Can the Methods of ACT UP Bring Quicker Cures for Other Maladies?

Amar Bhidé has a thought-provoking article in which he asks the public choice question of how to overcome government regulators who slow the development of breakthrough drugs. He holds up, as a main example to ponder, the AIDs ACT UP movement that is often given credit for winning concessions from the FDA that spurred the availability of a drug cocktail that greatly extended and improved the lives of AIDs patients. The passages quoted below are from a review of a book that may be a promising source for learning more about what ACT UP did and how they did it.

(p. C3) In her 2012 book, “The Gentrification of the Mind,” Sarah Schulman delved into the silence still surrounding AIDS in America.

. . .

Schulman has gone from witness to a sort of living archive. She is a former member of AIDS Coalition to Unleash Power, the influential direct-action group committed to ending AIDS. Her new book, “Let the Record Show,” is based on 17 years of interviews she conducted with nearly 200 members of the organization.

. . .

The effect is rather like standing in the middle of that large room, where anyone could speak up and share an idea. Everyone is talking; small stories branch off, coalesce pages later. Speakers shade in one another’s stories, offer another angle, disagree passionately. You turn a page, and the same people have their arms linked together at a protest. Shadows start to fall; in squares of gray text, deaths are marked, moments for remembrance. So many people leave the room.

. . .

This is not reverent, definitive history. This is a tactician’s bible.

The organizational brilliance of ACT UP emerged out of necessity. The group was founded in 1987, incited by Larry Kramer’s famous call to action. The members were infected, their lovers were sick and dying. There wasn’t time to obsess over process, to contest every comma in a letter. The anarchistic framework asked only that members be “committed to direct action to end the AIDS crisis.”

. . .

When Schulman herself returns to the individual, it is to think again about the figure of the bystander. Why did these particular people rise to the moment and not others?

What thread connected an H.I.V.-positive stockbroker, a retired chemist from Queens, addicts, art students, lifelong activists, people who just happened to be in the next room at the center and wandered in, What was going on in there? For some it was their first experience of gay community; for others it was where they went when the community began to vanish. All of them became autodidacts in drug research, policy, media relations.

For the full review, see:

Parul Sehgal. “Remembering Those Who Stood Up.” The New York Times (Wednesday, May 5, 2021): C3.

(Note: ellipses added. In the original, the words NOT italicized above, were the only words that WERE italicized.)

(Note: the online version of the review has the date May 4, 2021, and has the title “A New Testament to the Fury and Beauty of Activism During the AIDS Crisis.”)

The book under review is:

Schulman, Sarah. Let the Record Show: A Political History of ACT UP New York, 1987-1993. New York: Farrar, Straus and Giroux, 2021.

The article mentioned above by Bhidé is:

Bhidé, Amar. “Constraining Knowledge: Traditions and Rules That Limit Medical Innovation.” Critical Review 29, no. 1 (Jan. 2017): 1-33.

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