vessel wall, leading to an attenuation of aortic cholesterol accumulation.83–85 Estrogens have also been demonstrated to prevent oxidative modification of LDL cholesterol.86 Other beneficial effects of estrogen include direct actions in decreased expression of adhesion molecules involved in monocyte adhesion to endothelium and in altering vasoreactivity of atherosclerotic vessels and thereby promoting vasodilation.87 Furthermore, reductions in fibrinogen levels have also been reported with HRT in postmenopausal women (PEPI trial). Despite mounting evidence on the benefits of HRT, relatively few physicians prescribe hormonal therapy to their patients with CHD or lipid abnormalities, and many women are reluctant to accept such therapy.
CONTROVERSIES
The relatively recent and rapid explosion of interest in cardiovascular disease in women has brought to the forefront the available epidemiological, clinical, and basic science information from studies on the topic to date. Simultaneously, there is heightened awareness of the inadequacies and lack of completeness of available data. This has in turn led to both excitement and a general sense of discomfort with this emerging medical discipline. Furthermore, when placed in the context of existing psychosocial structures, attitudes, and the impact of health care reform, controversies in the field are sure to emerge. This section focuses on a discussion of current controversies from three perspectives relating to women's misperceptions about cardiovascular risks; the impact of physician attitudes, behaviors, and psychosocial perspectives; and the gender gap in medical research.
Patient Perspectives
Opinion polls88 indicate that women of all ages overwhelmingly (76%) identify cancer, particularly breast cancer, as their most serious health threat. Heart disease is very infrequently, if ever, cited as a significant health problem by women, who mistakenly believe that only men are affected. Because of this lack of awareness, women often minimize or misinterpret symptoms of heart disease, even if they have a known diagnosis of CHD. To the extent that risk-related behaviors are influenced by the perceived benefits or perceived consequences of those behaviors, women, and particularly younger women, are not focused on the prevention of CHD but rather approach their lives with the misbelief that CHD is a remote health concern that will not require attention until a very advanced age. For example, young women are more likely to initiate smoking and less likely to stop smoking than young men, despite men and women being equally aware of the health threats of smoking.89 Therefore, the
aA. Assaf and R. A. Carleton, The Women's Health Initiative Clinical Trial and Observational Study: History and Overview, R I Med 77, no. 12(1994), 424–427. Pawtucket Heart Health Program, Brown University, Providence, Rhode Island. |
bH. G. Schrott et al., Adherence to National Cholesterol Education Program Treatment goals in postmenopausal women with heart disease: The Heart and Estrogen/Progestin Replacement Study (HERS),Journal of the American Medical Association 277, no. 16(1997), 1281–1286. Department of Preventive Medicine, University of Iowa, Iowa City. |
cThe Writing Group for the PEPI Trial, Effects of estrogen or estrogen/progestin regimens on heart disease risk factors in postmenopausal women: The postmenopausal Estrogen/Progestin Interventions (PEPI) Trial, Journal of the American Medical Association 273, no. 3(1995), 199–208. |
dD. Bowen et al., The Women's Health Trial Feasibility Study in Minority Populations: Design and baseline descriptions, Annals of Epidemiology 6, no. 6(1996), 507–519. Emory School of Medicine, Atlanta, Georgia. |
eC. E. Davis et al., Natural menopause and cardiovascular disease risk factors: The Poland and US Collaborative Study on Cardiovascular Disease Epidemiology, Annals of Epidemiology 4, no. 6(1994), 445–448. School of Public Health, Department of Biostatistics, University of North Carolina, Chapel Hill. |
fA. B. Grey et al., The effect of the anti-estrogen tamoxifen on cardiovascular risk factors in normal postmenopausal women, Journal of Clinical Endocrinology and Metabolism 80, no. 11(1995), 3191–3195. Department of Medicine, University of Auckland, New Zealand. |
gR. J. Levine et al., Trial of Calcium for Preeclampsia Prevention (CPEP): Rationale, design, and methods, Controlled Clinical Trials 17, no. 5(1996), 442–469. National Institute of Child Health and Human Development, Division of Epidemiology, Statistics, and Prevention Research, Bethesda, Maryland. |
hJ. E. Manson et al., A secondary prevention trial of antioxidant vitamins and cardiovascular disease in women: Rationale, design, and methods, Annals of Epidemiology 5, no. 4(1995), 261–269. Department of Medicine, Harvard Medical School, Boston, Massachusetts. |
iD. Bearden et al., Age, race, and gender variation in the utilization of coronary artery bypass surgery and angioplasty in SHEP, Journal of the American Geriatrics Society 42, no. 11(1994), 1143–1149. Division of Geriatrics, University of Alabama at Birmingham. |
jM. A. Espeland et al., Reliability of longitudinal ultrasonographic measurements of carotid intimalmedial thicknesses, Stroke 27. no. 3(1996), 480–485. Department of Public Health Sciences, Bowman Gray School of Medicine, Wake Forest University, Winston-Salem, North Carolina. |
kR. H. Schneider et al., A randomised controlled trial of stress reduction for hypertension in older African Americans, Hypertension 26, no. 5(1995), 820–827. Department of Physiological and Biological Sciences, Maharishi University of Management, Fairfield, Iowa. |
lL. J. Appel et al., Trial of Nonpharmacologic Intervention in the Elderly (TONE): Design and rationale of a blood pressure control trial, Annals of Epidemiology 5, no. 2(1995), 119–129. Welch Center for Prevention, Epidemiology and Clincal Research, Johns Hopkins Health Institutions, Baltimore, Maryland. |
| The Women's Health Initiative (WHI) Clinical Trial—(Assaf and Carleton, 1994)[a] |
| The Heart and Estrogen Progesterone Replacement Study (HERS)—(Schrott et al., 1997)[b] |
| Postmenopausal Estrogen/Progestin Intervention Trial (PEPI—JAMA, 1996)[c] |
| Women's Health Trial Minority Feasibility Study—(Bowen et al., 1996)[d] |
| Cardiovascular Risk Factors and The Menopause—(Davis et al., 1994)[e] |
| Tamoxifen in Postmenopausal Women Trial: Cardiovascular Risk and Events— (Grey et al., 1995)[f] |
| Calciuim for Preeclampsia Prevention (CPEP) Trial—(Levine et al., 1996)[g] |
| The Women's Antioxidant and Cardiovascular Study (WACS)—(Manson et al., 1995)[h] |
| Systolic Hypertension in the Elderly Program (SHEP)—(Bearden et al., 1994)[i] |
| Asymptomatic Carotid Artery Plaque Study—(Espeland et al., 1996)[j] |
| Stress Reduction in Elderly Blacks with Hypertension—(Schneider et al., 1995)[k] |
| Trial of Nonpharmacologic Intervention in the Elderly (TONE)—(Appel et al., 1995)[l] |
Women's perceptions about their vulnerability to cardiovascular disease influence their approach to risk behaviors and to symptom recognition and labeling. Given that the recognition of symptoms of a disease is influenced by beliefs about their significance, it is not surprising that women delay reporting symptoms of CHD, minimize symptoms, and are more likely to attribute symptoms to noncardiac etiologies. For example, women with acute MI have been shown to have longer prehospital presentation delays than men.92 This is particularly significant given the critical nature of the timing of thrombolysis administration in acute MI.
Coronary heart disease risk is also influenced by psychosocial factors, including socioeconomic and occupational status. A marked gradient in death rates from heart disease has been reported for women as a function of years of education completed.93 In addition, with increasingly greater numbers of women entering the workforce (80% of women ages 20–64 are in the labor force), concerns about competing priorities and increasing demands on women become important. Interestingly, according to several health indicators, working women appear to be healthier overall than nonworking women.94 However, as has been demonstrated in men, women who experience depression, repressed hostility, and anger have significantly increased risk of CHD 95—these conditions can be more prevalent in female-dominated occupations characterized by low control and high demand.
Physician Attitudes and Perspectives
Gender differences in the diagnostic and treatment approach of physicians toward women with CHD have been well documented. In general, physicians are significantly less aggressive in the diagnostic evaluation and follow-up of women with suspected CHD. Sixty-two percent of women with a positive exercise treadmill test had no further diagnostic workup as compared to 38% of men.96 In addition, only 4% of women with abnormal nuclear scans (vs. 40% of men) were referred for diagnostic cardiac catheterization.97 The differences have been attributed
There appear to be no gender differences in the physiologic perception of angina. Nonetheless, important differences exist in the etiology of angina in men and women. Although angina is more common in women than in men, it is also more commonly associated with normal coronary arteries,54 microvascular angina,100 and other noncoronary causes of chest pain, such as mitral valve prolapse.101 This is in contradistinction to angina in men, which more commonly is associated with coronary artery disease. In addition, chest pain syndromes in women are more likely to be attributed to noncardiac (and possibly psychogenic) etiologies by physicians, as related diagnoses (e.g., depression and panic attacks) are more common in women.102 These circumstances in turn may lead physicians to less aggressively pursue the evaluation of complaints of chest pain by women. Women's interpretation of physician behavior may in turn lead to a belief that anginal symptoms are unimportant or not serious and result in less diligence in symptom reporting.
Physicians may also be less inclined to recommend higher-risk invasive procedures to their female patients with CHD, as these patients tend to be older and sicker and have poorer procedure-related outcomes than male counterparts, as discussed earlier. In addition, a less invasive approach to evaluating patients with suspected CHD may be a consequence of the relative paucity of research data for women as a consequence of the fewer studies that have been done on women as research subjects. The larger body of knowledge on cardiovascular disease in men may serve to further reinforce the belief that it is a disease affecting primarily men.
Gender Gap in Biomedical Research
Until recently, women have been largely excluded as subjects in many cardiovascular research studies. This has resulted in inadequate information in nearly every aspect of the field and a poor understanding of the best approaches to the prevention and treatment of cardiovascular disease in women. It is largely this gender gap in research that has resulted in promoting many of the myths that have been discussed and that has led to controversies in the field. Furthermore, as a significant proportion of the elderly population in the United States is comprised of women, the
Finally, studies on women of ethnicity are sorely lacking in the field, resulting in a near information void in this subgroup of women. In general, cardiovascular disease risk among Latino women and Asian women is low, partly because of their lower rates of hypertension and lower levels of smoking. However, the higher incidence of diabetes mellitus in Latino women is not consistent with their heart disease advantage. Evaluation of gender-ethnicity interactions in the San Antonio Heart Study 103 clearly demonstrated a lower cardiovascular mortality in Mexican-American men than in non-Hispanic Caucasian men. In contrast, no ethnic differences in mortality were observed in Mexican-American women. The reasons for the gender-ethnicity differences in mortality are not well understood but may relate to lifestyle or cultural differences in disease perception. These factors may be very important in modifying cardiovascular risk and outcomes and are examples of critical information that can be derived by having a better understanding of the role of sociocultural factors on cardiovascular disease and including women of diverse ethnic backgrounds in ongoing and future research trials.
CONCLUSION AND FUTURE DIRECTIONS
Heart disease, the leading killer of American women, is underrecognized and frequently underdiagnosed. In addition, women have greater morbidity and higher mortality from heart disease than men. Furthermore, significant differences exist in the presentation, diagnosis, and treatment of CHD in men and women. It is therefore necessary to (1) identify approaches for promoting appropriate clinical services for women at risk for and with established cardiovascular disease, (2) develop educational programs for the public and health care providers, (3) focus research efforts on cardiovascular disease in women, and (4) guide public health care policy to address women's cardiovascular health issues.
The following section outlines a series of recommendations for action in each of these four areas.
Clinical Care
- Establish women's health or cardiovascular health clinics, programs, and/or centers in communities and academic institutions.
- Recruit more health care providers with an interest in women's health and create linkages among providers with knowledge and expertise in women's cardiovascular health.
- Educate physicians to recognize, aggressively pursue, and adequately manage chest pain or other potentially CHD-related symptoms and signs in women.
- Emphasize multidisciplinary and multicultural approaches to health care delivery in women's health, including cardiovascular health.
Education
- Educate physicians and health care providers on women's health issues and cardiovascular disease in women by sponsoring continuing medical education programs, specialty publications, case-based learning, telemedicine conferences, didactic teaching session, grand rounds presentations, women's health conferences, and so on.
- Develop and enrich women's health curricula for medical graduates and undergraduates in cardiovascular disease and integrate existing fragmented curricula. Pursue curricular approaches that strive for vertical integration through medical education and horizontal integration across disciplines.
- Increase public health education efforts to raise awareness of cardiovascular disease in women.
- Create linkages with and among existing educational venues, such as the National Office of Women's Health, the American Heart Association (AHA), the American Medical Association, the American Medical Women's Association (AMWA), and state health departments. Ongoing educational and awareness campaigns include AMWA's “Advanced Curriculum on Women's Health” and AHA's public education pamphlet “Heart Disease in Women: The Silent Epidemic.”
- Raise awareness of cardiovascular disease in women by innovative public education campaigns at local or regional levels by creating partnerships with the media, holding public education forums and cardiovascular health fairs for women, and so on.
Research
- Enhance inclusion and participation of women (including elderly women and women of ethnicity) as subjects in cardiovascular research trials and studies.
- Fund and foster research that has as its focus cardiovascular disease in women and other understudied areas.
- Identify and support national agencies with women's health agendas, such as the U.S. Public Health Service Office of Research on Women's Health, Women's Health Collaboratives, the American Association of Medical Colleges, and others.
- Develop academic research consortiums that foster and support gender-specific research and research by women academicians.
- Establish a national registry of clinical trials that include women or include gender-specific analyses.
- Focus research efforts on cardiovascular disease in women and related topics and fields, including studies on gender differences in disease epidemiology, pharmacotherapy, risk factor stratification, pathogenic mechanisms, biobehavioral and psychosocial variables, and outcomes.
Public Policy
- Encourage women to become more active participants in formulating public health care policy.
- Establish an Office of Women's Health within state health departments.
- Support funding and legislative initiatives that address women's health issues.
- Initiate aggressive public health campaigns and programs aimed at preventing cardiovascular disease and modifying cardiac risk factors to include early detection and treatment of hypertension, smoking cessation, exercise, and control of dietary fat and cholesterol.
By working together and focusing attention on cardiovascular health and wellness in women as a common goal, health care consumers, providers, educators, researchers, and policy makers can make a significant impact to improve understanding, prevention, and treatment of cardiovascular disease—the leading killer of American men and women.
NOTE
The author wishes to acknowledge Rhonda McBride for secretarial assistance. This work was supported by an award from the UC/Health Net Wellness Lecture Series.
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24. HIV/AIDS PREVENTION
Successes and Challenges
Craig R. Waldo and
Thomas J. Coates
HIV prevention science is comprised of a variety of disciplines, including psychology, medicine, law, sociology, anthropology, statistics, epidemiology, economics, political science, and communications. Scientists from these disciplines have worked together to provide an impressive convergence of scientific evidence that demonstrates that the HIV epidemic can be controlled. In this chapter, we demonstrate that the failure to contain HIV and AIDS has not been because of a lack of know-how. Rather, we argue that the problem has been primarily in finding ways to apply the knowledge that scientists have accumulated. The application of this knowledge has been thwarted by forces other than scientific ones. Among these are political opposition, the inadequate allocation of resources to prevention, a failure to target interventions to those at risk for HIV, and a failure to address larger social problems that contribute to the transmission of HIV. To support this argument, we first present examples of successful HIV and AIDS prevention and then discuss how and why the clear implications of this research have not been pursued.
DO WE KNOW HOW TO PREVENT HIV AND AIDS?
Worldwide, the total numbers of AIDS cases reported as of June 30, 1997, was 1,644,183, with 576,972 cases in Africa and 797,227 cases in the Americas (World Health Organization, 1997). In the United States, as of June 30, 1997, the cumulative number of AIDS cases reported to
According to the CDC (1997), most (49.4%, or 298,699) of the total reported U.S. adult and adolescent AIDS diagnoses have been among “men who have sex with men” (i.e., men who identify as gay or bisexual or who are homosexually active). The second-largest group has been injection drug users (IDUs), who represent 25.6% (154,664) of all adolescent and adult cases of AIDS. An additional 6.4% of cases are accounted for by men who both have sex with men and inject drugs (38,923 cases). Thus, over 80% of cases are accounted for by men who have sex with men and IDUs. AIDS has also been disproportionately distributed among U.S. racial/ethnic groups: 35.2% (212,394) of adolescent and adult cases have been among African Americans, 17.8% (107,419) have been among Hispanics, and 46.0% (277,672) have been among Whites. Among women, these rates are especially unevenly distributed, with 55.7% of cases represented by African Americans, 20.2% by Hispanics, and 23.1% by Whites.
Despite these alarmingly high incidence and prevalence rates, a large prevention science literature provides evidence that HIV and AIDS can be prevented through behavioral and social changes. Coates (1990) distinguished between two forms of HIV prevention. Primary prevention refers to preventing individuals from becoming infected with HIV, and secondary prevention refers to the prevention of disease progression in those already infected with HIV. Important scientific studies have been conducted for both kinds of prevention, demonstrating the feasibility of behavior change to prevent the spread of HIV and the development of AIDS.
Elsewhere (Coates and Collins, 1998; Waldo and Coates, in press), we have conceptualized HIV prevention at multiple levels of analysis. We have theorized that HIV and AIDS prevention can focus on different social units to promote behavioral changes. In our view, these are the individual, dyadic/small group, organizational, community, and societal/cultural levels of analysis. A comprehensive approach to HIV and AIDS prevention includes interventions at all these levels. To demonstrate how behavior change can occur at each level, we present exemplars of research here. Taken together, these demonstrate that HIV prevention can be successful in multiple ways.
Individual-Level Change
The overwhelming majority of HIV prevention research has occurred at the level of the individual. In their comprehensive review of HIV preventive interventions, Choi and Coates (1994) found that most interventions were individual-level interventions, such as HIV testing and counseling and skills training, or small-group interventions designed to alter individual's knowledge, attitudes, and beliefs. The purpose of such interventions is to motivate individuals and to teach skills to reduce or eliminate HIV risk behaviors, such as anal or vaginal intercourse without condoms or the sharing of syringes during drug use.
A good example of an intervention that targets individuals is Project Respect, a large longitudinal study of heterosexual sexually transmitted disease (STD) clinic patients conducted by the CDC. The intervention incorporated elements of Social Learning Theory, the Theory of Reasoned Action, and the Health Belief Model in a randomized controlled trial of HIV testing and counseling (Kamb et al., 1996). Kamb et al. (1997) reported the results of the intervention with 5,758 HIV-negative heterosexual participants. The study involved three face-to-face intervention conditions: (1) two brief informational educational messages,
(2) HIV prevention counseling with two client-centered sessions based on CDC guidelines, and (3) enhanced counseling with four sessions based on the three theories. All participants were followed up at three and six months with assessments of risk behavior as well as blood tests for STDs. Those in both conditions 2 and 3 were significantly more likely than those in condition 1 to use condoms 100% of the time at three-month followup and significantly less likely than those in condition 1 to have another STD at six-month follow-up.
Another exemplar of individual-level change is found in Peterson et al.
Dyadic/Small-Group Change
An example of an intervention at the dyadic/small-group level is found in Allen et al.'s (1992) study of confidential HIV testing of women in Rwanda. In this study, all women received educational information and were tested for HIV antibodies; the male partners of 26% of these women also received the education and testing with their female partners. The results at one-year follow-up indicated that women whose male partners had received the intervention were twice as likely to use condoms as the women whose partners had not received the intervention. Such results strongly suggest that the efficacy of the intervention was strengthened by engaging both partners in the intervention. HIV/AIDS prevention strategies may, therefore, be especially effective when they capitalize on relationships that are significant for individuals. A similar process exists for small-group interventions that utilize peer and
Organizational Change
Examples of organizations where HIV preventive interventions can occur include schools, bathhouses or sex clubs, injection drug user shooting galleries, workplaces, and prisons. The focus of these interventions is on changing the organizations to which individuals belong, thereby promoting an environment that supports healthy behaviors. Dolan et al. (1995) discussed strategies for reducing HIV incidence among incarcerated drug injectors. Their review highlights the utility of performing interventions at an organizational level. As Dolan et al. point out, correctional facilities have many characteristics that make them likely to increase rates of HIV transmission, including the higher prevalence of both HIV and IDUs as well as situational male homosexuality. In addition, the lack of availability of condoms and clean syringes as well as the presence of boredom heighten the potential for HIV transmission. Brewer and Derrickson (1992) also note that prisons tend to contain more people of color and those from lower socioeconomic strata, groups that are at higher risk for HIV infection. Thus, prisons can be considered organizations that contain high levels of HIV risk. Dolan et al. (1995) discuss possible interventions directed at prisons, including condom distribution, methadone treatment availability, needle exchange, bleach distribution, education, compulsory testing, and segregation of HIV-positive prisoners. Where it has been implemented, Dolan et al. (1995) report that there is some indication that prison-based methadone treatment has been effective in reducing HIV risk behaviors. Nelles and Harding (1996) discuss the fact that since Switzerland has implemented needle exchange programs in its prisons, the rate of needle sharing among injecting prisoners has dropped from approximately half to virtually none. In addition, although 5,335 syringes were exchanged during an experimental period, the rate of injection drug use did not increase during the same period.
An additional example of HIV/AIDS prevention at the organizational level is provided by sex clubs in San Francisco. Before the onset of the
Community-Level Change
Interventions performed at the community level attempt to change social norms in communities to encourage individuals within those communities to reduce their risk behaviors. Kegeles et al. (1996) implemented a community-wide HIV primary prevention program for young gay and bisexual men in a multiple baseline design. The peer-led intervention consisted of community outreach, small groups, community organizing, and a publicity campaign and was successful in reducing the amount of unprotected anal intercourse with both primary and nonprimary sexual partners. The intervention was based largely on empowerment (Rappaport, 1981) and Diffusion of Innovations theories (Rogers, 1983) and involved young gay and bisexual men in important aspects of the intervention implementation. The results of the study showed a decrease in prevalence of reported unprotected anal intercourse from a baseline of 41% to 30% after the intervention, including a decrease from 20.2% to 11.1% with nonprimary sexual partners. In contrast, a comparison community that was randomized to not receive the intervention demonstrated no such change. Given that gay bars are often the most typical gay community settings and that there is an association between substance use and HIV sexual risk taking (Leigh and Stall, 1993), it is important to note that the intervention may have decreased risk taking
The most widely implemented successful community-level intervention is needle exchange programs for IDUs. Watters et al. (1994) surveyed a large sample of IDUs (N 5,644) in San Francisco and found that 61% had obtained syringes from needle exchange sites in the previous year and that 45% had “usually” used the program to obtain syringes. The number of syringes exchanged in the program escalated from 7,821 in the spring of 1989 to 343,883 during the spring of 1992 as the program was implemented more widely in the community. In addition, they found that those who had used the needle exchange program frequently were significantly less likely to report having shared syringes than those who had used the program infrequently or not at all. Thus, this community-level intervention reached a large number of individuals and was related to a reduction in parenteral risk taking. Lurie and Drucker (1997) reviewed the studies to date on needle exchange programs and concluded not only that these programs are highly effective in reducing HIV risk behaviors but also that they do not lead to an increase in drug use, an outcome that many fear these interventions will produce.
Societal/Cultural Level
Interventions at the societal/cultural level change social structures to provide individuals access to resources that enable behavior change. Examples of societal/cultural interventions include local and national policy changes, widespread mass-media campaigns, altering living conditions, social movements, and working to decrease homophobia, racism, sexism, and poverty. Policy changes are often effective and efficient modes of HIV prevention at the societal/cultural level. Perhaps the most significant policy change came when the U.S. blood supply began to be screened for HIV in March 1985. Before that time, many individuals (particularly hemophiliacs) were infected with HIV because of the presence of HIV in the blood supply; currently, however, it is estimated that only 1 in 450,000 to 1 in 660,000 donations per year (18 to 27 total donations) are infectious for HIV but are not detected by currently available screening tests (Centers for Disease Control and Prevention, 1996).
In Thailand, the government enacted a policy of mandatory condom use in brothels in 1990 (The 100% Condom Program). The policy was
An example of a negative impact of policy on HIV prevention can be found in sub-Saharan Africa, which receives only 2.8% of global expenditures for HIV prevention even though this area contains 10% of the world's population and two-thirds of the world's HIV infections; in addition, sub-Saharan African countries spend $0.07 per capita on HIV prevention, whereas the United States spends $2.95 (Lurie et al., 1995). It can be logically argued that this relative lack of spending has contributed to the high prevalence of HIV infection in these countries.
A final illustration the impact of policy occurred in the state of Connecticut in 1992. Although almost all developed countries have made access to sterile syringes legal, the U.S. government continues to maintain a federal ban on their sale over-the-counter or distribution at needle exchanges sites (DesJarlais et al., 1995). In July 1992, however, the Connecticut state laws changed to allow the purchase of nonprescription syringes in pharmacies and for individuals to possess up to 10 such syringes. Since this policy change, surveys indicate that more IDUs reported purchasing syringes at pharmacies (19% before, 78% after) and that fewer reported sharing needles (52% before, 31% after; Groseclose et al., 1995). In addition, a stratified random sample of pharmacies showed that those in neighborhoods with a higher prevalence of IDUs saw a significant increase in nonprescription syringe sales after the policy was implemented, whereas those in other neighborhoods experienced no such change. Results of this study demonstrated that the total number of nonprescription syringes sold per month in the IDUprevalent neighborhoods increased steadily from 460 in July 1992 to 2,482 in June 1993, while sales remained stable at the other pharmacies (Valleroy et al., 1995).
A study by Hogg et al. (1994) demonstrates the influence of societal/cultural variables in HIV/AIDS prevention. They studied the association between socioeconomic status and AIDS mortality, providing implications
WITH ALL THE EVIDENCE SHOWING THAT
HIV AND AIDS CAN BE PREVENTED,
WHY DOES THE EPIDEMIC CONTINUE TO SPREAD?
Political Opposition: Sex-, Homo-, and Junky-Phobias
Political opposition is perhaps the most outstanding reason why successful HIV/AIDS prevention has not been widely implemented, particularly in the United States. When AIDS first began to appear clinically in the United States, it was dubbed gay-related immune deficiency (GRID). This “gay cancer” was labeled as such because it was believed that it was somehow uniquely associated with gay men. Although gay and bisexual men continue to make up the majority of U.S. AIDS cases, it is of course not true that AIDS is confined solely to gay men. The impact of the initial (and continued) association of the disease with gay men has, however, irrevocably shaped the historical response to it. Political opposition to funding for HIV and AIDS research has been prevalent because of the perception (and reality) that gay men are most affected by the disease. The epidemiological facts of AIDS set up a political war of “pro-AIDS” liberals versus “anti-AIDS” conservatives, with homophobia as the inspiration for the conservative army.
Many scientists believe that HIV prevention science is not as advanced
More recently, President Clinton signed into law a congressional bill that provided $50 million per year for the next five years for “abstinence only” education to be taught in American schools. All 50 states applied for these block grant funds (Associated Press, 1997) despite empirical evidence indicating that comprehensive sexuality education (that explores abstinence as well as issues such as contraception, homosexuality, abortion, and condom use) does not increase sexual activity in teenagers (the outcome that conservative forces fear these programs will produce) and may increase condom use and delay the onset of sexual intercourse (Collins, 1997). Moreover, it is extremely unlikely that the two-thirds of American teenagers who report having engaged in sexual intercourse are likely to all be dissuaded by abstinence only education, making such education seem of little utility to them (Collins, 1997). Political decisions like these, based in ideology rather than scientific data, are detrimental to HIV/AIDS prevention efforts because without discussion of sexuality—especially homosexuality—HIV education and prevention are impossibilities.
Another glaring example of politics being chosen over science can be found in the resistance to more wide implementation of needle exchange programs, including the U.S. government's ban on federal funds for needle exchange programs. Such opposition is also based in politics rather than empirical data. Ironically, the U.S. government itself has funded several studies to evaluate the impact of needle exchange programs, and all have found similar results: These programs serve to reduce needle sharing but do not increase drug use (Lurie and Drucker, 1997). Lurie and Drucker (1997) used mathematical models and estimated that thousands of lives could have been saved in the United States if needle exchange programs were not banned by the U.S. government.
All this political opposition stems from phobias common to the United States: sexphobia, homophobia, and junky-phobia. The discomfort that sexuality, homosexuality, and drug use engenders has led to
Failure to Target Interventions
to Those at Risk for HIV
The Advent of the HIV Antibody Test The lack of targeted interventions has also led to a diminution of the efficacy of HIV prevention efforts. A major turning point in the history of AIDS that contributed to this lack of focus was the identification of the virus associated with AIDS and the subsequent development of a test for its antibodies. Making a test for the AIDS virus widely accessible quickly became a priority for government agencies (Shilts, 1987). Gay men, in general, reacted to the availability of the test with skepticism, and community-based groups in cities such as New York and Chicago advised gay men not to take it. Instead, these groups emphasized the importance of practicing “safe sex” regardless of serostatus, the dominant view being that everyone was affected by AIDS regardless of their actual HIV status and that identifying those who tested seropositive would lead to increased discrimination or possibly even the quarantine of those particular people (Patton, 1990). In addition, few promising treatments for HIV disease were available, leaving people to question the utility of knowing one's HIV status.
The sentiment changed in urban gay communities, however, as some activists began to argue that test taking could promote behavior change and as some treatments became available to prevent AIDS-related opportunistic infections. The importance of testing also became further emphasized outside of gay communities with the disclosure that Rock Hudson, a Hollywood icon of heterosexuality (although a homosexually
Test taking thus became the centerpiece of AIDS “prevention” because it was believed that if victims could be identified, the spread of the virus could be halted by containing it within those individuals. In addition, people who got tested received counseling and information on how HIV is transmitted, a process that presumably would lead to a substantial decrease in risky behaviors. The advent of the HIV antibody test thereby inspired an epistemology of individual responsibility for HIV transmission with the complementary focus of HIV prevention on educating people about HIV transmission “facts” as the linchpin of prevention. It then became important for “everyone” to be tested, not just those groups at high risk. Once everyone knew the transmission facts, it was presumed that the spread of AIDS could be stopped.
In a bitter irony, the attempt to make AIDS “everyone's problem” woefully backfired in that because so much effort was put into generalizing the threat of AIDS, prevention efforts, including HIV testing and counseling, were not targeted to those really at risk. AIDS had become “de-gayed” to prevent AIDS-related prejudice and stigma (King, 1993), but the cost was profound: Prevention dollars and resources were not directed at gay men or IDUs for fear that funding agents and charitable donors would not empty their pockets for sexual and drug-using outcasts. In addition, testing was seen as “everyone's right,” not to be reserved for any special class of persons. Prevention efforts attempted to be nonspecific and diffuse, choosing to believe that everyone is at equal risk of contracting HIV. Such an ethos, although apparently well intentioned, was an epidemiological disaster. Instead of focusing prevention on the groups that needed it most, programs were made available to “everyone” and were not targeted to risk groups. For example, HIV testing and counseling, the largest federally funded prevention approach, does not adequately reach men who have sex with men and IDUs and their sexual partners. Rather, these programs are disproportionately utilized by other groups that are at much lower risk: Of the 2.4 million HIV antibody tests conducted in 1994, only 13% were administered to gay and bisexual men and IDUs (Bennett and Sharpe, 1996). This misguided approach has led to a need to refocus prevention to target
High-Risk Individuals within High-Risk Populations
Even when targeted to high-risk populations, however, researchers have reported difficulty in reaching the most at-risk members within those populations (Kegeles et al., 1996). For example, Kelly (1995) discusses the difficulty in recruiting high-risk men who have sex with men to individual and small-group interventions. In particular, men who have sex with men but who do not necessarily identify as “gay” or “bisexual” are less likely to attend such programs despite evidence that such “closeted” men are more likely to engage in risky sexual behaviors (Heckman et al., 1995). Similarly, Hoff et al. (1997) reported that in a sample of 1,001 gay and bisexual men, only 6% of the 142 who had engaged in unprotected anal intercourse in the previous month had been reached by an intervention consisting of counseling and testing (although 58% of this same group was reached by a community-level intervention consisting of volunteer outreach in multiple venues). Even though they are at higher risk for HIV, racial and ethnic minority gay and bisexual men are also less likely to attend intervention program sessions (Stokes et al., 1996).
Lack of Primary Prevention
with HIV-Positive Individuals
A curious, yet understandable, phenomenon also represents a portion of the failure to reach high-risk individuals with preventive interventions: Few primary prevention efforts are targeted to HIV-positive individuals. This issue is just now being seriously confronted among primary educators and prevention scientists. The lack of targeted interventions to HIVinfected individuals is attributable mostly to an entrenched fear of exacerbating the stigma that HIV-positive individuals already face. By targeting interventions toward people with HIV, educators and others involved with prevention have feared that the overwhelming message of such approaches would be branding HIV-positive people as purveyors of disease. This view has coincided with the “individual responsibility” theme that has historically surrounded AIDS discourse. Individuals are thought to be solely responsible for themselves, and if they choose to have unprotected sexual contact or share needles with an HIV-infected person, it is their fault for choosing to do so.
This view needs to be reconsidered. Although it is undeniably true that HIV-infected persons face considerable stigma, it is a mistake to forgo them as agents of interventions simply because they are HIV infected. Much altruism and care for others could be capitalized on if interventions were targeted to HIV-positive people. Moreover, the possibility that HIV-positive people may become infected with different (and perhaps drug-resistant) forms of HIV as well as other STDs provides an incentive for HIV-positive people to engage in safer sexual and needlesharing behaviors. It also makes epidemiological sense because targeting interventions to those who have HIV necessarily reaches individuals who are likely to transmit the virus. Yet HIV-positive people have rarely been targeted for interventions.
In sum, interventions need to be targeted to high-risk groups if they are to be successful. Among those who should be targeted are men who have sex with men, IDUs, and the sexual partners of both of these groups. In addition, the most high risk individuals within these groups need to be reached by preventive interventions, and primary prevention with HIV-infected persons needs to be undertaken seriously. By focusing interventions to these populations, scarce resources will be better utilized (DesJarlais et al., 1994).
INADEQUATE ALLOCATION OF RESOURCES
TO PREVENTION
HIV prevention has also not been more successful because of a lack of funding and resources for HIV prevention efforts. The previously mentioned emphasis on individual responsibility as well as a privileging of medical “cures” over behavioral preventive strategies have contributed to this failure to allocate adequate resources to prevention.
Individual Responsibility
Emphasizing individual responsibility has led to deemphasizing prevention programs. Because individuals are believed to be solely accountable for their behaviors, prevention programs are deemed unimportant. This discourse boils down to something like this: Everyone should know how to avoid HIV, so why do we need prevention? Among the many problems with this view is the fact that knowledge does not equal prevention. Although it may be true that most individuals in American society are
Biomedicine as the Popular Science
Prevention is unpopular in American culture. Medical cures are looked to instead. Case in point: Even though there is an effective vaccine for hepatitis B, few take advantage of it. Most believe that medicine will cure them once they are sick. Most STDs can also be avoided through the use of condoms, but many people choose to take antibiotics after they are infected rather than change their behavior first. As another example, the risk of heart disease and lung cancer can be severely reduced through diet, exercise, and quitting smoking, but many hope for medical cures once they become sick rather than preventing these diseases in the first place through behavior changes. Few people get flu shots even though they may help to avert serious discomfort down the road. The point is that prevention is less popular because the threat of disease is less proximal and that this unpopularity translates into the lack of energy supporting prevention research and programming.
Relatedly, within the scientific communities, biomedical research is often viewed as supreme. Behavioral research is the ugly stepsister of “real” medical research conducted with the gold standard of research: the randomized clinical trial design. Without “hard” outcomes such as blood test results, behavioral research is sometimes viewed as “soft” (as in the “soft sciences”). These perceptions come into play when research dollars are at stake and when value is placed on scientific findings. Should the study with blood draws and DNA testing be funded, or the one with only self-report outcome measures? Which study's results are more believable? Unfortunately, the process surrounding research often plays out in this manner.
Prevention has to date, however, without question been more successful than biomedical science in saving lives from HIV disease. Although new medical therapies show promise, many more lives are saved by primary prevention than by biomedical science. This is not to say that both approaches should not be encouraged but rather that prevention has
FAILURE TO ADDRESS LARGER SOCIAL PROBLEMS
THAT CONTRIBUTE TO THE TRANSMISSION OF HIV
A final reason for prevention of HIV and AIDS not being more successful is found in the lack of attention to social problems that contribute to the spread of HIV and the rapid progression of AIDS. Issues such as homophobia, racism, poverty, sexism, substance use, and homelessness are all important to consider in HIV and AIDS prevention. Although addressing these issues is daunting, it is necessary if the epidemic is to be controlled.
For example, gender roles and sexism are at play when one is attempting to prevent HIV and AIDS. Paying attention to gender roles and working to challenge sexism should be components of HIV prevention. Because the disease has been more prevalent in men, women's HIV and AIDS prevention and treatment needs have often been overlooked. Prevention programs based largely on models developed by grassroots gay male community organizations may not be as successful for women because they do not incorporate explicit attention to gender roles in their content. Women in heterosexual relationships may, for example, be in abusive relationships or be economically dependent on their male partners, thus making it more difficult to be assertive about condom use (Amaro, 1995). Women with children may be additionally concerned about their children's welfare if they are not sexually cooperative. Given that the use of condoms makes sex less pleasurable, it is difficult to ask a partner to wear one. Although the “female” condom has been developed as a female-controlled prevention device, many women have reported not liking it (Moore, 1997). Alternatives to these barriers are microbisides, which are less intrusive and can even be used by women without their male partners' knowledge. These products need to be better
It may seem idealistic to say that attention to social issues is important in HIV and AIDS prevention. It may even appear unrealistic to argue that it is possible to challenge these entrenched social problems. It is undeniable, however, that these problems are forces that contribute to the proliferation of HIV and AIDS. Although it certainly may be difficult to eradicate things such as sexism, racism, and homophobia quickly, it is quite possible to be aware of these issues when creating research protocols or prevention programs. The very attention to these matters in every step of these processes reduces their presence.
CONCLUSION
HIV/AIDS prevention science has written many success stories. Good stories, however, need be read. HIV and AIDS prevention will be more successful in the future if obstacles to it are addressed. These include political opposition and the failure to allocate ample resources to prevention, to target interventions to those most at risk for HIV, and to confront social problems that contribute to the transmission of HIV. The knowledge that scientists have worked diligently to produce will be most useful if these barriers to success are challenged.
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