North Carolina and the Problem of AIDS: Advocacy, Politics, and Race in the South

SIX. Get Real. Get Tested: AIDS as a Chronic Disease in the American South

CHAPTER 6 GET REAL. GET TESTED. AIDS as a Chronic Disease in the American South In 1996, over a decade had passed since David Jolly first heard of HIV/AIDS, but there he was, still trying to push North Carolinians to act against the disease. His context had changed considerably. He no longer struggled in isolation: he now served as vice chairman of a blue ribbon panel of health professionals called the North Carolina AIDS Advisory Council. HIV/AIDS no longer posed such a threat to his friends: black heterosexuals and men who have sex with men (MSM) were more likely than white gays to acquire the virus in North Carolina; drug users and their sexual partners were at particular risk.1 And the virus no longer spelled doom for those infected by it: within the previous year, protease inhibitors and Highly Active Anti-Retroviral Therapy (HAART) had cut AIDS mortality considerably. In December 1996, Jolly and his team released a report that prodded North Carolina to meet the chronic needs of people with AIDS. By 1996, AIDS had dramatically transformed from the disease that first presented itself to Jolly and his colleagues over a decade earlier. The disease had become chronic and manageable, and activists, politicians, and health workers scrambled to find policies that would best control the epidemic. Finding “best policies,” however, proved difficult, in part because various interest groups disagreed about what constituted “best” and in part because so many of the solutions still focused on individual behavior change. Since the AIDS epidemic flourished at the intersection of individual risk and sociostructural deficits, the individualist solutions did little to address the larger-scale structural issue that put groups of people at risk for HIV/AIDS. And since HIV/AIDS disproportionately affected African Americans, blacks in North Carolina continued to acquire HIV more frequently than the rest of the population, and their health fared worse once they got it. By the end of the 1990s, HIV/AIDS would become devastatingly endemic among African Americans in the state. In 1996, the picture of AIDS in North Carolina was improved but still bleak. In December of that year, Jolly and his colleagues on the AIDS task AIDS AS A CHRONIC DISEASE109 force compiled an overview of the epidemic in the state. At that time, almost 10,000 North Carolinians were living with HIV. The mortality rate from AIDS was declining, which was excellent news, and the number of people diagnosed with HIV infection had also clearly fallen, although this last number was relative to the peak of new infections reported between 1992 and 1995 (part of this “spike” likely reflected new definitions, and better, more complete reporting of prevalent cases).2 HIV infection remained a problem, however : the disease led causes of death for African American men aged fifteen to forty-four and was ranked as the second leading cause of death for African American females and of North Carolinians in general between those ages. More than 20 percent of new infections were coming from people aged twenty-five and younger. Ominously, in 1995, North Carolina had taken the lead among its neighboring states in the number of new and cumulative HIV infections.3 HIV/AIDS continued to be a very real threat in North Carolina, exhibiting several worrying trends, and prevention remained essential to the fight. AIDS therapy proved equally essential, of course, and in the 1990s patients and clinicians had a growing number of options from which to choose. At the same time, however, the growing burden of care associated with AIDS fell increasingly to states. This rendered people with AIDS vulnerable to whatever gaps, inefficiencies, and injustices existed in a state’s health infrastructure . In North Carolina, state officials began buttressing the state’s HIV care response in 1987. Legislators used federal funds to make AIDS drugs available to those lacking the means to pay for them on their own. In the first years of the program, legislators set eligibility criteria remarkably low, at only 85 percent of the federal poverty level (FPL).4 Frequently, as Richard Rumley found in eastern North Carolina, this meant people with AIDS could qualify for Medicaid before they qualified for the state’s drug assistance program, because the income eligibility levels for Medicaid were higher.5 This was true even after the government made these drug assistance funds permanent through the Ryan White CARE Act’s AIDS Drug Assistance Program (ADAP). By 1995, it had become clear that this eligibility...