Sawyer himself had become symptomatic in the early onset of the virus, in ’81 when the first reports on HIV were coming out, and his boyfriend died from complications due to AIDS in 1984.
“I was extremely angry that I hadn’t been able to do anything to save my boyfriend’s life. I was still grieving,” Sawyer said. “So I turned my grief and anger into rage and action and got involved with the movement.”
Sawyer had already been told to “get his affairs in order” when he was finally diagnosed with HIV in ’83 after showing symptoms for years. His doctors had initially told him it was Hopkins disease or mononucleosis, but when the source of his ailments was discovered, Sawyer said he was told he’d be dead in two years.
We carried the people who had died of AIDS from our membership through the streets of New York in open caskets … We were saying if you’re going to do nothing about the genocide, you’re going to have step over our bodies and smell our rotting flesh.
We carried the people who had died of AIDS from our membership through the streets of New York in open caskets … We were saying if you’re going to do nothing about the genocide, you’re going to have step over our bodies and smell our rotting flesh.
The situation was bleak. Sawyer said there was a limited number of hospitals in New York City that would accept people with HIV/AIDS, and only two funeral homes that would bury people who had succumbed to the illness. Knowing your status, he said, echoing King and Vergel, was in fact detrimental, because it could mean being fired or discriminated against.
It was amid that darkness that the dawn of HIV activism came about. In March of 1987, Kramer and Sawyer founded the AIDS Coalition to Unleash Power (ACT UP), a radical AIDS activism organization that sought to wake people up to the devastation of HIV/AIDS.
Dawn of HIV activism
ACT UP began meeting regularly and planning demonstrations of civil disobedience. Sawyer described one such action, an effort to force the government to develop medically appropriate housing for people with HIV because the shelters were full of people with tuberculosis, which people with HIV were particularly susceptible to.
“We collected furniture when apartments put them on the street with my pickup and stored it in the basement of my brownstone in Harlem,” Sawyer said. “Then we’d take the furniture to lower Manhattan and block both ends of the intersection by setting up living rooms and kitchens and bathrooms in the street and chaining ourselves to the toilets and beds.”
Sawyer said the city had to collect the furniture in tow trucks and use chain cutters to release them from the furniture. Lower Manhattan was tied up and on the news, and ACT UP’s demand of medically appropriate housing, Sawyer said, was met within less than a month.
Among ACT UP’s targets was President Reagan, whose administration, Sawyer said, had mocked those with HIV. But other targets included the National Institute of Health and the Food and Drug Administration (FDA) for, as Sawyer put it, not doing anything to develop treatment. The mayor of New York, Ed Koch, was also a target for not doing anything to help gay people.
In these aims, ACT UP was uncompromising and willing to shock people who preferred to ignore the epidemic. He talked about demonstrations where the ashes of people who had died because of AIDS were scattered on the White House lawn.
“We carried the people who had died of AIDS from our membership through the streets of New York in open caskets in funeral processions to make the government and society in general smell, see and be disrupted by our literal dead bodies,” Sawyer said. “We were saying if you’re going to do nothing about the genocide, you’re going to have step over our bodies and smell our rotting flesh.”
“Lazarus effect”
In 1996, new drug therapies came out, a combination of medicines known as antiretroviral therapy. For King, that was the demarcation between life and death, and the moment he realized he would live.
“People who were dying were coming out of their deathbeds,” he said. “It was only then that I could exhale and go, OK, I think I’m going to be around a while longer.”
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In its wake, HIV had taken much from King. His boyfriend Emil had died. Many of his friends had died. He had been prepared to die young. He, like many gay and bisexual men with HIV, had been holding on to a folder with his memorial service plans. Then, another world opened up.
“All sorts of things happened to us after that,” King said. “We made changes in our jobs and our relationships. I broke up with a longterm boyfriend. I know a lot of men who did that. The person you want to die with isn’t necessarily the person you want to live with.”
Vergel’s boyfriend, Calvin, died of “wasting” in 1992, as Vergel described it. Vergel, because he is among the men whose virus mutated and was aggressive, said he didn’t have an undetectable viral load until just four years ago. It was only then, he said, that he breathed a sigh of relief.
“At the beginning, you wonder how long this one is going to last,” Vergel said of each new treatment. “But then I wondered two years ago, maybe this is it.”
Sawyer, who is still active in ACT UP, said it was in ’96 when things changed for him.
“The protease inhibitors came out in ’96, and my health started rebounding pretty miraculously — the Lazarus effect that people often write about,” he said, referring to the experience of being on death’s door and then being revived.
He also said it was around this time when it finally became profitable for pharmaceutical companies to get involved in the research and production of HIV treatment.
An ongoing battle
According to King, Vergel and Sawyer, the fight against HIV/AIDS is far from over. For Sawyer, there are many vulnerable communities still at risk, and he said drug companies are still putting profit over the wellbeing of people with HIV.
“We really have to work on social equity and equitable actions to health care and to HIV education testing treatment,” he said. “There are so many people, poor people and people in rural areas, trans people and people of color, who don’t have equitable access to testing or treatment, and they continue to die of AIDS.”
Vergel said while advancements in treatment like pre-exposure prophylaxis (PrEP) are now available and can reduce the viral loads of people with HIV to undetectable, people with HIV still die before they should, and the mental and emotional scars linger.
“Some of us have PTSD,” he said. “But some of us have managed to put that aside, because life goes on. We are celebrating the success of anti-retrovirals. Every gay man should be on PrEP, and every gay man should get tested.”
King has since immersed himself in the world of HIV activism, running the website My Fabulous Disease, where he writes about his experience that began with a phone call in West Hollywood in 1985. He said he wants a new generation of gay men to be proud of the community they come from.
“We stepped up and faced down primal fear and hatred at a time when no one else would take care of us,” he said. “We took care of one another.”