Have We Treated AIDS Too Well? Rationing and the Future of AIDS Exceptionalism

The History of AIDS Exceptionalism

Throughout its history, AIDS has always been treated differently than other diseases. For instance, HIV testing has been governed by rules that require specific informed consent and prohibit reporting and third-party notification [1]. This exceptionalism assumed an economic form when zidovudine was approved in 1987. Zidovudine offered the first hope that the AIDS epidemic might be subdued, but access to this potentially lifesaving drug carried a substantial price tag. The cost of zidovudine therapy was a burden for persons with AIDS because as many as two thirds of these persons lack private insurance [7, 8] and because some who are insured have had their lifetime benefits limited [9-11]. Many who are uninsured have incomes above the qualifying level for Medicaid [12]. These constraints made it apparent that the medical promise of new therapies for AIDS would not become a reality without a new social promise.

This promise came in 1987 in the form of the AIDS Drug Assistance Program (ADAP), which provided zidovudine to all those who lacked adequate insurance coverage. Since then, each state has expanded its formulary of covered medications, established its own set of eligibility criteria, and determined its own fiscal contribution to the program. In 1990, state ADAPs were moved under the umbrella of the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act, which also provides funds for AIDS-related outpatient treatment, testing, home care, and training for health care providers. The ADAP strategy seems to have been successful in improving access to health care. In Illinois, for instance, approximately 1300 people without adequate health insurance receive prescriptions through ADAP every month [13].

AIDS Exceptionalism and Rationing

In December 1995, the arrival of protease inhibitors created enormous financial demands on ADAPs. Across the United States, ADAPs saw costs increase by as much as 400% in the first half of 1996 [13]. This was partly due to an increase in prescribing for current clients, but states also saw dramatic increases in enrollment when persons found that they could not afford the new standard of care. For instance, in Washington, D.C., in the first half of 1996, the client population doubled and costs tripled [13].

Because the CARE Act is not supported by an entitlement, state programs have no protection from the economic exigencies of an evolving health care market. Programs have found that they must cut costs by limiting access in various ways. Washington, D.C., has rationed care by curtailing enrollment; Illinois has lowered the income limit for eligibility; Missouri has established caps on individual expenditures; and Louisiana has created waiting lists for protease inhibitors [13].

Exceptionalism Is a Fragile Response

Although unfortunate, these developments were not unexpected, and growing pressure to ration will make exceptionalist programs increasingly fragile. Some degree of scarcity is inevitable, and rationing pressures will become increasingly intrusive over time, especially if advances in AIDS treatment proceed as hoped. As persons with AIDS look forward to longer survival and improved quality of life, their care will become even more costly. As this happens, ADAPs will face two challenges: rapidly increasing client loads and accusations of injustice from persons with diseases other than AIDS. Because of these challenges, exceptionalism may not provide a stable, long-term way to improve access to health care.

Exceptionalism for AIDS or any other disease is always a fragile social response because it encourages persons to participate in special programs that are supported by limited funding. Given the technological advances in AIDS treatment, such as zidovudine, protease inhibitors, and viral load testing, clients must turn to exceptionalist programs to obtain the new standard of care. A program may be able to weather such an influx of clients if it is supported by an entitlement, but the AIDS programs have not had this support. As a result, the AIDS programs are caught between an obligation to improve access and an obligation to reduce costs. As therapeutic innovations continue to multiply and become more expensive, persons with AIDS will turn to exceptionalist programs as the providers of last resort for the new standard of care. Without increasingly generous funding, ADAPs will be unable to meet demand.

One solution is to transform the CARE Act into an entitlement program. This would allow AIDS programs to offer open enrollment and would give them the flexibility to respond to the changing health care marketplace and changing client needs. However, this solution would be only temporary and would raise fundamental concerns about the injustice of providing programs for AIDS but not for other diseases.

When we suggest that special funding for AIDS treatment is unjust, we do not mean that unequal access to health care is unjust because all persons have a right to health care, although this may be true. Instead, we are making the more limited claim that persons in a society have the right to just allocation of that society's collective resources. According to this view, persons have the right to be treated equally unless relevant differences justify different treatment [14]. Therefore, one must demonstrate that persons with AIDS have a greater claim on society's resources than do persons with other diseases.

Such a claim might be justified by the stigma of “danger” or “deviance” associated with AIDS, by the discrimination inflicted on persons with AIDS [15], or by the harmful effects of physicians' and other providers' reluctance to care for HIV-positive patients [16-18]. Extra funding might be justified if health insurance benefits to persons with AIDS have been unfairly limited [9-11]. These arguments, based on the plausible premise that society has a duty to help those whose suffering is the result of social injustice [19], may be the prime motivation for exceptionalist approaches to testing and resource allocation.

In fact, these arguments may have played a larger role in the justification of exceptionalism than has concern about AIDS as a threat to public health. For instance, exceptionalist prohibitions against third-party notification and mandatory reporting may not benefit the public health. In addition, programs that provide health insurance and medications may do little to slow the AIDS epidemic. The stigmatization and discrimination that persons with AIDS have faced throughout the course of the epidemic may have been a powerful force behind exceptionalist policies [20].

However, such justification may be difficult to defend. Although AIDS is certainly accompanied by stigmatization and discrimination, so are many other conditions. Mental illness, physical disabilities, and cancer, to name only a few, all bring stigma to their victims. The CARE Act provides supplemental benefits to people with AIDS, but the absence of similar benefits for persons with other stigmatizing diseases is troubling. We believe that this discrepancy leaves AIDS exceptionalism vulnerable to accusations of injustice.

This injustice may threaten the achievements that exceptionalism has won. When exceptionalism leads to an unjust allocation of resources, it must face challenges from persons with other health care needs. As issues of scarcity become more prominent in health care decision making, these challenges will become increasingly intrusive. In the long run, we believe that exceptionalism will not withstand these challenges and that a fundamental reconsideration of exceptionalism will be necessary.

Conclusions

We have suggested that economic exceptionalism is a tempting short-term solution to resource allocation problems but that it is fragile and will not withstand the growing pressures of scarcity. In the future, the gap between society's treatment of AIDS and its treatment of other diseases will have to be narrowed. The question we must face, therefore, is whether the treatment of AIDS will be brought in line with the treatment of other diseases or whether the treatment of other diseases will come to resemble the treatment of AIDS.

The latter solution is attractive and is worth pursuing to the extent that scarcity permits. Over the course of the AIDS epidemic, activists have demonstrated that fundamental change is possible. Their willingness to think of AIDS and health care in unique and creative ways led to the CARE Act and also produced a wealth of valuable contributions across the spectrum of health care. For instance, persons with AIDS have been involved at the earliest stages of drug development [21]. Exceptionalism has allowed the re-examination of clinical trials [22, 23] and the accelerated approval [24] and distribution [25] of new drugs for AIDS. Activists and researchers have circumvented publicity embargoes imposed by medical journals and have brought critical attention to pharmaceutical pricing practices. These advances, if generalized, would benefit us all.

Some degree of inequality in funding and policy is necessary to permit these kinds of innovations. Nevertheless, the core of our argument is that exceptionalism is unjust. When interest groups call for changes, they must also lobby for fundamental changes in the health care system, as ACT-UP (the AIDS Coalition to Unleash Power) has done. We must work to build an ongoing dialogue that encourages the dissemination of innovations in research and access. We must use the media, the Internet, and the medical literature as public forums in which to discuss and share innovative ways to improve access to health care. Through a series of exceptionalist steps in which advances are tested, proven, and disseminated, we can work toward a health care system that can use the lessons learned in AIDS care for the benefit of all.

This solution presents a daunting challenge. Innovations in funding, research, and delivery will be vulnerable if they are for only one disease. Their survival depends on broad support, and this requires their timely dissemination. The innovations of AIDS exceptionalism represent a transformation of the health care delivery system that is unique because it began with patients rather than with physicians. Activists have demonstrated the power of consensus-driven reforms, a process that many view as ideal [26-29]. The challenge, therefore, is to develop a community that cares for all of its members, whatever diseases they have, the way the AIDS community cares for its sick and vulnerable. We need to realize that, at least metaphorically, we all have AIDS. We all need a health care system that is more responsive to our needs. This may seem idealistic, but AIDS activism has created a unique example of idealism translated into public policy that deserves our attention and our emulation.

Dr. Lantos: MacLean Center for Clinical Medical Ethics, University of Chicago, Department of Medicine, 5841 South Maryland Avenue, Chicago, IL 60637-1470.