The revolutionary AIDS treatment Queer activists secured 30 years ago could save millions from COVID.
The AIDS Coalition To Unleash Power (ACT UP) was born in New York, out of rage Queer people felt seeing their friends and community wiped away by AIDS in the face of a completely indifferent government.
AIDS was first identified in 1981, but it wouldn’t be until 1985—a year that saw AIDS deaths rise by a stratospheric 89 percent—that then-President Ronald Reagan would say the word “AIDS” for the first time.
What’s the first thing you do in an emergency? You sound the alarm.
ACT UP grew to worldwide notoriety for its outrageous demonstrations, known as “zaps,” imploring Americans and their government to do something.
They chained themselves to the opening bell of the New York Stock Exchange and to the executive wings of pharmaceutical companies. They stormed the headquarters of the National Institutes of Health. They held “die-ins” at City Hall and Saint Patrick’s Cathedral.
By 1991, there were ACT UP chapters in 54 cities and 10 countries.
ACT UP was also enraged at pharmaceutical companies and government health entities, which seemed to only offer marginally effective drugs like suramin and AZT, whose side effects were almost as toxic as the virus itself.
ACT UP activists armed themselves with information.
These actors, waiters, students, musicians, artists, writers, etc. were mostly in their 20s. Realizing the government wasn’t going to intervene urgently in a virus that mostly killed Queer people, they began stealing textbooks, accessing NIH data, and distributing their findings.
ACT UP Splits.
It was ACT UP’s Treatment and Data committee (T&D) that performed most of this work, and soon the world’s top AIDS doctors and health officials were consulting the committee for advice on distribution and effectiveness.
With innovative AIDS drugs taking decades or more to hit market and swathes of people dropping dead, activists were growing frustrated with the FDA’s approval process, the National Institutes of Health, and with NIAID Director, Dr. Anthony Fauci.
T&D eventually proposed the idea of distributing drugs through a “parallel track.”
Gregg Gonsalves, a former ACT UP member, explained to Sarah Schulman of the ACT UP Oral History Project:
It’s that while you’re waiting for your drug to be approved while you’re still in later clinical studies, do parallel track. There are several hundred slots in a drug trial of ddI, so there are a lot more people with AIDS who need access to it, so why don’t you open up a parallel track. So, you have your clinical trials track, but here’s a parallel track, where you’ll give away the drug for free, and you can collect safety data on it.
This work got more effective AIDS drugs into the bodies of at least 30 thousand additional people before the drugs ever hit market while also allowing the FDA to monitor an entirely new pool of patients, speeding up approval. Gonsalves credits the political power of ACT UP and the effectiveness of T&D’s negotiations for the achievement.
But T&D’s growing ties to the medical establishment led to bitter infighting within ACT UP.
“I had the feeling that we were being positioned as, sort of, collaborationists,” Gonsalves said, “that people who went to negotiate with the government or talk to the government were somehow betraying an oppositional role, that ACT UP wanted to hold.”
Eventually T&D members split to form the Treatment Action Group, or TAG.
The next year, Health and Human Services Secretary Donna E. Shalala announced the development of a nationwide task force focused on the development of new AIDS drugs—an acknowledgement that the drugs marketed so far were woefully ineffective.
The task force would appoint multiple members of Treatment Action Group, including lifelong AIDS activist Peter Staley.
The tide turns.
That same year, pharmaceutical companies Hoffman-LaRoche and Merck were exploring a new class of medication called protease inhibitors.
Proteases are enzymes that facilitate the process of breaking down proteins in the body. While they’re helpful in digestion and healing wounds, they also allow for allow HIV to rapidly reproduce within the body.
Protease inhibitors combined with other antiretroviral therapies showed immense promise in stopping HIV in its tracks before an individual’s T-cell’s fell low enough to be defined as AIDS.
TAG member Mark Harrington, Gonsalves, and others soon began pushing for the accelerated research and approval of protease inhibitors, writing in a 1995 report for the National Task Force on AIDS Drug Development:
By articulating the significant problems we face in developing the protease inhibitors and then implementing a coordinated strategy towards addressing these problems, the Task Force could present an approach to drug development heretofore unseen, an approach that would place quality research and concern for public health above all other concerns. If the Task Force fails to take this opportunity today, then it has failed in its overall mission, has wasted precious resources and time, and most importantly, has lied to those of us so desperately looking for leadership in the fight against AIDS.
TAG developed a lengthy analysis of the problems regarding the inhibitors’ development, urging the Task Force to intervene and pressure the NIH to oversee accelerated development.
In his interview with Schulman, Harrington credited not only TAG, but ACT UP with a treatment revolution that had been decades in the making:
[T]hey put AIDS into the national consciousness and on the national agenda in a way that it hadn’t been put before. And, also, that didn’t go away. … I mean, the treatment revolution that happened in 1996, with protease inhibitors and combination therapy wouldn’t have happened that soon, if it wasn’t for those people. So, for every single one, that went to those demos – so, even if they’re not alive or they’re still alive, or they’re still activists or they’re not – I mean, they did save lives. That was one of their goals, and they did.
Protease Inhibitors would hit the market in the late 1990s and completely reverse the previous bleakness of the virus’ prognosis. Thanks to protease inhibitors, HIV is no longer a death sentence and it’s perfectly normal for people with HIV to live long and healthy lives.
Almost 30 years later, a new path out of COVID.
ACT UP’s and TAG’s efforts have influenced the fight against COVID-19 in numerous ways, particularly with early research into COVID-19 treatments that were facilitated by the groups’ success in the fight for accelerated approval.
And just yesterday, a new study from Pfizer of its oral antiviral COVID-19 treatment could once again be credited to the work of AIDS activists.
The “randomized, double-blind study of non-hospitalized adult patients with COVID-19, who are at high risk of progressing to severe illness” was 89 percent effective at reducing hospitalization or death from the virus in the company’s latest trial.
The study was called EPIC HR, or the Evaluation of Protease Inhibition for COVID-19 in High-Risk Patients.
That’s right. Once again, the protease inhibitors that AIDS activists played a vital role in helping develop and approve are likely to save millions of lives.
Former ACT UP member and TAG co-founder Peter Staley noted the historical symmetry on Twitter.
It’s a protease inhibitor plus ritonavir (used as a booster, the same combo HIV patients have used since around 1999). I’ll never forget Republicans like Jesse Helms complaining about taxpayer money being spent on AIDS research. Quite a few still do.
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For additional resources on ACT UP’s and the TAG’s revolutionary fight against the AIDS epidemic, Sarah Schulman and Peter Staley have both recently released new books.
Let the Record Show by Sarah Schulman
Never Silent by Peter Staley