Last Sunday night, I was feeling pretty low, given the war on women. I didn’t get around to the Times until after 9 pm, when I read Frank Bruni’s editorial, The AIDS Warriors’ Legacy. It gave me hope, and made me want to sit down with a group of activists to figure out our next steps.
Bruni was reviewing the lessons learned from ACT UP as he reflected on them in the new documentary, How to Survive a Plague. I remember, as he recounts, the theatrical protests like the die-ins, but here’s what struck me last night in his piece:
But if boldness had been the sum of Act Up, the group wouldn’t have accomplished so much. It added enterprise and erudition to the mix. A friend of mine who covered an Act Up demonstration in San Francisco remembers standing in the street, chatting over the phone with a group spokesman and telling him that she would file her newspaper story as soon as she rounded up a certain statistic. Minutes later he called back, said that he had found a Kinko’s store nearby and told her that documents with the information she was seeking had already been faxed to her there.
In “How to Survive a Plague,” gay men and their allies are shown educating themselves about antiviral medications, about clinical-trial protocols, about the Food and Drug Administration approval process. They are shown successfully making the case that the trials should be less restrictive, and the process much faster. Because what they’re saying is so concrete and constructive, scientists can’t avoid paying it heed.
“If you come at a problem in a way that’s just disruptive and iconoclastic, but you don’t know what you’re talking about, all you are is a nuisance,” said Anthony S. Fauci, the director of the National Institute of Allergy and Infectious Diseases, when we talked last week. Act Up’s leaders, he told me, knew what they were talking about. As a result, they “cracked open the opaque process” of drug development, altered the patient-doctor relationship and “changed the whole face of advocacy,” he said.
So, activists, what are our next steps?
How do we come together to plan and execute a strategy? That’s what I’ve been ruminating about this week.