It began on June 5, 1981, with information released from the Centers for Disease Control about five patients in Los Angeles.
On July 3, 1981, a small article by now-veteran New York Times medical reporter Lawrence Altman appeared about a little-known fungus and equally unknown cancer impacting “homosexuals.” (The appearance of this article was made famous in the film “Longtime Companion,” which dramatized how the word spread throughout the gay-male community as men told each other about the news story.)
The fungus was pneumocystis carinii pneumonia, the cancer was Kaposi’s sarcoma, the disease was gay-related immuno-deficiency syndrome — GRIDS — and as Altman reported, only 41 men were involved in New York City, Los Angeles and San Francisco.
Thirty years in, the numbers are staggering: According to the United Nations AIDS report for 2009 (the latest year with statistics), more than 60-million people have been infected worldwide, more than 25-million people have died and, in Sub-Saharan Africa alone, close to 15-million children have been orphaned by the epidemic.
THE BEGINNING
In 1983, I began covering AIDS full-time for PGN. Later, I would write about AIDS for The Inquirer, The Village Voice and The Advocate, then become an AIDS columnist for SPIN and an editor at POZ. The expansion of my coverage of the disease corresponded with the breadth of the epidemic: One day it was a small story about a few dozen men; a few years later, it was impacting millions worldwide.
But in the beginning, it was our epidemic and it was the queer community that brought attention to the disease, even as we were victimized by it. Without that activism, how many more would have died?
In 1983, when I began covering AIDS, it was less than two years since the disease had been designated by the CDC. By then, the name had already been changed to AIDS, because gay men were not the only victims. While the disease was then most prevalent among gay men, it had also been found in intravenous-drug users, bisexual men and women, babies born to women with the disease, hemophiliacs and people from Haiti and Africa.
By the end of 1983, 3,064 reportedly had the disease and of those, 1,292 had died. The big question for scientists was: How did people get the disease? What were the common threads that linked gay men to people in Haiti to hemophiliacs to babies? Was this disease controllable, or was the U.S. and the world on the verge of a pandemic?
Pandemic it became.
As a reporter for PGN, I had broken the news about transmission among women. I also wrote the first article about pediatric AIDS, reporting from the cribs of babies born to HIV-infected mothers at the Montefiore Hospital in the Bronx, where those infants had been abandoned by fearful mothers and left in the care of the state to languish and, soon, die. AIDS was already taking its toll on empathy as well as logic.
An epidemic had been born and no one was immune. The gay-male community was hardest hit and, as a consequence, AIDS became the first public-health crisis to be treated as a lifestyle choice, rather than a brutal and (at the time) fatal disease that was killing young men in their prime. Throughout the 1980s, the majority of deaths from AIDS were men in their 20s, 30s and 40s. The CDC estimated that one in 200 men was infected with the disease by the end of the 1980s.
Between 1983-84, the numbers had increased exponentially: More than 20,000 cases had been reported and, of those, more than a third had been fatal.
But by 1984, scientific breakthroughs in both the U.S. and France discovered the cause of the disease — a retro virus named HIV by its discoverers, Dr. Robert Gallo of the National Institutes of Health and Dr. Luc Montaigner of the Pasteur Institute in France.
With a cause, it was hoped, could come a treatment, a cure and, most importantly, prevention. In 1985, the ELISA (enzyme-linked immunosorbant assay) test was developed, which meant that people could be tested who were in the now-established high-risk categories: gay and bisexual men, IV-drug users, prostitutes, hemophiliacs and people from Haiti.
In the early to mid-1980s, America’s big cities became focal points for both the disease and a burgeoning activism to combat the concomitant AIDS-phobia and homophobia that raged as the disease spread outside the gay community. Politicians and even some scientists suggested the same kind of quarantines for those with AIDS as had been used for people with tuberculosis in the early 1900s. The CDC attempted to control the hysteria with clear-cut guidelines regarding transmission, because it was already apparent that, unlike TB, which could be spread by coughing and sneezing, HIV could only be spread by infection with bodily fluids, most notably blood and sexual secretions. But there hadn’t been a public-health fear of this magnitude since the TB pandemic. And fear overrode sense.
AIDS was tagged as a “lifestyle” disease early on, with babies, hemophiliacs and those who acquired the disease through transfusions considered “innocent” victims. Other people with AIDS — gay and bisexual men, prostitutes and IV-drug users — were all considered to have brought the disease on themselves. And regardless of transmission, AIDS was viewed by the general population as a gay disease, which just exacerbated homophobia.
“Thirty years ago we were living in a different world,” said Nurit Shein, executive director of Mazzoni Center. “When it first appeared, this disease was terrifying, mysterious and mercilessly quick. Our predecessors at PCHA [as Mazzoni Center was known at the time] were not only battling a public-health crisis but were further handicapped by a society that, by and large, refused to recognize gay men, who at that time were the primary victims.”
Men with visible signs of the disease, such as Kaposi’s lesions and wasting, were publicly reviled. Well-known people with the disease hid it even after their deaths. In Philadelphia, a City Councilman, a state legislator, an Inquirer reporter and a high-fashion model all died of the disease, but their obituaries listed “pneumonia” as the cause of death. Otherwise healthy people in their 20s and 30s did not die of pneumonia. They died of AIDS.
The gay community itself was not immune to this hysteria. The late gay journalist Randy Shilts, author of the definitive chronicle of the AIDS epidemic, “And the Band Played On,” became famous as the reporter who closed the San Francisco bathhouses. AIDS activists asserted that Shilts, who died of AIDS himself in 1994, had placed the blame for the spread of the epidemic on unsafe-sex practices in the bathhouses and other venues. But Shilts maintained he was just naming the truth: Unsafe sex was killing gay men.
The death of actor Rock Hudson opened the AIDS closet. When Hudson announced his diagnosis from a Paris hospital in February 1985, there was worldwide shock. Hudson hadn’t been the only personality with the disease, but he was the first to declare it. When Hudson died in October of that year, AIDS was officially out of the closet. Even then-President Ronald Reagan, a longtime friend of Hudson, was forced to actually say the word “AIDS,” which many AIDS activists had demanded he say outside the White House.
While the emotional furor over AIDS was ravaging the country and children like young hemophiliac Ryan White were being banned from classrooms, public pools and sports, the scientific community was desperately trying to find a cure for the disease or, at the very least, a means for prevention.
TURNING POINT
Prevention was what everyone wanted — and still wants. But 30 years in, no AIDS vaccine exists. I was one of many reporters who traveled all over the country throughout the early years of the AIDS epidemic reporting on this or that “new” and “promising” vaccine.
The most defining moment in the war against AIDS, however, came at a press conference in 1987, when Dr. Samuel Broder, director of the National Cancer Institute, announced a new drug had shown real possibilities in clinical trials — AZT.
After the press conference, Broder explained how he thought it would revolutionize AIDS care — it was the only drug that had shown promise in treating HIV.
Broder was right. Three decades and countless drug trials later, AZT remains the standard for treatment of HIV/AIDS worldwide. Prenatal treatment with AZT can stop transmission of HIV from mother to child in most cases and has, combined with other drugs, made HIV a disease most people can live with, as opposed to the death sentence it was in the 1980s.
While AZT was not and is not a cure for HIV/AIDS, it does slow the progression of the disease in a majority of people with HIV, which has, in combination with immunomodulators developed after AZT, virtually eliminated the progression into full-blown AIDS that was common in the 1980s and ’90s and resulted in so many deaths.
At the time, Broder noted that AZT had been developed as a cancer drug at NCI, and that NIH was one of the most vital parts of the U.S. government, specifically because it allowed scientists to address disease in a way that pharmaceutical companies could not and often would not. Broder noted then that NCI was “the only group at the NIH that actually had become a ‘pharmaceutical company’ working for the public in difficult areas where the private sector either could not or would not make a commitment.” Broder explained that NCI was investigating AZT and other agents for treating AIDS when no one else was doing the same work.
Broder also asserted, “AZT laid the foundation for almost every other product because the failure of AZT would have had very dramatic effects” on future drug research and, as a consequence, on the continuing escalation of the epidemic. From that first article to when the Food and Drug Administration approved AZT in October 1987, the number of deaths from AIDS had gone from dozens to thousands.
Those deaths brought gay men out of the closets and into the streets in a fury of outrage, grief and fear. How could gay men save themselves and each other? How many would have to die before President Reagan would respond to the AIDS crisis?
The AIDS Coalition to Unleash Power — ACT UP — was formed in 1987 as a response to what some activists were beginning to consider a genocide of gay men. Gay playwright Larry Kramer formed ACT UP with one query at a meeting in New York City: “Do we want to start a new organization devoted to political action?”
Several days later, a meeting of 200 gay men began the in-your-face activism that would target politicians, the FDA, scientists and public-health officials — as well as gay community leaders who Kramer and ACT UP felt weren’t doing enough to save lives, like Gay Men’s Health Crisis in New York.
The turbulence of the ’80s and early ’90s led, inevitably, to a certain complacency as the number of new cases began to level off as a consequence of both activism and the drug cocktails to combat the disease. By the mid-’90s, AIDS had been declared “over” by conservative gay journalist Andrew Sullivan in no less than The New York Times magazine and Larry Kramer posted his T-cell count in every issue of POZ magazine.
AIDS had become a disease primarily of people of color in the U.S. and of heterosexuals in developing countries, most notably throughout sub-Saharan Africa and the former Soviet bloc.
But as the century drew to a close, barebacking and “sharing the gift” became dangerous games among some gay men as people tired of safe sex and what some younger men considered the pontificating of those who survived the first wave of the epidemic, like Kramer. Many AIDS workers cite the prevalence of crystal meth parties as a gateway to new cases.
NOW
As Greg Herren of New Orleans’ NO/AIDS agency, who does testing in the city’s gay hot spots and party circuit, told PGN, “Thirty years in, I am amazed at the misinformation that’s still out there, and equally stunned that no one’s come up with an effective way to counteract the power of the sex drive and the mentality of, ‘I don’t have a condom, but just this once won’t hurt.’”
Thirty years in, AIDS could have been nothing but a bad memory. It isn’t. AIDS is pandemic throughout Africa and Asia for all the reasons it became pandemic within the gay community in the ’80s. Just last week, African AIDS activists accused the U.S. of dragging its feet in providing AIDS drugs for the poverty stricken worldwide, because AIDS is now more of a business in the West than anything else. The AIDS cocktail of drugs is expensive and, with so many people living with AIDS worldwide, provides regular revenue for pharmaceutical companies and stockholders.
But the peril of AIDS as a lethal disease is not gone. According to the CDC, new cases of HIV are once again on the rise among gay and bisexual men and heterosexual women between ages 15-35. AIDS also remains the leading cause of death among African-American men between ages 15-40 and among all women 35 and under. More alarming still, for a generation of people who survived the first epidemic, new HIV infections are on the rise among people 50 and over — a storyline addressing just this reality had been playing out on ABC’s drama “Brothers & Sisters,” as a gay male member of the familial clan portrayed in the show deals with discovering his HIV-positive status in his 60s. (The show is now cancelled.)
Mazzoni Center’s Shein also noted the evolution of the epidemic, now a global pandemic. “While the history of HIV/AIDS is inexorably tied to our community, today it is viewed as a global health crisis, and the ongoing work of prevention and treatment has brought us into partnership with people from all areas and all walks of life,” she said. “So much more is known about the disease, how to prevent it, how to treat it, and how to live with it. Today the major battles are less about the disease itself and more about providing access to care and treatment.”
Longtime AIDS activist and CEO of GMHC, Marjorie Hill said recently, “In my early days as a board member [at GMHC] and earlier, there was a great deal of concern, worry and angst about HIV that has settled into this kind of benign complacency.”
STILL FIGHTING
And yet, with AIDS still a leading killer in the U.S., how can we afford complacency?
Journalists are supposed to keep themselves out of the story, but AIDS was my beat for years — at PGN, The Advocate, SPIN and POZ. And having watched the dying over decades, it’s impossible to remain impartial. Some memories are too vivid: the poor blacks in tiny Belle Glade, Fla., who were dealing with a monumental outbreak of AIDS that was killing them all off. The babies at Montefiore with their too-big eyes and their weak smiles and violent cries. The people with AIDS at a housing project in Philadelphia whose Kaposi’s lesions were aggravated by the bites of roaches and mice that had overrun their house. The homeless gay man living in the Broad Street subway who I interviewed every day for a week and fed every day for a month until he just disappeared — but whom I have never forgotten. Cleve Jones, who led me into a little back room in San Francisco where the first panels of the AIDS quilt were being made at the Names Project and I burst into tears, all objectivity gone, as I looked at them and saw all those lives with nothing left but a patch of cloth to mark their passing.
Thirty years and the dying has seemed to have all but stopped here in America. But in Africa and Asia it rages on. In South Africa, men rape baby girls because they have been told it will cure their disease. In Bangkok and Mumbai, girls as young as 5 are sold in brothels as “AIDS-free.” In Zimbabwe the president insists AIDS doesn’t exist.
AIDS is not over. And 30 years in, we risk catastrophe if we think we can afford nights without safe sex and days without clean needles and life without passing on the torches of education and activism.
Those of us who were on the front lines know what happened. Some of us are fortunate enough to be alive to be the purveyors of a cautionary tale: Those who forget history are condemned to repeat it. AIDS was our epidemic. We must do everything we can to be sure it never becomes our epidemic again.