In 1981, when the first cases of HIV were reported in the U.S. Centers for Disease Control and Prevention (CDC) Morbidity and Mortality Weekly Report,1 many rural Americans felt removed from what was perceived as a disease restricted to White urban gay men, but HIV was slowly creeping its way into rural towns. Gay men who had once left their small communities for the freedom and anonymity of city life came home to their rural roots to quietly die.
Many HIV-positive men witnessed firsthand the way HIV could rob people of their health, livelihoods, friends, and partners. As Henry, a long-time survivor recalls, “It felt like I had closed the eyes of everybody I loved.” And though families often tried to offer support, the communities in which they lived typically lacked the resources—and the willingness—to help. Stigma abounded, and friends, churches, even doctors rejected many HIV-infected individuals. Henry says, “I got my test results from a person dressed in what looked like an astronaut suit. He came into the room, dropped the diagnosis on the table and said, ‘Go home and die like the rest of you.’”
Physicians and hospice professionals in rural areas who were willing to help in those early years often had only palliative care to offer. Sheila McCarthy, project officer for the Health Resources and Services Administration (HRSA) HIV/AIDS Bureau (HAB), says, “I remember getting all these phone calls from people saying, ‘Can we use money for this? I have a patient who needs a new bed, a mattress.” The goal was to help people die comfortably, and in peace.
In the early years of the HIV/AIDS crisis, one problem facing people living with HIV/AIDS (PLWHA) in rural communities was a lack of awareness about the disease. For some people, HIV/AIDS was a problem for the major U.S. metropolitan areas, not for the small towns and farms that seemed to preserve a strikingly different lifestyle than that of city living. This identification of HIV/AIDS as an urban disease was true to a large extent in the early years of the epidemic. By July of 1982, almost 87 percent of reported AIDS-related illnesses occurred in five States dominated by major urban centers: New York, California, Florida, New Jersey, and Texas.2
By the late 1980s, however, the number of AIDS cases in rural areas began surging, rising 32.6 percent in nonurban areas from 1988 to 1989, versus just 4.2 percent in cities.3 This sudden rise signaled the epidemic’s reach into communities both large and small. Kathie Hiers, chief executive officer of AIDS Alabama, remembers vividly that period of rapid encroachment: “I lost so many friends that at one point I threw away my address book and started over,” she says.
The Challenges of Rural Life
McCarthy underscores that there are different types of “rural,” pointing out that rural New England varies significantly from the frontier States and that Alaska represents an entirely different experience. As a HRSA Title II (Part B) manual indicates, “No single model of service delivery can accommodate the unique needs of every rural area, in part because of [the] diversity in terms of population density, geographic size, and pool of providers.”4 According to the manual, for example, “The number of persons per square mile ranged from a low of 8.1 to a high of 148.3 in one study of rural HIV/AIDS services.”5