I’ve been spending a lot of time in my basement recently as the long winter months s-l-o-w-l-y slouch toward spring. Because of the snow, I seem to do all of my bicycling down there, not to mention a good deal of running and even (yes!) swimming. The “swimming” is actually dryland strength training with resistance tubing, but 25+ minutes of pulling pretty much feels like a normal swim workout when all is said and done. I still go to the pool a few times a week when it isn’t closed for winter break or because of snowstorms. I do hit the road, trail, and track for my Thursday speed sessions and my Sunday long run. I’ve even been out on the road with my bike a couple times this winter, but mostly I ride in the basement.
Last Saturday, while spinning through a two-hour endurance ride on my tri-bike while going nowhere, I watched the entirety of the documentary that is going to win the Academy Award this weekend: “How to Survive a Plague.” It was phenomenal . . . one of the best documentaries that I’ve seen in a long time. It was relevant, important, and insanely well-produced. There are a number of very poignant moments in it. None more so than when respected activist Larry Kramer angrily interrupts a
meeting petty squabble brewing into a full-blown internecine battle within the AIDS activist community of the late 80s. “Plague!” He belts out, as if the voice of an oracle, silencing the argument. “We are in the middle of a fucking plague! And you behave like this?! Unless we get our acts together we are as good as dead.” Powerful!
It was also extremely relatable.
However you feel about the ACT UP organization, the documentary provides a lot for people with diabetes to think about. The “PWAs” (People With AIDS) in the 80s and 90s clearly had a more immediate and inevitable risk of early death than PWDs (People With Diabetes) do now, but it wasn’t until they organized and started to take direct action that they started to get noticed. They had (and continue) to battle the belief that their disease is an inevitable (and some even said deserved) consequence of their “lifestyle choices.” The FDA was very slow to approve new therapies to control HIV, preferring to get all of the data on efficacy and safety as if it were just another health condition, and not one that was killing people while it delayed. After ACT UP became immersed in the scientific literature and informed about the drug approvals process, they proposed a new, medically sound treatment protocol, which doctors and regulators at the FDA and NIH eventually started to take seriously. Patients/advocates interacted constructively with pharmaceutical manufacturers, who—like everyone I have ever heard of in diabetes medical research—truly wanted to improve the lives of their customers/patients. Nevertheless, the struggle to find an effective treatment for HIV/AIDS also involved issues of healthcare access and cost, since early treatments cost tens of thousands of dollars per year and still continue to be out of reach of many in developing countries even at more modest prices.
I remember the AIDS crisis and ACT UP from my youth, and I sometimes joke that the diabetes advocacy community needs to be willing to get arrested every once in awhile to highlight the fact that we still live with an expensive, incurable disease, which continues to kill people of all ages far too often, and that the FDA approval process is far too slow and the NIH budget for diabetes is far too small. I never seem to get anyone to say they would be willing to follow me to the barricades when I suggest this on DSMA . . . probably because I am also unwilling to get arrested. After all, I have a mortgage and a wife and a cat who depend on me; and I would probably lose my health insurance if I got arrested. That wouldn’t be good.
I do wonder though, what can people with diabetes learn from ACT UP and its offshoot Treatment Action Group? How far can we go to raise awareness without (say) occupying the NIH? How do we make the public take notice of our disease and be more active on our behalf?
What do you think?