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Even Providers Experienced Stigma for Treating Gay Men

“‘What’s a nice nurse like you doing in AIDS care working with ‘those’ people?’” recalls a Ryan White HIV/AIDS Program-funded nurse when she first transitioned from Oncology to AIDS care. She says, “It was as if I had moved from an honorable sector of nursing to the ‘dirty’ part of health care.”

Stigma and its Power

The disease moved quickly through the gay community and brought with it great loss. Gay men questioned why some were getting sick and others were not. Those who were well lived in fear of an emerging rash or cough. Gay men began to find themselves, once again, despised and rejected. There was confusion, panic, and even ostracism within the community itself as the epidemic gained its foothold, but it was nothing compared with the discrimination, hostility, and blatant homophobia gay men were encountering. Some religious leaders called AIDS “God’s punishment.” Some employers fired people who became sick and some families abandoned their AIDS-stricken sons and brothers, many of whom had never told their families that they were gay. Fear and misunderstanding was at work but so was a willingness to disregard basic facts about what was already known at this early stage: HIV/AIDS was not readily transmissible.

So from one epidemic there sprung others – epidemics of isolation and cruelty, epidemics of unmet basic human needs, and of poverty. Many gay men with AIDS found themselves without homes due to unemployment, rising medical costs, and evictions. Stigma and shame kept some from seeking medical care and when they did they were often met with anger, fear, and a lack of compassion.

Some physicians and nursing staffs refused to provide treatment to those with AIDS symptoms. As people died, fear, stigma, and willful ignorance and refusal to deal with the facts at hand, kept many funeral homes from accepting bodies for burial. Obituaries frequently did not mention that the person died of AIDS, or an AIDS-related disease, as family members were too embarrassed to admit this about their son, brother, uncle, or father.

Activism and Action

Reeling from caring for loved ones, friends, and the shock of the sudden and mysterious epidemic, the gay, lesbian, bisexual and transgender (GLBT) communities quickly came to realize that if they didn’t take action, nobody would.

They created organizations like the Gay Men’s Health Crisis in New York City in 1981 and the San Francisco AIDS Foundation in 1982. Existing clinics serving the gay community, such as Fenway Community Health Center in Boston, MA; Howard Brown Memorial Clinic in Chicago, IL; and Whitman-Walker Clinic in Washington, DC; started AIDS programs. As cases appeared in other cities, similar efforts emerged. And all the while these were beginning to create models of care that HRSA would later adopt.

Close up of caucasion man

These early organized responses to HIV/AIDS relied heavily on those who had or knew someone with AIDS. They focused on piecing together networks of care and support. Volunteers included doctors and nurses willing to treat people with AIDS. Attorneys stepped forward to handle legal issues such as those related to evictions and insurance.

Case managers connected patients to much-needed social services, and volunteer buddies and support groups stood by the abandoned and provided respite for the exhausted families and friends of the sick. The lesbian community, in particular, rallied in support of their gay male friends, sometimes serving as the sole caregivers to the dying. Many of these individuals would eventually become Ryan White providers and grantees as well as HRSA administrators.

“The people I worked with were mostly there for the same reasons I was,” said Theresa Fiaño, a bartender and disc jockey at gay Seattle nightclubs in the early 1980s, and an early volunteer in local AIDS groups. “We knew someone who was affected and wanted to do something, whatever we could.”

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