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The grit of AIDS activists may have saved lives in more than one global health crisis

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Aids Research Hysteria
Aids Research Hysteria

Paul Feldman says he's had HIV since before they knew it was HIV.

Before his AIDS activism in Seattle, Feldman's blood was examined in early research, in 1981. The virus now known as HIV would not be isolated and identified by researchers until 1983, and its relationship to AIDS would not be announced for another year after that.

Feldman was similarly early to the second major health crisis in his lifetime: the ongoing COVID-19 pandemic.

He didn't wait for Gov. Jay Inslee to issue the shutdown order in late March. Shortly after the first COVID-19 deaths at the Kirkland Life Care Center, his down-the-hall apartment neighbor contracted the virus and died. He too was an AIDS activist.

Feldman says he made a few "strategic purchases" and then hunkered down in his apartment.

"No, no, no," Feldman thought, having been deeply impacted by his neighbor's death. "I can't live with AIDS for decades and then die of COVID. Just, no."

Feldman took his health so seriously throughout the pandemic that he only recently stopped ordering groceries for pickup after being vaccinated.

"I am not letting two Republican presidents — both fucks — try to kill me," Feldman said of Ronald Regan and Donald Trump. "One was enough, thank you very much."

How AIDS activism then has helped us today

Professor Lynn Thomas at the UW Department of History has adapted her History of HIV/AIDS course to incorporate the current pandemic. According to Thomas, the history of AIDS has "absolutely shaped" how the COVID-19 pandemic has unfolded. The big takeaway from the class: COVID-19 was handled so much faster than HIV/AIDS because of what we learned from the earlier crisis, Thomas says.

So the grit of AIDS activists may have saved lives during more than one global health crisis.

"Without AIDS activism, we wouldn't have any vaccines in us," Thomas said, her words a near echo of ACT UP's signature slogan: "drugs in bodies."

In addition, Thomas says that HIV/AIDS and the activism that gave it relevance to governing bodies led to a huge investment in global health.

And, according to Dr. Peter Shalit who specializes in LGBTQ healthcare and HIV care and prevention at his Seattle private practice, HIV research advanced the field of virology.

Both of these developments came in handy when the COVID-19 virus shut down the globe.

Presidents then and now

In 1981, President Ronald Reagan's press secretary Larry Speakes joked with a journalist who called the virus the "gay plague," earning laughs from the press pool. President Trump infamously referred to COVID-19 as the "kung flu" and other names that played into the association between China and the virus.

"Though Trump didn't take it seriously, I would say the public health people took it very seriously," Thomas said. "There were botched things, but overall I think it's fair to say that the whole federal government responded much quicker to COVID-19 than HIV/AIDS."

Reagan first publicly mentioned AIDS in September 1985. By the end of that year, there were over 15,000 reported cases of AIDS and over 12,000 deaths in the US, according to the New York City AIDS Memorial.

Though criticized for being dismissive, Trump spoke about COVID-19 two days after the first case was confirmed in Washington state.

"When AIDS happened in the '80s, it happened to people who were in stigmatized groups: gay people, injection drug users, and Haitian immigrants," Shalit said. "The government wasn't particularly concerned about them. It took a lot of activism to get people to care."

Healthcare then and now

Shalit began medical school in 1981, so his training ran alongside the AIDS epidemic. Treating patients with HIV/AIDS in the '80s was not venerated work, like treating COVID-19 patients today. According to Shalit, many providers refused to work with patients with HIV/AIDS. Some funeral homes even refused the bodies of those with AIDS. Shalit says his work was "out of the mainstream."

COVID-19 was first identified in the United States on January 21, 2020. The CDC reports now that 2.8 million people in the US received their first dose of a vaccine by the end of the same year.

But AIDS activists had to seize control of the Food and Drug Administration headquarters to demand "drugs in bodies" in 1988, five years after HIV was first identified by researchers. It would take the agency another year to propose a "parallel track" program that gave patients access to drugs before they were approved.

Anthony Radovich (he would probably let you call him Tony) calls this lack of urgency "American fuckery."

After that, the FDA created an emergency-use authorization procedure to help intervene more quickly in the case of a crisis.

All three of the available COVID vaccines have been authorized through this procedure.

Activism and treatment

According to Radovich, activism took many forms during the early days of the AIDS crisis. Though he was scheduled to work during many ACT UP actions — such as stopping traffic at rush hour at Boren and Madison — Radovich was a part of the effort to care for HIV/AIDS patients in Seattle in the early '90s, when the only available treatment was an antiretroviral medication known as AZT.

"There was no treatment," Radovich said. "It was all about quality of life."

For three years, Radovich staffed the thrift storefront of Capitol Hill's own "buyers' club," a hub for non-FDA-approved drugs. While he rang up secondhand clothing in the front of the store, patients would try shark cartilage, ozone therapy, and high doses of vitamin C in the back, Radovich says.

Though these therapies were experimental, Radovich says the participants were not afraid of getting hurt.

"We were already hurt," he said.

Feldman, who refused AZT, believes a "massive amount" of vitamin C helped relieve an HIV- related complication.

Experience in the AIDS pandemic pays off

Feldman admits being scared watching President Trump's handling of the COVID-19 pandemic early on in the crisis. On a "lizard brain" level, it felt similar to the uncertainty of the HIV/AIDS epidemic, he said.

During the summer of 2020, just as Moderna and Pfizer/BioNTech entered the third phase of their coronavirus vaccine trials, Trump controversially advocated for the use of an antimalarial drug, hydroxychloroquine.

"Then I saw Tony Fauci and I was like, 'Of course he's here, of course he's here," Feldman said, referring to press conference appearances by the director of the US National Institute of Allergy and Infectious Diseases, Dr. Anthony Fauci. "He's the guy who listened to us, changed the way they did business."

According to Thomas, many current leaders in global health gained their experience through the HIV/AIDS crisis, including Fauci. The HIV/AIDS-induced investment in global health was led in part by the Bill & Melinda Gates Foundation, which founded the Institute for Health Metrics and Evaluation (IHME) at the UW. This entity now provides COVID-19 projections.

As social-distancing protocols ease along with rising vaccination levels in the United States, the IHME predicts a decrease in COVID-19 deaths — and even fewer if we continue to wear masks.

Different viruses, different vaccine outcomes

As of May 14, 2021, 71% of King County residents have received their first dose of the vaccine. But after 40 years of HIV/AIDS, there is still no vaccine. According to Shalit, "It's not because people don't care; it's because of the biology of the viruses."

Having worked HIV/AIDS healthcare since the '90s, he is unsure if a vaccine for HIV is possible. "COVID is a temporary infection that enters the body, does its job, and leaves," Shalit said. "HIV is a permanent infection that actually becomes a part of that person's cells."

He says the virology of COVID-19 (which allowed for a quick-turnaround vaccine) and HIV (an incredibly "smart" virus) are "apples and oranges."

Radovich calls PrEP, a highly effective drug for preventing HIV, something of a vaccine — though he acknowledges his "science friends" would correct him on his imperfect analogy.

Unequal effects

Much like the distribution of the COVID-19 vaccine, treatment for HIV/AIDS is most easily accessible in wealthy countries like the United States. Thirty-four million people are HIV positive worldwide, but 69% live in sub-Saharan Africa.

"Whatever country HIV/AIDS hit, it always exposed the fault lines and inequalities," Thomas said. "That's also the case for COVID-19. The communities that have been hardest hit by COVID have been communities of color, the working class, and frontline workers."

"Back to normal"

As the CDC loosens mask guidelines for individuals vaccinated for COVID-19, the United States begins to feel more and more "normal."

However, Feldman recalls a different "back to normal," that for HIV/AIDS survivors in the United States.

Combination antiretroviral therapy (ART), also known as "the AIDS cocktail," became available in 1995, two years before Feldman became sick with AIDS. Within three weeks of the diagnosis, he was taking ART, and within four weeks, he was out swing-dancing again, Feldman says.

"When people started taking the drugs, their lives came back, and their weight came back, and their color came back," he said.

As an activist, watching the second major health crisis of his life unfold, and in his words, seeing the same doctors work to save his life again, Feldman says he "is proud [to have] helped set the stage so that scientists could move fast with this vaccine."