“Drugs into Bodies”: Reflecting on the legacy of HIV/AIDS activism

PUBHLTH 405
Social History of Infectious Disease
University of Michigan School of Public Health

Jon Zelner
[email protected]
epibayes.io

How I spent my Thanksgiving

Too cold out…time to make AI squirrels

…also football squirrels.

Coming in for a landing 🛬

We all have that December feeling…but I want to make the most of our last 3 classes!

Agenda

  • A little more background on ACT-UP and AIDS activism of the late 1980s (~15m)

  • Reading the original ‘Patient Zero’ analysis like it’s 1984 (~20m)

  • From Patient O \(\to\) Patient 0 (~40m)

  • Wrapping up/Logistics

An (extremely) brief history of ACT UP

Activists confronted the challenge of breaking through mainstream complacency

New York Times, 1986

Movement structure often reflects its goals

“One thing about this episode I found incredibly interesting was the discussion of ACT UP’s somewhat decentralized structure, which was largely committee-based rather than having any one leader. I imagine this contributed to the movement’s success and prominence, as they were able to function effectively working within their areas of passion and expertise, without having their priorities or actions dictated by any one individual.”

ACT UP Protest at the FDA (1988)

Big demands and imagination shift the framing of what is possible or feasible.

“I found it interesting that leaders like Dr. Fauci initially started out by being resistant to the calls for change in clinical trails by the activists due to the infeasibility of their demands… However, after hearing more of their concerns through formal or more personal meetings, he realized that all that was needed was a different approach to be taken for this issue.”

Storm the NIH (1990)

Activists confronted and navigated intersecting forms of discrimination and oppression

“I found it very interesting to hear about all of the arrests that ACT UP members endured throughout this time period. I was taken aback when Robert Vasquez Pacheco, one of the episode’s main characters, discussed his unwillingness to get arrested, as he is Puerto Rican and feared that he would disappear in the prison system. This brings into perspective how many social issues are intertwined with the ACT UP movement, including public health, immigration reform, social justice, and more.”

ACT UP defined a more confrontational and dramaturgical approach

San Francisco Channel 7 news coverage of the September 5, 1991 ACT-UP action putting a giant condom on Jesse Helms's house.

From the ACT UP perspective

An enduring and historic direct action

Reactions agains “naming-and-shaming” often reflect the effectiveness of these tactics

I thought the use of public shaming was very interesting as a protest strategy - targeting the greed and self-importance of pharmaceutical organizations and other people in power was a central tool used that enacted change. I see this strategy play out today as something controversial and beneficial at times. Calling out individual people and corporations can be really successful in being very specific and direct with demands. People are so scared of being hated and of “cancel culture” I can see why this protest strategy can be so successful.

Tim Bailey’s Political Funeral (1993)

ACT UP showed that political silence and inaction were hostile, not neutral acts. The group collectively made the ill and dying’s struggle to reverse the conditions that made AIDS a social and political crisis, visible and audible.

The Marys extended this work of support for the ill and dying, taking on the condition of death, which had previously conceptualized as activism’s limit. They made the dead PWA body matter, and through the formation of political affinity, infused the corpse with the power to speak. (From Levine, 2020: “How to do things with dead bodies”)

Tim Bailey’s Political Funeral (1993)

Confrontation is often scary, but also often effective when done strategically.

“I found it surprising how effective the protests and activism were. Going up against government and scientific policies, and being able to make change due to the urgency of the situation is very inspiring. Also, I found it interesting how people without a scientific background were able to essentially become scientists, using the scientific method and trying to make change.”

Confrontation is often scary, but also often effective when done strategically.

“I really am in awe of the persistence of activists and how they made a future for themselves. They were ridiculed and rejected time and time again but they fought for themselves no matter the stigma, prejudice, and bias that was meant to keep them down and weak.”

ACT UP activists have maintained influence through the COVID era despite dissipation of the group in the 1990s

Patient Zero and the search for a villain

A highly questionable but sticky concept

This was the goofiest popular culture example I could find of the “Patient Zero” idea.

A 2018 non-blockbuster (14% on Rotten Tomatoes)

Reading the original Patient ‘0’ analysis

We’re going to spend some quality time with this paper and pretend it’s still 1984

Questions to consider when reading Auerbach et al.

  • If you had read this paper in 1983, would you have found it convincing?

  • How can the fixation on finding “Patient 0” end up harming public health?

  • What analogies to the Patient Zero phenomenon do you see in the other systems we have talked about or your pathogen project?

Patient 0 = “Outside” California

Dugas became a starring character in “And the Band Played On”

Worried that the mainstream media might not give coverage to Shilts’s popular history, his editor at St. Martin’s Press, Michael Denneny, approved a bold publicity strategy. He focused on Shilts’s identification of Dugas as “Patient Zero” and the flight attendant’s conflicts with physicians and public health officials, sensing that the salacious story the journalist had created would prove irresistible. (McKay 2014)

Cover of Randy Shilts’ And the Band Played On

Conservative and mainstream media found a villain

His hunch was accurate: the New York Post’s headline on October 6, 1987, epitomized the media’s response and characterized the popular memory of Gaétan Dugas from that point on. “the man who gave us aids” read the front page, claiming that Dugas “triggered ‘gay cancer’ epidemic in U.S.” Other publications drew upon the frequently rehearsed narrative of a disease introduced from abroad by a foreigner. “Canadian Said to Have Had Key Role in Spread of AIDS,” wrote the New York Times, while the National Review nicknamed Dugas “the Columbus of AIDS.” (McKay 2014)

Annotated clipping from a 1988 People magazine sent to the San Francisco AIDS Foundation

The narrative goes mainstream

60 Minutes, 1987

Dugas in his own words (1983)

From a documentary about the 1983 Vancouver AIDS conference

Genomic data have thoroughly debunked the ‘Patient 0’ idea about HIV

Phylogenetic and geographic analysis of early HIV-1 dispersal shows that it was circulating widely well before Dugas could have been infected. (Worobey et al. 2016)

Nonetheless, the we remain stuck with the concept…

Concepts like “Patient Zero” facilitate the creation of accountability sinks

  • Accountability sinks are social or organizational mechanisms that insulate people in power from the consequences of their actions.

  • “For an accountability sink to function, it has to break a link; it has to prevent the feedback of the person affected by the decision from affecting the operation of the system.” (Davies 2024)

Idea comes from Dan Davies’ excellent book “The Unaccountability Machine”

Next Up

  • Wednesday: Last in-class workday!

  • Next Monday: Lightning Project Updates for last day 😢

References

Davies, Dan. 2024. The Unaccountability Machine: Why Big Systems Make Terrible Decisions - and How The World Lost Its Mind. Profile Books.
McKay, Richard A. 2014. “Patient Zero: The Absence of a Patient’s View of the Early North American AIDS Epidemic.” Bulletin of the History of Medicine, 161–94. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4046389/.
Worobey, Michael, Thomas D. Watts, Richard A. McKay, Marc A. Suchard, Timothy Granade, Dirk E. Teuwen, Beryl A. Koblin, Walid Heneine, Philippe Lemey, and Harold W. Jaffe. 2016. “1970s and ‘Patient 0’ HIV-1 Genomes Illuminate Early HIV/AIDS History in North America.” Nature 539 (7627): 98–101. https://doi.org/10.1038/nature19827.