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Early AIDS Activists Still Involved

  • Jan Sluizer

Twenty-five years ago, in the June 5th issue of its weekly Morbidity and Mortality Report, the US Centers for Disease Control and Prevention first identified a disease that was killing gay men in the Los Angeles area. It soon became known as AIDS, and was killing people of every sexual orientation, age, gender and nationality, all across the globe. Scientists continue to learn more about HIV, the virus that causes AIDS, but -- with 25,000,000 deaths since 1981 -- activists say there is still a long way to go.

By 1985, when California political activist Cleve Jones was diagnosed with HIV, he had already lost dozens of friends to what was still being described as the "Gay Cancer." He had left his job with the State government and moved home to San Francisco, to work on what he calls "the very first organizing efforts in the world to fight the new disease."

He remembers it as a terrifying time. "[We had] no information. Extreme fear and paranoia. Was the government doing this to us? Was this something the CIA had cooked up? All sorts of crazy ideas and mostly just fear."

Those fears of a government plot were soon laid to rest as doctors learned more about the virus that caused the new disease.

"The first cases were mysterious and frightening and stigmatizing and always led to death," recalls Paul Volberding. Dr. Volberding examined the first patients to contract AIDS in San Francisco and has been at the forefront of AIDS research ever since. He says over the past 25 years, AIDS has become much more manageable as a chronic disease. With testing programs in place, more people learn they are infected while they are still healthy. With new drugs, the HIV virus can be brought under control and patients can be kept healthy.

"The medicines that we have now really, really work very well and they are quite convenient," he points out. "We've gotten away from a lot of the [high] doses and specific medicines that caused a lot of the side effects that we saw early on. But we constantly need new medicines because, again, this virus mutates very quickly."

Dr. Volberding says one of the most important lessons the medical community has learned over the past 25 years is the value of working with patient groups and community organizations. One of those is San Francisco's Maitri AIDS hospice. It started in 1984 when a group of Zen Buddhists opened their personal living quarters to eight AIDS patients who had been shunned by their families, landlords and roommates. Today, a small staff and volunteers run the expanded hospice in a renovated Victorian house with 15 beds.

Former executive director Bill Musick explains that it operates as a home first, and secondarily, as a nursing facility. "It's that slight nuance that really makes the difference, I feel, in terms of how people feel cared for at the end of their life." And, he says, people come to Maitri because they know they'll get good care until the end. "Part of its [motto] is that 'people shouldn't die alone,' and we make sure that they don't. That's, you know, a really powerful and, I think, compassionate mission, and compassion is what Maitri is all about."

Compassion for those with AIDS was often in short supply in the early years of the epidemic. Dying gay men aroused little sympathy in Middle America. But Cleve Jones helped show how AIDS impacts everyone, with what's become the world's largest community art project.

He says he came up with the idea of a memorial quilt at a candlelight rally where marchers had posted hundreds of signs with the names of friends who had died of AIDS. "It was while looking at that patchwork of names up on the wall that I thought to myself, 'it looks like a quilt.' And [I] thought immediately of my grandmother and great-grandmother back in Bee Ridge, Indiana and the quilt [they made] that is still on my bed today. And I thought, 'What a wonderful symbol, what a perfect symbol of Middle America, middle-class traditional family values, and wouldn't it be nice if those traditional family values could apply here.'"

The AIDS Quilt now has panels with more than 83,000 names, and more than 15,000,000 people have seen it as it traveled to communities around the world.

For those still living with AIDS, Jones would like to see compassion on the part of pharmaceutical companies, to lower the cost of AIDS drugs. "The medications for keeping me alive, retail costs in the United States today would be about $2400 a month," he says. "The same drugs could be produced, generic versions, for just a fraction of that. So this is the biggest barrier to providing treatment to the rest of the world."

An estimated 39,000,000 people around the world are living with HIV/AIDS. The hope of activists like Cleve Jones is that as new drugs are developed, more money raised, and new policies implemented, the tide of the battle against AIDS will finally turn.

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