Response Of Treatment System
In New York City the drug treatment system is not integrated with medical treatment. The staff of drug programs had little experience in providing treatment for infectious diseases, and most of the actual spread occurred prior to an AIDS problem. The awareness that did exist was based on cases of AIDS among IV drug users, since antibody testing to monitor spread of the virus itself did not become available until 1984. The first cases among IV drug users that were recognized as AIDS occurred in the second half of 1981, shortly after the syndrome was recognized in homosexual men. The number of cases of AIDS among IV drug users then increased rapidly, doubling approximately every six months over the next three years. When antibody testing did become available in the summer and fall of 1984, the early results indicated that half or more of the IV drug users in the city were already exposed to the virus.[17]
T. J. Spira et al., "Prevalence of Antibody to Lymphadenopathy-Associated Virus among Drug-Detoxification Patients in New York," New England Journal of Medicine 311 (1984): 467-68.
These results were communicated to the staff of New York City drug treatment programs through an extended series of training seminars, informal consultations, and an extensive rumor network. The training sessions also presented the "best" scientific data then availableon HIV infection and AIDS: that there was no evidence for casual-contact transmission, that all persons carrying the virus must be assumed to be able to transmit it, that AIDS itself was essentially untreatable and fatal, and that only a minority of persons exposed to the virus were expected to develop full AIDS.
The rapid increases in the number of cases, as well as the early antibody test results, caused strong emotional reactions within the drug abuse treatment system. These reactions tended to follow a staged pattern, somewhat similar to the stages outlined by Elisabeth Kübler-Ross in her study of reactions to death and dying.[18]
Elizabeth Kübler-Ross, On Death and Dying (New York: Macmillan, 1980).
Stage One: Denial
The first stage, occurring from 1982 through 1984–85, can best be termed denial. In this stage programs tried to carry on business as usual in the treatment of drug abuse. AIDS was seen as a special medical problem that did not need to be integrated into the everyday functioning of drug abuse treatment programs. Intake and provision of treatment occurred as before, and no special effort was made to inform staff or clients about AIDS.
AIDS did not easily fit into the normal operation of drug abuse treatment programs. Organizationally, treatment of infectious diseases had not been integrated with therapy and counseling for drug abuse or dispensing medication for methadone maintenance. The number of AIDS cases among IV drug users was relatively small, and most program staff (and clients) associated the disease with male homosexuality. The IV drug use subculture tends to denigrate homosexuality, and the association between AIDS and homosexuality impeded frank discussions of the syndrome. There were concerns that dealing with AIDS would detract from or even contradict the primary business of getting drug abusers to stop using drugs.
Two aspects of this denial stage are particularly worth noting. First, the treatment staff believed that any emphasis on AIDS, because of its association with death, would undermine the hope an individual needs to overcome drug abuse problems. In their view, the hope for a new and better life is a vital part of giving up the short-term pleasures of illicit drug abuse and working through the difficult aspects of drug abuse treatment; if this hope was undermined, drug abusers might discontinue treatment. Second, the treatment staff believed that discussions about AIDS would highlight the difficulties in completely eliminating drug abuse
in any given episode of treatment, thereby reducing the clients' belief that they might be able to eliminate their IV drug use. A large percentage of persons in ambulatory drug abuse treatment continue to use illicit drugs while in treatment, and a large percentage of persons in residential treatment do leave and return to illicit drug abuse. Acknowledgment of a need to prevent AIDS among persons with a history of IV drug use would require confronting explicitly the discouraging evidence that a single episode of treatment does not result in complete abstinence from IV drug use in the majority of persons who enter treatment with a history of illicit drug injection. Treatment does serve to reduce IV drug use greatly, both during and after treatment, but complete elimination of IV drug use is a very difficult treatment goal, which often requires multiple episodes of treatment.[19]
D. R. Gerstein and H. J. Harwood, eds., Treating Drug Problems (Washington, D.C.: National Academy Press, 1990); R. L. Hubbard et al., Drug Abuse Treatment: A National Study of Effectiveness (Chapel Hill and London: University of North Carolina Press, 1989); U.S. Congress, Office of Technology Assessment, The Effectiveness of Drug Abuse Treatment: Implications of Controlling AIDS/HIV Infection (Washington, D.C.: OTA, 1990).
This is not just a problem of working with embarrassing evidence of the difficulties in treating IV drug use (as well as other forms of addiction). To discuss AIDS with a person in treatment raises the possibility of treatment failure. Indeed, a full education about AIDS, including information that the sharing of drug injection equipment spreads the virus, was often seen as planning for the failure of treatment to eliminate IV drug use.During the "denial" stage the treatment system largely tried to carry on as usual; that is, by providing drug abuse treatment without any special education of staff or clients about AIDS. The cognitive beliefs supporting this behavior were that the staff was not properly equipped for working with fatal infectious diseases and that making AIDS an issue in drug abuse treatment would likely undermine the success of treatment. Providing good drug abuse treatment, however, would reduce IV drug use and thus help to alleviate the AIDS problem. Underneath this behavior pattern and belief system, however, there was considerable anxiety about AIDS. This anxiety would become evident in the "panic" stage.
State Two: Panic
As the AIDS epidemic continued in New York, particularly during 1985 and 1986, it became very difficult for a treatment program to continue "normal" operations after a person in the program developed AIDS or AIDS-related complex. Development of HIV disease raised both realistic and unrealistic fears about AIDS. For clients and staff with histories of IV drug use, the appearance of AIDS or ARC served as a warning that they too might develop the disease. Since the person who
developed AIDS typically had been asymptomatic for a considerable time prior to the development of the disease, present health could not be taken as an indication of freedom from AIDS. The presence of AIDS or ARC in a client or staff member also set off fears of casual-contact transmission of AIDS. At the time, the official U.S. Public Health Service description was that AIDS was transmitted through "exchange of bodily fluids." The lack of clarity in this phrase accentuated fears that AIDS could be transmitted through urine, saliva, and sneezing or through such activities as preparing food or sharing the same bathroom facilities.
The occurrence of AIDS in a person associated with a client, such as a relative or sexual partner, was also likely to provoke panic in the program. For example, one client was asked to leave a residential treatment program because the client's husband, who was not in treatment at the time, had developed AIDS.
The panic phase was characterized by a search for information on AIDS. Information about routes of transmission was primary. Other information included the likely outcomes of full AIDS, ARC, and asymptomatic infection; the specific symptoms of ARC and pre-AIDS conditions; and the resources for meeting the practical needs of persons with AIDS, such as arranging medical care and social support from AIDS service organizations in the city.
From the beginning of the epidemic, there has been no evidence for any casual-contact transmission of the virus. This lack of evidence has not prevented widespread fears of casual-contact transmission. Drug abuse treatment staff are particularly susceptible to such fears because they are frequently involved in the handling of "body fluids" when collecting urine specimens for drug testing, and in communal living within residential programs. The lack of clarity in the phrase "exchange of bodily fluids" and the difficulties of proving that casual-contact transmission could not occur exacerbated the fears among drug abuse treatment personnel. As a result, they would sometimes try to get rid of the offending person with AIDS or ARC or the person associated with AIDS. A client who had clinical illness would be sent to a hospital and then would not be permitted to reenter the program even when his or her health would have permitted it. A clinically ill client who was receiving methadone would not be permitted to attend the clinic during normal hours but would be required to attend after normal hours, or not attend at all and be given the medication at home. Refusal to collect urines from persons with AIDS or ARC also occurred.
During the panic phase the treatment staff were forced to confront their fears—the specific fear of possibly contracting AIDS and a generalized fear of death that the epidemic was provoking even in persons who did not believe themselves to be at any risk for contracting the disease. To get through the panic phase, they had to do more than simply acquire new information. They also had to express fears and feelings, receive support for the legitimacy of the fears, develop "guidelines" for the handling of AIDS cases, invoke the authority structure of the program to reestablish professional behavior, and learn how to work with people who were dying. Working through the panic stage involved not only written communications and formal training but also staff meetings, the rumor network within programs, and interpersonal confrontations. Successful working through the panic phase led to the coping phase.
Stage Three: Coping
The coping stage has been occurring since 1986, and involves incorporating AIDS issues into the day-to-day operation of drug abuse treatment programs. In programs that are fully in the coping stage, all levels of the staff and clients receive AIDS education and training; and all clients with HIV disease receive drug abuse treatment. Typically, an AIDS coordinator or an AIDS task force is appointed for each program or clinic, and this person or group has ongoing responsibility for formulating policies regarding AIDS issues and for continuing education of the staff and clients regarding AIDS.
The education and counseling of clients are aimed at both reducing AIDS risk behavior and reducing unrealistic fears of casual-contact transmission. Information is provided about heterosexual and in utero transmission as well as transmission through sharing drug injection equipment. There is also active encouragement of "safe-sex" behavior through the distribution of condoms to clients. At this stage the treatment staff realize that preventing HIV transmission and AIDS is an integral part of working with persons with a history of IV drug use and with persons who are at risk for future IV drug use. The goal of preventing further HIV transmission (that is, preventing needle-sharing transmission by stopping drug injection) overrides any potential conflict between providing AIDS education and eliminating illicit drug injection.
Coping with the epidemic also involves expanding drug abuse treatment
capacity. The AIDS epidemic has increased the demand for treatment among IV drug users, and it is clearly a human and public health tragedy not to provide for the increased demand for treatment. New formats for treatment might need to be developed, to permit larger numbers of IV drug users to be taken into treatment for a given amount of resources. Treatment program staff have been generally supportive of expanding treatment capacity but often express concern that the present programs are already underfunded and that more resources are needed to enrich the quality of the existing programs. Consequently, they also support other efforts at preventing HIV infection among IV drug users. For example, they support a variety of prevention efforts, aimed primarily at IV drug users not in treatment, that do not involve elimination of drug injection. These include public education campaigns (in which IV drug users are informed about the risk of sharing drug injection equipment; or are given bleach, along with instructions on how to decontaminate used injection equipment; or are actually provided with sterile equipment) and programs to prevent persons at risk from starting to inject drugs. A syringe exchange program was started by the New York City Department of Health in 1988 and received mixed support from the drug treatment programs (prior to its termination in 1990 after a new mayor was elected). Some programs quietly supported the exchange, while others publicly opposed it as "condoning" illicit drug use or possibly taking resources away from the drug treatment system.
Treatment programs in the coping stage are also providing drug abuse treatment to persons with AIDS and with ARC, and to asymptomatic HIV seropositives. Fears of casual-contact transmission are well under control and are not permitted to interfere with humane treatment of persons with HIV disease. Staff have developed expertise in counseling regarding death and dying and in meeting the many practical needs of persons with AIDS when such persons are neither sufficiently ill to require hospitalization nor well enough to handle all tasks of daily living. Providing drug abuse treatment to persons with AIDS and/or ARC requires developing close liaison with hospitals that provide inpatient treatment for AIDS, as well as making some changes in the normal operations of the drug abuse treatment program. Clients with AIDS or ARC do have special medical and psychological needs, and providing for those needs requires alteration of program functioning.
In addition to providing treatment for IV drug users with AIDS and ARC, staff of programs in the coping stage frequently serve as consultants
to infectious disease specialists who provide inpatient treatment for IV drug users with AIDS. Infectious disease staff are not likely to have much experience with extended treatment for IV drug users. They will often need expert advice on how to recognize the behavior patterns associated with drug abuse and how to avoid discriminating against persons with a history of IV drug use. Closer cooperation between infectious disease personnel and drug treatment personnel has also occurred with the recent increase in HIV counseling and testing in drug abuse treatment programs. Clients who test positive need to be referred for medical treatment of their HIV infection, including antiviral treatment. As of mid-1990, however, only a comparatively small number of such clients were receiving antiviral treatment, so that this is clearly an area of needed improvement.
This coping stage sounds quite idealistic, and certainly not all programs that we have observed are managing to cope with all aspects of the AIDS epidemic all of the time. The AIDS epidemic has, however, led to increased dedication and skill levels among many drug abuse treatment staff. At the same time, there is a possibility that the staff may progress to a potential fourth stage.
A Potential Stage Four: Burnout
Coping with the AIDS epidemic has high costs, both in financial and in human terms. The episodes of burnout that we have observed have been in individuals rather than in programs as a whole, and in those individuals the burnout has not been permanent. The burnout has involved a sense of being overwhelmed, depression, hopelessness, inability to set priorities and organize work, and a confusion of purpose. Staff suffering from burnout typically have been in programs with numerous cases of AIDS or ARC among clients. These clients require considerable extra counseling as they face death; and they have many practical needs, such as housing, that can be difficult to meet. If the client has young children, there are the additional problems of potential HIV infection and AIDS in the children and/or providing for the children after the death of the parent.
Part of the strain involved in potential burnout comes about because the staff feel obligated to be optimistic and hopeful about the outcomes of clients' HIV disease and about preventing infection among the unexposed; but they do not have any clear indicators of success in either of these areas. A second part of the strain comes from their sense that the
needs created by the epidemic have completely taken over their professional lives. It seems as though they went from working in a drug abuse treatment program into working in an AIDS program without a conscious choice in the matter.
From our observations, protection against burnout is possible. Recognition of burnout as a potential problem is critical; in particular, those experiencing burnout must be given legitimacy for expression of their feelings within an appropriate setting. Peer counseling/self-help groups, both within and across programs, appear to be particularly useful in working with symptoms of burnout. Reducing burnout also requires realistic limitations on what program staff can be expected to do regarding the epidemic. Unfortunately, realism will often mean that many things that need to be done regarding the AIDS epidemic among IV drug users will be beyond the resources of drug abuse treatment programs.