Securing Access to Care

In the first years of the epidemic there was little that medicine could offer those with HIV. Indeed, that was the context within which AIDS activists struggled to increase access to experimental trials. As the prospects for clinical intervention improved, first with the use of prophylactic treatment to prevent Pneumocystis carinii pneumonia and other opportunistic infections and then with AZT, the first widely prescribed antiretroviral agent, it was inevitable that the inequities of the U.S. healthcare system would be encountered.

Some who needed treatment had private insurance— although they frequently faced efforts on the part of their insurers to deny them coverage for their HIV-related conditions; those who were poor or who became impoverished because of their disease could qualify for Medicaid; but many remained unprotected (Green and Arno). To meet the needs of the latter group, special programs were developed. The federal government, through the Ryan White Comprehensive AIDS Resources Emergency Act of 1990, directed significant sums to localities to provide medical services. Among the initiatives under the act was the AIDS Drug Assistance Program (ADAP), designed to pay for AIDS-related medicines. Like the End Stage Renal Disease Program that assured access to dialysis and transplantation regardless of the ability to pay, these AIDS programs left untouched the basic patterns of medical inequality.

When the protease inhibitors emerged in the mid-1990s and combination antiretroviral therapy became the standard of care, the system was strained to the limits. Medication costs alone for those receiving care could range from $10,000 to $15,000 per year (Deeks et al.). A 1996 review of dramatically improved therapeutic prospects added the caveat that the new achievements were important "at least for those socioeconomically privileged" (Richman, p. 1887). ADAP experienced persistent shortfalls in funding. When that was the case, it was necessary to resort to a host of rationing strategies (Henry J. Kaiser Family Foundation). At one point, nearly half of the ADAP programs limited access to protease inhibitors (Carton).

The remarkable advances in therapeutics have provided a critical element in the argument that the exceptionalism of the epidemic's early years is no longer appropriate. It is therefore a remarkable paradox that the very same achievements have set the stage for challenging the exceptionalist programs that seek to ensure—however inadequately— access to those same treatments. These expressions of disquiet must be understood, at least in part, as a reflection of concern that the American AIDS epidemic may no longer be seen as immediately threatening, that the unique services for those with HIV would be vulnerable unless they were embedded in a broader system of a just healthcare system.

On an international plane the prospect of effective antiretroviral treatment would pose challenges vaster by many orders of magnitude. What justification was there for a system of pricing that made the cost of drugs beyond the reach of the desperate? Could markets ever respond to need where effective demand was nil? Could the monopoly confirmed by patent rights be compatible with a response dictated by claims of the dying? Was the treaty on intellectual property rights, incorporated into the World Trade Organization's international regime, a barrier to survival in context of the AIDS epidemic? What moral obligation did the wealthiest nations have to the poorest to provide the resources necessary to purchase the new lifesaving agents and build the medical infrastructure necessary for their appropriate administration? Was there any reason to believe that a global community that permitted millions to die each year from treatable and preventable diseases such as tuberculosis and malaria would respond differently in the face of AIDS?

AIDS activists ultimately seized on this issue and began an international campaign to confront the pharmaceutical industry. What might have seemed an utterly quixotic undertaking would ultimately, however, take on worldwide dimensions linking protesters in the United States, France, and South Africa (Berkman), institutional proponents of global health such as the World Health Organization, and a sympathetic public. By the end of the 1990s the pharmaceutical industry was placed on the defensive, perceived as protecting narrow self-interest when the lives of millions were at stake. Against the claims that high prices were necessary to fuel the engine of research, and that patent protections were crucial to spurring investments in drug investigations, those who sought to turn the terms of discourse asserted that urgency demanded that the barriers to drug access tumble.

Ultimately, under pressure from generic drug manufacturers, prices began to fall, and pharmaceutical firms began to accept the notion of differential or equity pricing.

As prices began to fall, it became ever more apparent that even if drugs were to be provided at cost, even if the principle of equity pricing were to guide sales, even if nations pursued the option of compulsory licensing and parallel imports, the cost of providing antiretroviral therapy was simply beyond the reach of the poorest and most HIV-burdened nations. And even if drugs could be paid for, the necessity of a medical infrastructure that could offer and monitor the use of drugs in a way that was attentive to the needs of individual patients and the risks to public health from drug resistance would require huge investments. This was the context within which a remarkable movement would take shape to create a massive funding effort to respond to the threat of AIDS.

The moral urgency of AIDS treatment was amplified by United Nations Secretary General Kofi Annan, who called for a global trust fund that would spend $7 to $10 billion a year over an extended period to face the threat to the world's poorest people. Most striking was his assertion that the care that had for so long eluded men, women, and children in the less-developed nations was a matter of moral right. Everyone who was infected should have access to medicine and medical care. That was a moral imperative. What was the unfortunate had become the unfair; inequality had become inequity (Bayer, 2002).

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