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jseliger | 1 year ago

I hope too to accomplish at least two concrete ends:

1. Help and educate other people who are suddenly facing the opaque clinical-trial system: https://bessstillman.substack.com/p/please-be-dying-but-not-...

2. Ultimately, reform and speed FDA approval for fatal diseases like recurrent / metastatic head and neck cancers: https://jakeseliger.com/2024/01/29/the-dead-and-dying-at-the.... A drug like petosemtamab (MCLA-158), which I was on from Sept. 27 2023 to March 29 2024, should already be approved, instead of continuing to wander around in clinical trials.

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keeptrying|1 year ago

Yes the clinical trial system is super opaque and it's not clear what benefit one can get if one doesn't understand the process or even the risk profile of it.

This lack of patient agency applies to all of medicine, really.

I plan to improve patient-doctor relationship in general. Gut tells me that enabling educative access to the basic sciences component of medical school and paring it down to patient specific focus, we can enable much higher patient agency through better patient-doctor communication and a deeper understanding of ones condition.

More importantly a better decision making process and ability to query and understand the doctor.

I've been through this with my wife and it's just so important.