Comment by Aurornis
18 days ago
> No, what I mean is it takes pulling teeth to get someone who would die anyway, the ability to try experimental drugs even with a doctor’s prescription.
This topic came up in another online community (which I'm intentionally not mentioning) a lot a few years ago. I left a comment about why giving experimental drugs to terminally ill patients is not a simple or obvious idea like many would assume. I got some very long, very intense replies from someone who was dying of a type of cancer who believed he had a good shot at recovery if he could get his hands on an experimental drug. He had all of the links and papers to prove it.
I remember trying to take it all in and reconsider my position.
A few years later, there was a post from his wife that he had died. It was a very sad situation. I clicked some of her links and found that he had a blog where he had written a lot. He actually did go through with the process of requesting the experimental drug and his request was granted. However, the drug not only didn't work, it had caused some irreversible damage to his body that made his final months a lot more painful and difficult than they had to be.
Apparently the "compassionate use" exemptions are not as hard to get as the anti-FDA writers have led us to believe. The harder part is often getting the companies to provide the drugs, because they know the risk profiles and uncertainties better than anyone and aren't always interested in letting terminally ill patients experiment on themselves outside of the process.
Sounds like you might be talking about Jake Seliger, and indeed, his and Bess' fight to get treatments was rather eye-opening for me too.
Jake's blog where he posted throughout his entire illness: https://jakeseliger.com/
Bess' blog: https://bessstillman.substack.com/
It was a heartbreaking story to follow, and one that hit me a lot harder than I thought it would when Jake died.
experimantal, not fully proven drugs available to help terminally ill patients (which should be true) needs first to make sure the patient is terminally ill. it is not about making them available OTC to anyone who asks. because what happens then is free for all, scams and corporate experimentation on live population.