Don’t just get mad, decode the system
Here is the latest menu item on my "Get Smarter in 90 Minutes A Week" media diet: The other night I watched How to Survive a Plague, a film about ACT UP and its activism to fight AIDS. I am not sure why I chose to view the documentary from 2012 now; maybe it is that I just came off a seven-day bike ride in California to raise money and awareness in the fight against HIV/AIDS, during which I had a number of conversations during the ride about the progress against the disease, and the many remaining challenges.
What I did not realize until after the fact is that I was watching the film on the 25th anniversary of one of the film's key moments. This week in 1989, activists were able to shove their way into the International AIDS Conference in Montreal. As the film shows, the insurgents were there to make much more than just a ruckus in support of speeding up the testing of new treatments for the disease. Members of ACT UP had the smarts and focus to study and decode the Food and Drug and Administration's system for drug approval. The activists forced their way into that meeting with more than banners, placards, and slogans: They had drafted a smart action plan that would radically change the fight against AIDS.
Activists had come up with the now-famed National AIDS Treatment Agenda: 15-pages long and printed with a yellow cover. This agenda proposed — demanded, really — a series of changes to the drug approval process to make clinical trials of new medicines for AIDS, and the opportunistic infections that are associated with the disease, better meet the needs of patients. It was the product of some very smart systems analysis from people without a formal background in this area of medical research and drug regulation. These activists applied intellectual rigor to figure out how the federal system worked and what it might need to get drugs to desperate people more quickly.
As the film shows, thoughtful medical statisticians got a copy of the agenda that day 25 years ago and took seriously many of the recommendations. Eventually, activists, patients, researchers at the National Institutes of Health, members of Congress, and officials at the FDA would come more closely into line in the fight against the disease.
One of the activists who figured out the AIDS drug process was broken and contributed to new thinking on ways to fix it is Mark Harrington, who won a MacArthur "Genius" fellowship in 1997 for his work in this area. Although Harrington doesn’t have an MBA, he was acting on a lesson from business: He understood the power of a deep systems analysis to diagnose something big that was broken.
Another star of the doc I watched last night is still working hard in the fight against the disease. Peter Staley wrote a column just the other day calling for a new set of changes to America's HIV prevention efforts.
On the 25th anniversary of the original agenda, he points out that 50,000 people a year still get infected every year — and that figure is just for the United States.