For many people in the U.S., the second weekend of March 2020 was when the COVID-19 era of U.S. history began for them. On that Friday—the 13th, no less—Trump declared a national emergency, and that Sunday, the Centers for Disease Control and Prevention (CDC) advised against gatherings of more than 50 people. With the beginnings of social distancing in place, it became impossible to distance oneself from the unfolding pandemic.
Of course, the story of the novel coronavirus in the U.S. began months earlier. The latest research indicates that COVID-19 was circulating in counties near Seattle as early as late December, and a woman in San Jose died with the virus on February 6. Before the virus even had a name, the World Health Organization declared a global health emergency, which the Trump administration largely ignored, with the exception of restricting some travel from China. Meanwhile, Sen. Richard Burr and other U.S. politicians were selling stocks in early February, hoping to avoid market drops due to the pandemic.
As someone who has been writing, organizing, and educating about the AIDS epidemic for the past 20 years, with a specific focus on the virus before 1981, I have come to see the importance of a crisis’ early history. By looking back, we can often see a template for how the story unfolds by seeing how it began.
This July will mark 39 years since the now-infamous July 3, 1981 headline from The New York Times appeared, which for many signaled the arrival of HIV/AIDS in their lives. The headline reads, “Rare Cancer Seen in 41 Homosexuals: Outbreak Occurs Among Men in New York and California.”
In recent years, I have seen an increase in the amount of people posting the headline on Facebook and Twitter on the anniversary of its first appearance, often with a small remembrance of where they were when they read it, or a call to take action regarding the ongoing epidemic. It is heartwarming. But it is also frustrating, and in terms of galvanizing action in the present, is arguably counter-productive.
How the Times Piece Missed Many Clues of the Early HIV Crisis
The article, which can be seen in archived form online, is an important document to history to be sure, but it is only part of the story, and it is not even when the story begins. When people post it as a watershed moment, they intentionally or not are doubling down on a kind of erasure—the incorrect suggestion in the piece that what came to be known as the HIV virus posed no threat to people other than cisgender homosexual men and some cisgender women. Black people were not mentioned, nor were intravenous drug users, people of color, and certainly not transgender and gender non-conforming people—all of whom were impacted by HIV then, as now.
Posting the article, I feel, not only starts the clock on the crisis too late, it also perpetuates the exclusion from the public imagination of communities of people who are not white, gay, cisgender men who are impacted by the virus now. This flattening of history, of course, is easily fixed, if one pulls back the proverbial camera to see nascent AIDS history that existed before The New York Times headline and then follows that thread to the present.
For example, In 1981, after seeing a man with unexplained fevers, dramatic weight loss, and a severely damaged immune system, a then-33-year-old assistant professor specializing in immunology at the University of California Los Angeles (UCLA), Michael S. Gottlieb, M.D., began a process of reasoning that led him to conclude that that this patient was suffering from some syndrome that had not previously been reported. After some testing, he figured out that among the patient’s many ailments was Pneumocystis pneumonia (PCP). Soon thereafter, Gottlieb heard about two patients with chronic fevers, swollen lymph nodes, diarrhea, and thrush who also had PCP. They also both had cytomegalovirus (CMV). The autopsy of a fourth patient revealed that he, too, had CMV, which was found in his lungs. A fifth, also-deceased patient, was similarly found to have had PCP.
With this information, Gottlieb contacted the New England Journal of Medicine about publishing a piece about what he understood to be a significant discovery. It was suggested that while he did the work of submitting a paper to the journal, he should first write a brief article for the CDC Morbidity and Mortality Weekly Report (MMWR), alerting public health officials and physicians to the new illness.
People within the medical profession took notice of the MMWR article, and soon, so did the media. A little over a month after it was released came the New York Times piece. Written by Lawrence K. Altman, it appeared on page A20 in the paper and is often credited as the first newspaper account of what would come to be known as AIDS. But, in fact, months earlier, even before Gottlieb’s MMWR article, Lawrence D. Mass, M.D., was looking into what he was hearing about “a gay cancer.”
His attempts to have the story confirmed were unsuccessful, though. He ended up publishing a piece in the May 18, 1981 edition of the New York Native, titled, “Disease Rumors Largely Unfounded.” In it, Mass reports that the New York City Department of Health’s Dr. Steve Phillips had explained that the rumors were “for the most part unfounded.” A month later, Mass’ first instinct for the story would be proven correct; there was indeed an illness circulating.
Underscoring much of the reporting at the time was the real and perceived homosexuality of the early patients. Unmentioned was a more nuanced understanding of sexuality or race. The first five patients Gottlieb mentioned were all white and gay. But the next two patients were Black, including one straight Black man from Haiti. Additionally, in Mass’ New York Native article, he wrote, “Regarding the inference that a slew of recent victims have been gay men. … Of the eleven cases … only five or six have been gay.” In December of that year, Arye Rubinstein, M.D., from the Albert Einstein College of Medicine in the Bronx, New York, treated five Black infants showing signs of severe immune deficiency, similar to those being reported in gay men. His diagnoses were largely dismissed by his colleagues.
The impact of the near-pathological focusing on gay men when it comes to the virus had implications beyond the scope of representation. Before 1993, there was no official U.S. government definition of AIDS that included many of the people most impacted by the epidemic. In fact, in 1987, the CDC published an almost criminally limited definition.
Remembering Katrina Haslip’s Role in Changing AIDS Case Definition, and History Itself
This all changed, though, after years of activism led by Black women, incarcerated women, and others. Foundational to the expanded definition was Katrina Haslip. She was an activist and “jailhouse lawyer” who had been empowering other women living with HIV in Bedford Hills prison in New York State. She also inspired activists on the outside, including lawyer Terry McGovern, who worked with Haslip and others to sue the U.S. Social Security Administration for violating their responsibility to fairly define “disability” by using a definition based only on one portion of impacted people. While at Bedford Hills, Haslip cofounded ACE (AIDS Counseling and Education program), and then, after her 1990 release, ACE-OUT. Haslip died in Manhattan’s Roosevelt Hospital in December 1992, mere weeks before the definition changed.
On Jan. 1, 1993, thanks in part to her activism and the activism of others, the CDC expanded their definition of AIDS to now include all people living with HIV with less than 200 CD4 T cells, pulmonary tuberculosis, recurrent pneumonia, or invasive cervical cancer. Most impacted by the expanded definition were people whose HIV-related illnesses had not previously been acknowledged: women, people who inject drugs, poor people, people of color, and anyone existing at the intersections of these ways of being alive. Before the expansion, people living with AIDS who did not meet the CDC’s definition could not receive the treatment and resources that came with a diagnosis, resulting in needless suffering. People had their children taken away, illnesses were left untreated, resources were not available to families after death, and the likelihood of premature death was intensified.
The effect of the expanded definition was felt in people’s lives—and in statistics. From 1992 to 1993, reported AIDS cases in the U.S. more than doubled, from 47,572 to 106,949. This meant, because of the work of Haslip, McGovern, and others, including the National ACT UP Women's Committee, The NY ACT UP CDC Committee, more people with AIDS were recognized and had access to life-improving treatment and resources. This happened amid a year of advancements in representation—with Philadelphia, often referred to as the first major motion picture about AIDS, being released, and Angels in America winning both a Tony and Pulitzer—and intense losses and obstacles.
In 1993, Rudolf Nureyev and Arthur Ashe died with the virus, and Congress voted to retain the ban on entry into the country for people living with HIV. While Tom Hanks’ emotional Oscar speech is often prominent within AIDS timelines, the shift in the AIDS definition and the role that activists played in the expansion is rarely mentioned. “I’m at presentations all the time,” McGovern shared in her ACT UP Oral History Project interview. “I see AIDS timelines. And it’s never there. ... No mention of it. ... Isn’t that interesting?”
One hopes that given the power of the Black Lives Matter activism resurgence, race will not get lost within the historical reckonings of COVID-19. But as the story of AIDS reveals, one can never be too sure. It is no coincidence that among the most neglected in the history books are also the most burdened by HIV in the present. Of the reported 1.1 million people in the U.S. currently living with HIV, the most impacted are Black, Latinx, and white gay and queer people, as well as Black heterosexual women. They are also the same people who for too long went uncounted and uncared for by the medical and political establishment. To honor the activism that worked to right those wrongs, and to do good work in the present, we need to be fighting for diversity, inclusion, and justice—not only in the present, but also in how we tell our history.
What would it mean to the future of the AIDS epidemic if every July 3, instead of posting The New York Times headline on social media, people took the opportunity to share educational memes about Katrina Haslip’s story? What would it mean for The New York Times to atone for the narrowness of their previous AIDS coverage by allocating resources now to Black and people of color journalists to share the stories of people impacted by both HIV and COVID-19? I like to think that when McGovern says, “interesting,” she is inviting us to consider previous wrongs as opportunities to do right in the present. So, let’s see what we can do to make next July 3 a little more interesting.