[xp84]

I don’t think this is about inspecting supply chains, or keeping anybody safe. It’s about somebody’s profits. Other times it’s about the FDA’s incredibly overconservative approach, which keeps many meds you can buy OTC everywhere else, Rx only here, and keeps other drugs available elsewhere illegal here. Even for people facing terminal illness.

[throwaway290]

if it helps people facing terminal illness it doesn't mean it should be OTC. "facing terminal illness" probably needs strong stuff. something required for that can harm the normal guy. it's not like Vit D supplement.

[xp84]

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.

It’s a separate dysfunction than their obsession with making things Rx-only, such as for example, an albuterol inhaler. In Mexico you can just grab one at a drugstore.

[Aurornis]

> 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.

[squigz]

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.

[throwaway290]

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.

[estearum]

Anyone can read about the requirements for Expanded Access/"compassionate use" here: https://www.fda.gov/news-events/expanded-access/expanded-acc...

IMO this all seems very reasonable.

What specifically do you think is problematic about this, and how do you propose that we mitigate companies from preying on desperate patients while making it easier for patients in need?

[SR2Z]

What about drugs that were initially prescribed, but have to be taken for a long time?

A long time ago I had a Lexapro prescription. This is a very, very common drug and is on the list of the WHO's essentials for bootstrapping a healthcare system.

Then I quit my job and spent a few months unemployed. I was no longer seeing the psych who prescribed them and I was not covered by health insurance.

The last few refills my prescription had? Walgreens bumped the price to $200 a bottle, and unless I paid another doctor there was no way to keep taking the medication I'd been on for two years.

Mind you, this drug is old and generics are CHEAP. I've also got all the knowledge I need to take it safely because I have been.

Instead of doing that, I made the decision to quit rather than deal with the doctor mafia. We let people buy industrial chemicals on the Internet and trust they're not gonna kill themselves with it, but somehow my situation was an unacceptable risk?

[throwaway290]

it's implied that country should have a working healthcare system too.