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Town hall focuses on L.A.'s battle with HIV/AIDS

Advocates hope Sunday's event at Hollywood High School will help them gain more funding and more diversity in AIDS research.

October 16, 2009|Molly Hennessy-Fiske

John Duran was a young lawyer living in West Hollywood in 1984 when he joined what would become one of the nation's longest-running studies of HIV/AIDS.

"They were going to try to figure out what this thing was that was killing gay men," Duran said.

More than a thousand men signed up for the Los Angeles Men's Study, part of the Multicenter AIDS Cohort Study, or MACS, that also included 5,000 men in Chicago, Baltimore and Pittsburgh. During the next 25 years, the study generated scores of scientific findings as the group of mostly white, openly gay volunteers tested HIV-positive and sought treatment.

This week, with White House officials visiting Hollywood to discuss the administration's new national AIDS strategy at a town hall meeting, advocates reflected on the study's legacy as they prepared to call for more diversity in AIDS research.

As of last year, the population living with AIDS in Los Angeles County was 40% Latino, 35% white and 21% African American, according to the county's Department of Public Health.

When the L.A. Men's Study was proposed by Dr. Roger Detels, then dean of the UCLA School of Public Health, the population living with AIDS was far less diverse: 75% white, 13% African American and 11% Latino.

Detels started by recruiting gay student volunteers but wanted a bigger group. He posted ads in gay magazines and contacted gay activists and lawyers, among them Rand Schrader at the L.A. Gay and Lesbian Center in West Hollywood.

Detels told potential volunteers they would have to take blood tests, and submit to physical exams and surveys twice a year. Although their records would remain confidential, they would have to tell him their names.

Schrader, who had recently become the state's first openly gay municipal judge, was among the first to volunteer. Many others refused.

"This was the midst of the sexual liberation movement, bath houses were flourishing, gays and lesbians were seeing renewed levels of recognition in society and there was concern this would set us back," said Schrader's then-partner, Geo- Cities founder David Bohnett, who did not join the study.

Within about a year, Detels had recruited 1,647 volunteers, mostly middle-class professionals motivated by fear of the mysterious new disease.

'Friends dying'

Actor Dale Reynolds, 65, was living in West Hollywood, read about the study in Frontiers magazine and immediately signed up. "I had so many friends dying around me, I felt I really had to do something," Reynolds said.

Duran, then 25, joined the study at the urging of roommate Jon Stiller, also 25, who was working as an executive assistant.

Tests later showed that about half of the volunteers were HIV-positive.

When the first HIV test was developed in 1985, Duran, Stiller and Reynolds were tested through the study's UCLA clinic. Reynolds and Duran were negative. Stiller was positive, and he was devastated.

"I pledged to him that I would stand by him no matter what," Duran said.

All three continued to be tested for the study, Reynolds and Duran every six months, Stiller every three months.

The next year, the study began to show evidence that unsafe sex leads to HIV, which causes AIDS.

As Stiller got sicker, in and out of the hospital with infections, Duran admitted in his surveys to risky behavior, including unsafe sex.

"I was in a very dark place," he said. "Everybody that I loved or had loved was dying."

Reynolds remained HIV-negative but was attending more funerals, including one for an African American friend in Inglewood whose family insisted he died of cancer, not AIDS.

Stiller tried AZT and other antiretroviral drugs, but in 1992, he died. He was 33.

Schrader died a year later. He was 48.

By then, Duran and Reynolds had each lost more than 100 friends to AIDS.

Duran would walk through the heart of West Hollywood on Santa Monica Boulevard, haunted by the sight of AIDS patients with telltale purple Kaposi's sarcoma lesions. He figured it was inevitable that he, too, would be infected.

In 1994, Duran tested positive. His doctor told him he would not live to see the millennium. But he stayed in the study, started taking AZT and, later, protease inhibitors.

In the late 1990s, Detels realized some people were missing from the study -- African Americans and Latinos.

The percentage of Los Angeles County's AIDS cases diagnosed among white men dropped from about 56% to 34% from 1991 to 1998, while the percentage of cases among Latino men increased during the same period from 25% to 40%, and among African American men from 17% to 23%, public health surveys showed.

Yet only about 10% of MACS volunteers were minorities, mostly because researchers had recruited openly gay men. Many African American and Latino men who had sex with men did not consider themselves gay.

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