30 Years After The Plague The Long Term Survivors Tell It How It Was
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| The Gay Men's Health Crisis (GMHC) holds the first AIDS Walk New York in 1986 in Manhattan, New York. Photo courtesy of GMHC.1996-98 AccuSoft Inc. / |
"If you could take a test that would tell if you would be alive in two years, would you take it?"
That was the question Mark S. King said he had to ask himself in the early '80s when friends and loved ones were dying of the "gay plague."
"I decided I wanted to know," King told NBC News, reflecting back on the day he decided to get tested. On March 15, 1985, King received a call from his friend, a nurse, who had discreetly tested him for the virus — he was positive.
Gay men weren’t supposed to get tested at the time, King said because there wasn’t a single treatment available anyway. In fact, activists were urging people not to take it.
“The only thing that could happen would be getting fired from your job or kicked out by your roommate or disowned by your family,” King explained. “None of the outcomes were good.”
"AWAITING GAME"
America was in the throes of panic on the day King picked up the phone in Los Angeles. On TV, politicians on both sides of the aisle were debating in earnest whether gay people should be quarantined. In the White House, Reagan hadn’t so much as mentioned AIDS. But everywhere and every day, friends, relatives, acquaintances and partners were dying.
“It was like a 'Twilight Zone' episode where everyone in town just starts disappearing,” King said of that time. “It was the bank teller at your bank who wasn’t there one day. It was your favorite bartender. It was the guy who did your hair. They just stopped being there.”
Death was the last thing King thought he would have to confront when he moved to West Hollywood from Houston to pursue an acting career. He was 24 years old and eager to enjoy life. Instead, he found himself at an epicenter of the HIV outbreak that would shape the gay world in the United States for years to come.
“Numb,” King said of what he felt when his friend told him he had tested positive. “I was simply numb. I immediately went into denial. Protective denial. ‘Maybe I’ll be someone who survives,’ I told myself.”
But King had no evidence to suggest he would. Everyone he knew who had been diagnosed had gone to the hospital and died. The bars were emptying out. No one felt like celebrating anymore, he said. Life was, as King described it, “a waiting game.” And so he waited for the day he would get a cough, or see a spot, and the countdown would begin.
“I FELT BOMBS WERE DROPPING ”
A year before King's life-changing phone call, in 1984, Nelson Vergel was settling into Houston. An immigrant from Venezuela, Vergel told NBC News he left his home country because he was gay and seeking a more supportive environment. As an aspiring chemical engineer, he also wanted to attend a better school. When he met and fell in love with his boyfriend, Calvin, at a chemical engineering conference in Houston, Vergel decided to live there.
The “gay plague,” as it was referred to at the time, was rocking the nation. But it was thought to be confined to the coasts, to San Francisco, Los Angeles, and New York. Vergel was 24, a recent immigrant ready to try to make it in the U.S. with a new boyfriend on his arm and a promising career ahead of him. Then Calvin got tested behind his back.
“Back then, we weren’t keen to get tested, because there was nothing you could do, and the stress would just kill you faster,” Vergel said. “Calvin got tested without me knowing and told me he was positive. I got tested right away, and I found out.”
Amid the depression that followed his diagnosis, Vergel’s friends began to die. He "closeted" himself, he said, both at work and in the gay community. At work, he didn’t want anyone to know he was gay. At the gay clubs, he didn’t want anyone to know he was HIV positive.
He intended to come to the U.S. for a new life, but instead, he said it felt like he "came to this country to die."
Vergel decided to keep himself busy by channeling his anxiety into volunteer work. By day, he worked in the oil business. By night, he worked at an HIV clinic administering tests. He would visit hospitals, where he said HIV patients were covered in HAZMAT suits. He was surrounded by death, but the alternative, he said, was worse. He thought he would die of depression if he didn’t do something.
“I’ve never been in a war, and when they were dropping bombs in the city, I always wondered how people could sleep or live through that. But you just do,” he said. “That’s how I felt. I felt bombs were dropping and one might hit me eventually, but I just had to keep on going.”
"FURY, RAGE AND ACTION"
In 1987, a fiery speech was delivered at the Lesbian, Gay, Bisexual and Transgender Community Services Center in Manhattan. Gay playwright and activist Larry Kramer, who would go on to found the Gay Men’s Health Crisis (GMHC), had been slated to be a substitute speaker for writer and activist Susan Sontag. What he said on that day ignited a movement.
Kramer asked two-thirds of the room to stand up and told them they would be dead in five years.
“If my speech tonight doesn’t scare the shit out of you, we’re in real trouble,” he said. “If what you’re hearing doesn’t rouse you to anger, fury, rage, and action, gay men will have no future here on earth. How long does it take before you get angry and fight back?”
It was a call to arms, and Eric Sawyer, a young gay man from upstate New York, answered it. 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.
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 for medically appropriate housing, Sawyer said, was met within less than a month.
Among ACT UP’s targets were 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 the 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.” 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 long-term 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.”
Mark S. King Jonathan Timmes
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 antiretrovirals. Every gay man should be in 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.”
by John Paul Brammer
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