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by jseliger 1004 days ago
I don't know about the situation in Australia, but in the US the FDA is way too slow and arbitrary, and it's costing lives every year, including, soon, mine: https://jakeseliger.com/2023/07/22/i-am-dying-of-squamous-ce... (HN discussion: https://news.ycombinator.com/item?id=36827438).

People with what I have—recurrent/metastatic squamous cell carcinomas—are in effect already dead. We should be able to try novel drugs faster, and, if they don't work or have serious side effects, fine, the end result is the same. If they do work, they may prolong everyone else's lives.
4 comments
slashdev 1004 days ago
Have you tried obtaining the drugs by other means?

My mom is taking an experimental drug, not FDA approved, which my dad obtained from India after much research and after consulting with her doctor.

Tests have shown she’s a part of percentage of the population that doesn’t metabolize tamoxifen well, so the drug is useless to her. Instead she’s taking endoxifen, which is the main active metabolite of tamoxifen. It’s currently in clinical trials.

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kstrauser 1004 days ago
Sorry to hear that, and I agree completely.
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mortureb 1004 days ago
I’m sorry for what you’re going through. I think there really should be a separate FDA category for people with a few years left to live. Still not available to the general public but something a physician should be able to recommend to terminal cases.

Have you tried directly calling or visiting the trial location and try to get in touch with the person administering these to see if you can get in that way. Alternatively if you’re rich you can commission a lab in India to make these for you. They have a lot of experience making the covid mRNA drugs so should be able to pivot relatively easily if you’re paying enough. Bharat labs made the Covax vaccine so maybe start there but I’m sure a bit of googling should bring up more labs.

You have nothing to lose man. If you’re too sick to call around I hope there is someone in your life who can. Go down swinging, contact an Indian/Chinese lab today.

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mortureb 1004 days ago
As the other commenter mentioned, I knew someone that had fantastic results just getting her “experimental” drugs from India.
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jassyr 1004 days ago
Curious, are these easily found and purchased online? Or does one have to go through some "darkweb" channels?
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mortureb 1004 days ago
They are of Indian origin so they knew doctors directly in India.
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