The Future Of Policy For Hiv
Four uncertainties will have a profound influence on the politics of the HIV epidemic. One, discussed above, is how the states and the federal government will address the general problems of paying for the care of people with chronic diseases and of providing access to care for the uninsured and the underinsured. The price of the epidemic of HIV infection will surely increase, whether new strategies to finance treatment are specific to this epidemic or address the fundamental problems of health policy in the United States. What is uncertain, however, is the total price and the politics of paying it.
The other three uncertainties arise at the intersection of politics and policy with biology and human behavior. The first is uncertainty about the natural history of the virus—whether it will mutate and, if so, how it will mutate, and how it will respond to efforts by scientists to produce vaccines to inhibit its infectivity and drugs to reduce or prevent its effects.
The second is uncertainty about the number and distribution of the sexual behaviors that transmit infection with HIV and about the effectiveness of various policies to persuade people to modify these behaviors. There is little evidence about the number, distribution, race, ethnicity, and socioeconomic class of homosexuals, of bisexuals, and of heterosexual people who practice unprotected anal intercourse. Moreover, there is little research-based knowledge about the relative effectiveness of various methods of inducing fear and prudence and thereby changing people's sexual behaviors.
The third area of uncertainty concerns the number of people who use addictive drugs and the effectiveness of measures to change their behavior. Estimates of the number of people who use intravenous drugs are mainly conjectures based on extrapolation from the number of people who seek treatment. Moreover, little is known about the linkage of crack, heightened sexual activity, venereal disease, and HIV infection. There is impressionistic evidence that drug-using behavior among more affluent people is linked to HIV infection in areas as diverse as the suburbs of New York and rural Georgia.[23]
Emily H. Thomas and Daniel M. Fox, "AIDS on Long Island: The Regional History of an Epidemic," Long Island Historical Journal 1 (Fall 1989): 92-112. For rural Georgia, personal communication from Charles Konigsberg, Jr., member, National Commission on AIDS.
Evidence about the effectiveness of programs to persuade drug users to change their needle-using and sexual practices has, to date, been more persuasive to advocates than to political leaders.These uncertainties, taken together, make impossible any predictions, or even very many recommendations, about future policies. Numerous alternative scenarios were being debated in late 1990, when this essay was revised for publication in this book. The authors of most of these scenarios assumed that the epidemic would become increasingly expensive to treat, as a result of advances in therapeutics, and that it would continue to have a disproportionate impact on blacks and Hispanics. Thus, most scenarios assumed that the epidemic would make increasing claims on scarce public funds but that it was unlikely that a powerful coalition of political leaders who have white, relatively affluent constituencies would be eager to grant these claims. At the end of 1990, most political leaders seemed to agree that the public attitude
(and that of most of their colleagues) toward HIV infection had become "massive apathy," as one powerful state legislator said.[24]
The legislator was David C. Hollister, who chairs the health appropriations subcommittee in the Michigan House of Representatives. Lest anyone mistake his position, I must emphasize that Hollister made this comment in order to emphasize the importance of overcoming this apathy and to underline the difficulty of doing so in difficult economic times. The comment was made at a planning meeting for a USPHS workshop on AIDS.
Scenarios are inevitably extrapolated from current events. As recently as 1987, for example, a few serious scenarists were conjecturing a rapid spread of HIV infection among affluent white heterosexuals. By 1989 such a scenario was regarded as alarmist. In 1986 and 1987 most scenarios assumed that AIDS was a disease with a relatively swift and terrible course that would, for the near future, not be treatable. By 1989 most health professionals talked about AIDS as the end stage of a chronic disease of uncertain course that could be modified by chemical therapies. Any scenario is likely to be wrong.
For almost a decade, however, HIV infection has dramatized the dilemmas of health policy in the United States. HIV disease is an expensive disease to manage, but our policies distribute most of the resources for managing expensive diseases through Medicare and Medicaid payments for long-term care for the elderly. Prevention is the most cost-effective intervention, but we know very little about the effectiveness of different strategies and have no routine way to pay for implementing them. We spend an unusually large proportion of our national income on health care, but increasing numbers of people are dependent on the inadequate care that is provided by state and local government as payers of last resort. We generously finance biomedical science, but the results of that effort do not translate quickly into measures that reduce the incidence and pain of disease.
In sum, the epidemic of HIV infection continues to reveal what many people already know about health policy in the United States. By doing so, the epidemic clarifies the difference between knowledge and power, and between concern, even compassion, and effective political will.