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Like many gay men, lesbian women, and their allies, Fiaño went on to work in a community-based organization. “In those first years, it was very much a family of individuals who became professionals who were always committed to the cause of helping people living with their HIV.”10

Volunteers and activities within the gay community helped build the first networks of AIDS care and support by strongly advocating for a robust public response to the epidemic. Need still far outstripped available resources. The needs of persons with HIV/AIDS were growing exponentially with every newly diagnosed case.

The gay community could not on its own build public demand for action and create the political will in Washington to create the large response warranted by the scope of the epidemic.

Care Out of Reach

In 1982, The New York Times estimated the cost of hospital care at $64,000 per patient.11 The financial burden associated with the disease was overwhelming for people living with HIV/AIDS. Patients were so sick that they spent their days in and out of emergency rooms, doctors’ offices, and in hospital beds. The need for medical care and support was constant. People desperate for treatment options used their financial resources to try to find a cure wherever they could, and with whatever rumored medication or treatment they could find.

By 1986, human trials of a drug called AZT (zidovudine) were underway at the National Cancer Institute and at Duke University. The studies showed marked clinical improvements in the patients who received AZT over the placebo and just seven months into the trial, the results were so promising that the unblinded study was halted and indications for the treatment recommendations were created to begin distributing medications outside of the research setting. In March 1987, the U.S. Food and Drug Administration (FDA) approved AZT to treat HIV/AIDS. Once approved, however, the drug’s price rose to approximately $188 per bottle (between $7,000 and $10,000 per year per patient depending on individual dosage).12

For many men living with AIDS, $7,000 annual costs of an AZT regimen might as well have been $7 million. Either because they were fired or simply too sick to work, financially self-sufficient men with HIV/AIDS lost their jobs and their health insurance. Without health insurance, most found the cost of care, including regular doctor’s visits and hospitalization with opportunistic infections, out of reach.

The gay community advocated for funding for research, prevention, and care using political influence and networks to work for change. Having learned much about what was needed to care for those living with the disease, they lobbied on Capitol Hill demanding better and affordable health care and successfully pushed for changes in the testing and approval processes for prescription drugs. There were small gains in terms of research dollars and funding for outreach and awareness and they pushed for more. HHS, including HRSA, began to respond even before there was any hope of a sweeping inclusive program but many of HRSA’s early initiatives paved the way for, and are subsumed into, the Ryan White HIV/AIDS Program.

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