The Media and AIDS

The history of AIDS and the media is a story of two very different kinds of journalism happening simultaneously — and the gap between them measured in lives.

In the mainstream press, AIDS was largely invisible for the first two years, framed as a "gay disease" for several more, and covered with the kind of clinical distance that rendered the dying people at the center of the story as abstract statistics. Editors wouldn't assign the stories. Reporters who wanted to cover it were told no. The nation's paper of record buried the first report on page 20.

Meanwhile, in San Francisco, a small weekly gay newspaper was doing something the New York Times was not: bearing witness. Publishing the names and faces of the dead, week after week, for seventeen years, until the day there were no names to publish — and that silence was front-page news.

The full story of AIDS and the media is a story about power, about whose deaths count, about who gets to tell the story of a community, and about the community media that emerged — and survives today — because the mainstream press couldn't be trusted to do the job.

When the CDC published its first report on the mysterious illness on June 5, 1981, the mainstream American media barely noticed. The New York Times ran a brief item — 245 words — buried on page 20. The Washington Post didn't cover it at all. Television was silent.

This was not an accident. It was a reflection of who the dying were and who the editors were. The early AIDS cases were concentrated among gay men, injection drug users, Haitian immigrants, and hemophiliacs — populations that the mainstream press had long treated as marginal or invisible. The epidemic was happening to people whose deaths were not considered newsworthy enough for front pages.

The institutional homophobia of American newsrooms in 1981 was not subtle. Reporters who were gay were largely closeted. Editors who were straight often had no context for understanding the gay community or its losses. And there was a broader cultural assumption — echoed in the government's silence — that this was a niche problem for a niche population and did not require the resources of major newsrooms.

Randy Shilts, who later became the most important AIDS journalist in America, described arriving at the San Francisco Chronicle in 1981 and being told his editors "were not to give him gay stories to cover." That instruction lasted about two weeks before his editors recognized what was happening and changed course. Most newsrooms took years longer — if they changed at all.

The New York Times is the most influential newspaper in the United States. Its front page sets the national news agenda. What it chooses to cover — and how prominently — signals to every other outlet what matters.

For the first two years of the AIDS epidemic, the Times largely signaled that AIDS did not matter. The first report — those 245 words on page 20 — referred to the illness as a "rare cancer" affecting homosexuals and noted there was "no evidence of contagion," framing that would prove both medically imprecise and editorially consequential. If the Times wasn't alarmed, why should anyone else be?

The paper did not put AIDS on its front page until 1983 — two years and thousands of deaths into the epidemic. By then, more than 2,000 Americans had already died. Reporter Lawrence Altman, the Times' medical correspondent, had been trying to get more coverage. His editors were resistant. The institutional calculation — whether conscious or not — was that this was not a story for the general readership.

The Times' failure on AIDS became one of the most studied examples of institutional media bias in journalism history. A 1989 study in the Columbia Journalism Review found that the Times had published more stories on the single outbreak of Tylenol tampering in 1982 than on AIDS in the entire first two years of the epidemic. Seven people died in the Tylenol case. More than 850 Americans died of AIDS-related illness in the same period.

National television was even slower than print. The three major networks — NBC, ABC, CBS — were largely silent on AIDS through all of 1981, the year the epidemic began.

NBC Nightly News aired the first national television report on AIDS in June 1982 — a full year after the CDC's first report. Anchor Tom Brokaw introduced the segment by reporting that "a new study" found that "the lifestyles of some male homosexuals has triggered an epidemic of a rare form of cancer." Correspondent Robert Bazell reported that "the best guess is some infectious agent is causing it." The framing — a gay lifestyle story, a curiosity — set the template for how television would cover AIDS for years.

The word "homosexual" appeared in nearly every AIDS report through the mid-1980s, regardless of whether the person being discussed identified as gay. The framing reinforced the "gay disease" narrative that was simultaneously coming from the Reagan administration and much of the print media — and that would prove extraordinarily damaging in preventing the public from understanding that anyone could be at risk.

While the New York Times buried AIDS on page 20 and national television waited a year to notice, a small weekly gay newspaper in San Francisco was doing something different. The Bay Area Reporter — the B.A.R. — had been publishing since 1971, covering the San Francisco LGBTQ community as its paper of record. When the epidemic arrived, the B.A.R. made a choice that the mainstream press did not: it would publish the names.

What started in late 1981 with a handful of obituaries linking the deaths of community members to Kaposi's Sarcoma quickly became, on average, twelve AIDS-related obituaries a week. At its peak, some issues ran as many as 31 AIDS obituaries in a single edition. The paper hired a full-time position dedicated solely to editing the obituary section. Week after week, for seventeen years, readers opened the B.A.R. and turned to the obits first — scanning for familiar faces. Friends. Former lovers. The man from the gym who hadn't been around lately.

The GLBT Historical Society later compiled a searchable database of the more than 10,000 obituaries and death notices that appeared in the B.A.R. between 1981 and 1998. Those 10,000 entries are not a statistic. They are a community's accounting of itself during the worst years of its history.

The failure of mainstream media to serve people living with HIV created a need that the community filled itself. The publications and platforms that emerged from that gap are still serving people today — and in many cases are still the most trusted sources of HIV information for people who need it most.

These were not hobby projects. They were survival infrastructure. Founded by people living with HIV, staffed largely by people living with HIV, written for people living with HIV — in a media environment that was still framing AIDS as a tragedy happening to someone else, these outlets insisted that people with HIV were not victims to be pitied but people with agency, information needs, and the right to speak for themselves.

The media history of AIDS is not simply a story of institutional failure followed by gradual improvement. It is a story of a community building its own information infrastructure because it had to — and that infrastructure proving more durable, more trusted, and more genuinely useful than anything the mainstream press produced.

POZ, in survey after survey, was trusted more by people living with HIV than any other information source — including their own doctors. TheBody built a resource library that has been accessed by millions of people over three decades. Positively Aware's annual drug guide has helped people navigate treatment decisions that are genuinely complex. The B.A.R. published the names of the dead when no one else would, and when the dying slowed, it published that silence too.

Randy Shilts died covering the story. The B.A.R. had a full-time obituary editor. POZ's founder sold his insurance policies to keep the lights on when he was too sick to get out of bed. This is what it looks like when community builds its own media because the alternative is invisibility.

The mainstream media eventually caught up — partially, unevenly, with many blind spots remaining. HIV coverage today in the New York Times, NPR, and major broadcast outlets is measurably better than it was in 1981. But the community publications remain essential, because the mainstream press still treats HIV as a story that happens to someone else, in another country, among populations it has not learned to see as its own readership.

The lesson of the B.A.R., of POZ, of TheBody, of Positively Aware, is the same lesson as ACT UP and GMHC and the Blood Sisters: when institutions fail, communities build what they need. And sometimes what they build is better than what the institutions would have made anyway.