Lessons from the AIDS movement

How ACT UP Lobbied Washington

JEN: One of the things I wanted to ask you about, there were a couple of sort of key steps that activists took in Washington and I’m sure that there were others but that sort of came up in the film and one of them was sort of expanding patient representation on various committees and the second one was this sort of lobbying of congress where I think you’d mentioned previously that you had, that there was really a concerted effort to identify specific people who had high potential to be allies. I think very often because most of us can’t be physically present in Washington we have a tendency to think about Congress, the FDA, the NIH as these monoliths and the message that I’m hearing from you is that it’s really important to try to identify who within these institutions are making decisions and who might be sympathetic to our goals.

PETER: Yes, exactly, and within the medical establishment as well. I think one of the reasons TAG was so successful is it started siding with the biostatisticians up at Harvard and Yale that were being very critical of how clinical trials, AIDS clinical trials were being done by the government so we found these PHD allies, some of the smartest in the country and adopted their, coalesced with their criticism and amplified it which made us only sound smarter. But yeah finding those allies in the government and constantly working with them is absolutely key and including on the hill, you know we found the democratic senators and congressmen that cared and when there was budget help we needed or legislation like the NIH Reauthorization Act of 1993 that TAG was very involved with, we had Senator Kennedy on our side that, he’s a, he was a powerhouse.

JEN: And how did you get Senator Kennedy on your side?

PETER: Well, he had a gay aide, they all had gay aides. Washington D.C. is filled with gay aides, so they were our, kind of our natural allies. And obviously that’s not, that’s not something that’s going to be hugely helpful to the ME movement, but you do have, you do have a community, you do have numbers that boggle my mind, I mean, just the fact that your Kickstarter campaign and your documentary blew through its goal by 400% is really impressive, that would have been very hard for ACT UP to have done and somebody in that huge circle of concerned citizens with your disease group has got to have some connections to key people on the hill. And you just have to find those, and get the meeting. And if you ask for a meeting and are denied one, then, just show up and refuse to leave.

NEXT: How to keep the momentum going (even when you want to quit)

For more, browse other short, 2-3 minute videos or watch the full, 70 minute interview with AIDS activist Peter Staley. You can also out the HMC case study of AIDS advocacy, as well as the documentary film How to Survive a Plague. 

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