From a New Yorker article about terminal ALS patient advocates demanding drugs that the FDA has not yet adequately tested, and the hatred faced by critics and dissenting ALS patients:
The skeptical [ALS] patient told me that he thinks about this all the time. “There are maybe twenty-five thousand of us now,” he said. “But when you do the math the total number of people in the U.S. who will ever get A.L.S.—maybe five years from now, maybe seventy years—is well over half a million people, and we owe them actions and policies and principled behavior that maximize the odds of getting a therapy that stops or prevents this disease. Part of this, for me, is the clarifying effect when you’re given a terminal diagnosis: How do I want to live the rest of my life? I try to live as best I can.” He was willing to articulate this argument only anonymously, because it left him vulnerable to nasty mobs on social media: “When you mention our obligations to people who don’t yet have A.L.S., you don’t always get a positive reception.”
It’s simple. ALS is a death sentence. The condemned want to obtain any potential remedy now—without waiting for the clinical trials deemed necessary by the FDA and its medical scientists. They are worried about releasing useless or harmful medications that also beggar the resources of the poor, fleece the better off, and drive up the premiums of all the insured. The pharmaceutical companies recognize that the patients are an invaluable ally in securing early release of questionable drugs. They pump money into the patients’ advocacy groups. The dying are partners in peddling empty hope, enriching the pharmaceutical shareholders and undermining the slow procedures of scientific research.
Everything in this article confirms my personal sense of things present and past. Thirty-five years ago, I was appalled by AIDS advocates who attacked the FDA as murderous bureaucrats who maliciously withheld troves of sure-fire cures because of a pedantic concern with abstruse statistics. The article quotes how Larry Kramer was ready to declare victory every time a half-baked remedy (cucumber extract!) appeared on the horizon. I could remember the shock of the deformed babies of European women and American women who had obtained thalidomide abroad. It was restricted here by an FDA that resisted its release.
This probably can’t happen now. Patient advocacy groups receive support from the pharmaceutical firms that have transformed the FDA from a consumer protection agency to the opposite task of making new drugs available as soon as possible. HIV/AIDS and now ALS advocates are becoming fronts for a pharma industry that is enabled by their advocacy to release unproven remedies and sell them to the desperate for astronomical sums. It’s a complex ecological system that seems to link ideological opposites (homophobic anti-regulation conservatives with gay AIDS advocates, and no doubt transphobic libertarians with advocates of transition-aiding drugs). The ubiquitous invisible force that institutes these improbable alliances is our “I’m-Number-One” mentality disguised as patient advocacy. It’s an invisible gravitational force that reshuffles the playing field, creating winners and losers. Money, egotism, and fear of death are a juggernaut. Almost everyone is under their sway. Egoism disguises itself as altruism. Hope is marketed like crack cocaine. Dissenters and skeptics are cast out.
Signed,
Andrew (Weeks)
Normal Thoughts 