AIDS FUNDING: The Risks And Promises Of ‘Exceptionalism’
An essay in the current Annals of Internal Medicine contends that the United States is disproportionately devoting scarce health care resources to AIDS patients, and argues that such AIDS "exceptionalism" will "create growing injustice and should be avoided." Authors Dr. David Casarett and Dr. John Lantos note that since the beginning of the epidemic, "AIDS has always been treated differently than other diseases," as evidenced in special rules governing HIV testing and in unique programs aimed at covering the costs of expensive AIDS therapies. In the authors' view, AIDS Drug Assistance Programs offer the best example of the threat exceptionalism poses. The programs are "inherently fragile because expensive therapeutic advances demand a rapidly increasing funding commitment." The authors note that ADAPs saw their costs increase 400% after protease inhibitors were introduced in late 1995. As a result, ADAPs "have found that they must cut costs by limiting access in various ways." And as AIDS therapies become even more advanced, they contend that ADAPs "will face two challenges: rapidly increasing client loads and accusations of injustice from persons with diseases other than AIDS."
A Moral Question
One option the authors suggest is converting the Ryan White CARE Act to an entitlement program, allowing ADAPs "to offer open enrollment" and "give them the flexibility to respond to the changing health care marketplace." However, they warn that "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 exceptionalism leads to an unjust allocation of resources," Casarett and Lantos write, "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." They write that a "just health care system must be comprehensive and cannot make special policies for special groups on the basis of their political muscle or lobbying skills." With that said, however, the authors "suggest that the best way to close the gap between AIDS and other diseases is not to eliminate special programs for AIDS but to integrate advances in AIDS care into the health care system." The authors point out that "[e]xceptionalism has allowed the re-examination of clinical trials and the accelerated approval and distribution 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."
A Community Of Caring
Taking from the example of AIDS activists, the authors write: "We must work to build an ongoing dialogue that encourages the dissemination of innovations in research and access. ... 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." They conclude: "The innovations of AIDS exceptionalism represent a transformation of the health car delivery system that is unique because it began with patients rather than with physicians. ... 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." (Note: Casarett is associated with the University of Iowa Hospitals and Clinics, and Lantos with the University of Chicago's MacLean Center for Clinical Medical Ethics) (Annals of Internal Medicine, 5/1 issue).