Why it can be harder fighting for a chronic disease
JEN: So I just have two more questions, one is from Julie who asks, “A big difference between ME and AIDS in the early days was that AIDS was seen as 100% fatal whereas ME only occasionally kills people outright. You commented that Americans couldn’t countenance letting people die. Any ideas on how to deal with that?”
PETER: Wow. Yeah I mean, pointing out how extensive, you have numbers that are very still, you don’t have the deaths but you have numbers that are very frightening as far as the number of people who are affected. And you have the cost to society of that many people being ill for the rest of their lives and far less productive than the non-ill and those, those you know, use what you’ve got, and I think there it’s pretty stunning, upsetting statistics, use the statistics you have. Our numbers, our statistics were rates of death. Yours are how many are affected. And yours are also the, you have a frustrating story of scientific indifference and a medical mystery.
By 1983/84 they did discover the HIV virus and so we knew what caused AIDS early on but you have a much harder road ahead in that sense of figuring out the cause or causes, of pushing for a massive basic research effort to figure that out, and those are compelling stories I think, and use that.
JEN: To put Julie’s question another way, there’s sort of, I mean, and this is kind of a simile I’ve used before but there’s, there’s a way in which the AIDS pandemic was like a tsunami and this is a little more like global warming.
JEN: And we know how to respond to these like these, sort of, these big crises but we have harder, it’s harder to know how to respond to these more slower moving things. Because if I don’t get treatment I will probably still be alive next year, I will probably still be alive in ten years. But I’m probably still gonna be in my bed, not leaving my house more than a couple times a year, not having any friends to socialize with, not being able to eat dinner at the table, not being able to read or think or have a career, or children or, all those things that make life life are taken away from you to different degrees. And so it’s a harder story to tell but I just wonder if you have any thoughts or ideas on how to try to make it feel more immediate and dramatic.
PETER: Yeah, you try, and your documentary is one way of doing that. You try to get media stories, but in this sense there’s kind of a similarity now between HIV/AIDS and your movement. Certainly the country thinks HIV/AIDS is a, was a 1980’s problem.
JEN: Like we fixed that, it’s over.
PETER: Yeah the press, we can’t get press stories anymore, very very few. And the death rate plummeted, but we have the same rate of infections as we did in 1992. The country is completely failing on prevention. Entire new generations of gay men are becoming infected because nobody’s listening and nobody cares. So, hold on one second. So, you have to, you have to just sometimes accept that reality. I think AIDS activists are kind of just living with that new reality and realizing that they’ve just gotta do a far more efficient inside game finding their allies in the medical community.
We’re now trying to find allies in the city health departments and at the CDC to finally get this prevention problem fixed and to lower the 50,000 infections every year. And it’s not gonna be big and, I think we’ve given up on the big and splashy and we’ve given up on using the mainstream media. And we’re doing a purely, a strong, a really strong inside game because there are people in the New York City Health Department, New York State Health Department, San Francisco, all the major cities that would love to lower their HIV, that believe in this too. So we have allies in public health and we’re trying to use that now.
But yeah, it’s hard, and I’m fascinated about things like fighting global warming. They’re having the exact same issue and it’s incredibly depressing. At some point you gotta wonder, you know, when do you resort to really strong civil…you know, tearing things down, you know, real anger. But, it’s horrible when people ignore you.
NEXT: There will be victories. And they will be joyous.
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.
4 thoughts on “Lessons from the AIDS movement: it’s harder fighting for a chronic disease”
Brilliant Jen, highlights the problem perfectly.
There’s a lot in that, and we use it too, but maybe we need more creative work on how to make this a compelling story
I think you hit the nail on the head when you say “compelling story.” The point of protests was to get media attention, to get the nation talking, and that was useful leverage for the “inside” political work. We don’t need huge protests – we just need really artful storytelling, in public spaces, with people (real or projected), that is somehow disruptive (I don’t necessarily mean illegal, just that gets people to stop, pay attention, that makes their jaws drop).
I think the US AIDS movement benefitted in part from being centered in New York and having so many creative people swept up in it. We need artists.
We need specific individual targets. Key people on the inside to target with criitical editorials in their hometown newspapers, signs in their yards, letter writing campaigns (not email). Who do we need to make them uncomfortable enough to do something?
Maybe a senator from a state with the highest population of ME patients? It would be arbitrary in one sense but we could use those numbers to our advantage. Or pick the top three states where ME patients are living. Hit each senator. We could even take out ads in their hometown papers.
Ask for an appointment to meet with them first. Then if no action, start the harassment. ??
Andrea, I wonder what would make people feel uncomfortable? I have lobbied time and again to get the severe people out on public grounds for a kind of sleep-in. would not need to be huge protest but big enough to be in your words ‘uncomfortable’. I want the public and politicians especially to see the level of suffering that goes on with this illness. unfortunately the problem with too many disabled populations is that we are tucked away at home, safely out of sight, going hungrier each year on receding benefits… if we force people to watch an ME patient for six, eight, twelve hours at a time, they cannot deny the level of suffering and desperate need for research.
and yes, I realize there are HUGE logistic issues w/ this idea. but I have ben talking to the ppl from the USDOJ protest, and even the severely stricken are finding ways to show. I don’t think traditional protest methods are impossible in the face of really good teamwork & unity.