Living with AIDS.
When I became the first female journalist writing about HIV/AIDS 35 years ago, that phrase was unimaginable.
Now, on World AIDS Day 2018, the disease that once decimated my generation of gay men has become, for most in the West, a chronic illness.
Yet in 2018, AIDS is not over. AIDS still takes an extraordinary number of lives and remains a threat across sexual identities, races and genders. As we mark World AIDS Day 2018, we must remember the long, terrible history of the disease in America. We must ensure we do not replicate what happened in the ’80s and ’90s. We must continue to sound the alarm of precaution so that we never lose another generation to a preventable disease that attacks indiscriminately, but with deadly force.
When I began writing about HIV/AIDS, little was known about the disease. It was the early years of discovery. And in that time, AIDS was a death sentence that took the lives of close friends, acquaintances and colleagues as well as the rich and famous. Among the latter, men in their ’40s and ’50s who were prominent in a plethora of fields from politics to the arts were dying. Their obituaries listed pneumonia or cancer as the cause of death, but from the front lines of reporting on the epidemic, we learned to read the code: a Philadelphia City councilman; a well-known Philadelphia journalist; a news anchor, a restaurateur.
The door of the gay closet was still tightly closed, but the door to the AIDS closet was bolted.
These were the years of media referencing “innocent victims” of AIDS — the hemophiliacs and babies and those who got AIDS from transfusions, while villainous descriptions of gay men as predatory purveyors of a fatal disease many saw as one they “chose,” were rampant.
As a woman writing about a disease that overwhelmingly took the lives of men, I had access that others did not. Doctors and scientists confided in me, a member of the least-impacted demographic. People with AIDS wanted me to tell their stories.
The line between journalistic distance and full-blown activism had never been so blurred. I would report on events that I had participated in — a die-in in Boston while covering an AIDS conference. I was arrested outside the White House because police ignored my press pass as, wearing the protective blue gloves to ensure no person with AIDS touched their flesh, they herded everyone into vans.
I was a member of ACT UP and Queer Nation. I’d laid down in the streets of Philadelphia, Boston, New York City, Miami, Los Angeles and San Francisco in civil-disobedience actions. As a journalist, I covered the disease that had killed two of my closest gay male friends and wiped out a whole generation of black gay writers I knew and loved.
In the ’80s and ’90s, there were names who created headlines about AIDS, and they were among my interviewees: two U.S. Surgeons General; Dr. Mathilde Krim, founder of AmFar; Ryan White, a young hemophiliac who had contracted AIDS through transfusions; and every American doctor and scientist in the forefront of AIDS science. I wrote a book about Rock Hudson, the first celebrity known to have AIDS.
My AIDS writing appeared in the Village Voice, the Philadelphia Inquirer, The Advocate, OutWeek and this newspaper, among many others. I was the AIDS columnist for SPIN magazine in the days when that was needed, as well as a reporter and editor at POZ.
In 2018, there are perky ads for Truvada for PrEP with cute gay men, black women of indeterminate sexual orientation and beautiful trans women. But in the 1980s, when I covered the press conference by Dr. Sam Broder, director of the National Cancer Institute, announcing the development AZT, the first treatment for AIDS, it was a monumental moment in the history of the epidemic.
Still, in the 1980s and ’90s, the deaths came fast and furious. The Bay Area Reporter, the San Francisco gay weekly, published hundreds of obituaries. The front page of the Aug. 13, 1998 issue of the newspaper was so historic that it was reported on by other mainstream newspapers throughout California. It read: “No obituaries were filed with the paper for this issue, a first since the AIDS epidemic exploded in San Francisco’s gay community.”
The author of the article, Timothy Rodrigues, wrote, “After more than 17 years of struggle and death, and some weeks with as many as 31 obituaries printed in the B.A.R., it seems a new reality may be taking hold, and the community may be on the verge of a new era of the epidemic. Perhaps.”
Those days did come. And now, 35 years since AZT, 20 years since that issue of no obits, we mark World AIDS Day in the United States with solemnity, but not with the activism and rage that we were living when I was a very young reporter watching people my own age, men who should be living today, dying.
It was a time of urgency and fear. The ostracization of people with AIDS was a concomitant horror to the disease itself. Families shut their doors on their children, siblings and parents with the disease. Friends distanced themselves, fearful of transmission, even as we had learned it was only transmitted through bodily fluids.
The fear was irrational. But with so many dying, it was almost understandable.
My dentist refused to treat people with AIDS, as did many doctors. There was endless talk from politicians of quarantines. The Red Cross banned blood donations from gay and bisexual men — a ban which has yet to be lifted. At every gay event, baskets of condoms were evident like party favors.
For a long time, we looked for other sources of the disease. One New York gay publication indicted swine flu. Then hepatitis B. They were the first phalanx of anti-vaxxers, blaming AIDS on vaccines instead of HIV.
There were alternative theories of AIDS from people like Dr. Peter Duesberg, who led the HIV-denialism movement and cost countless lives in the process.
I traveled to a tiny city in Florida, Belle Glade, which had the highest occurrence of AIDS in the country among its mostly heterosexual, mostly black population. The Belle Glade story led some to believe that AIDS was transmitted by mosquito.
That was how the search for answers went in those years. The first news story was July 3, 1981 in The New York Times, headlined: “Rare Cancer Seen In 41 Homosexuals.” By 1985, there were 100,000 cases. The story of how we got from 41 cases of men with Kaposi’s sarcoma to 35.4 million people worldwide having died from the disease as of 2017 is the story of our own very personal epidemic.
There are 36.9 million people living with HIV, as noted by the World Health Organization and UNAIDS, which reported that 21.7 million are receiving anti-retroviral therapy as of 2017.
In the ’80s and ’90s, we were in a constant state of emergency. Every day felt like a war against time and microbes and we never knew who would be taken next. I sat at the bedsides of so many friends — noted Philadelphia writers Joe Beam and Essex Hemphill among them. I held the hands of men in hospice whose stories I was writing, men who were covered in Kaposi’s lesions. I held AIDS babies in Montefiore Hospital in the Bronx, babies whose mothers had abandoned them at birth, knowing they couldn’t care for them and hoping someone else would. I talked to HIV+ teens and juvenile prostitutes who were living on the streets, at risk through the only work they could find. A few years ago, I wrote a series for PGN on homeless LGBT teens and three of the teens I interviewed were HIV-positive.
AIDS reporting hasn’t been a journalistic beat for 20 years. But HIV/AIDS still stalks millions, including in the U.S. and in Philadelphia, where the rate of new cases remains higher than the national average.
The CDC reports that young men of color of all sexual orientations have the highest incidence of new HIV cases. And among LGBTQ people, trans women appear to be most at risk, with a much higher rate of new cases.
These facts mean the epidemic is far from over for our community. And the most vulnerable members of that community, like young trans women of color, are at greatest risk.
In the 1980s and ’90s, the focus was on white gay men, while within communities of color, people were dying at alarming and under-reported rates.
Our fight going forward is to focus on the communities that continue to be under-served and where HIV/AIDS remains a constant threat. No black or Latinx gay or trans teen should be at risk for AIDS in 2018.
As we commemorate World AIDS Day, it’s essential we not lose track of our history because, as we know all too well, it repeats itself. The AIDS epidemic we witnessed decades ago killed a generation. We cannot allow that to ever happen again. UNAIDS cites 9.4 million with HIV who do not know their status.
That is a signal: We must protect a new generation from what my generation faced, and with the same urgency.