How To Create Actual Change

After watching How To Survive A Plague, Josh Barro identifies why ACT UP was so successful:

ACT UP activists weren’t just angry about national apathy and inaction on AIDS; they also had specific demands and constructive ideas about how the government and drug companies could do better. Unlike a lot of protest movements, once they got to the stage where the targets of their protests said, “I’m listening. What do you want me to do?” they had concrete answers.

A few things you see ACT UP demanding (and getting) in the movie are: hospital policies that don’t discriminate against AIDS patients; more funding for AIDS research; lower prices for AZT, the first effective anti-AIDS drug; a faster drug approval process, recognizing that 10 years of effectiveness trials didn’t serve the interests of people on the verge of death; and allowing HIV- positive people not enrolled in drug trials to take experimental drugs at their own risk, the so-called parallel track.

Yes, but this somewhat distorts one of the key nuances and virtues of the movie (my review here).

There were two sides to ACT-UP: the drama-laden, spectacle-creating, brilliant rage-filled actions against an indifferent government versus the pragmatic, step-by-step laser-sharp emphasis on actually creating change in the ways Josh describes. The latter group became Treatment Action Group or TAG. The film exposes these rifts – rather subtly (which makes it much more interesting than agit-prop. At the time I feared the over-the-top dramatics could undercut our message; in retrospect, not so much – especially since those protests and the expression of that anger helped keep people alive. But it was the meticulous grasp of the science, the trial process, the FDA and the NIH that really helped accelerate the process and organize it. That was done by often maligned young white males – like Harrington and Staley and Gonzales – and it made a real difference.

What we sometimes forget, however, is that there never was some miracle drug the government had that was somehow being withheld. There never was a chance to launch a Manhattan Project against a retrovirus that had not even been identified when so many started to die. No one had ever stopped a retrovirus in human history before – and HIV remains the only one. This meant really hard research, using fast-accelerating technology to bring about a revolution in treatment and quality of life.

In retrospect, as the film demonstrates, the first wave of anger was totally unjustified and completely pointless. The science simply wasn’t there – and science takes time. The second wave of anger combined with relentless engagement with the drug companies and FDA was what made a difference. Yes; make a stink. But also: be ready to take yes for an answer, to leave grudges behind, to focus almost manically on the prize and do your best to ignore everything else. Not easy. But by some strange alchemy – and the courage that comes out of terror – it was accomplished. Or else that last sentence would never have been written and this blog would not exist.