I am dying of squamous cell carcinoma, and potential treatments are out of reach

Post by abecedarius » Sat, Jul 22, 2023, 6:34 PM UTC

Kamq wrote: post #114

tux3 wrote: post #3

There seems to be a growing sentiment that FDA delenda est , but if we don't fix the underlying problem that led to this situation, it will just come back. As the author says, no one ever blames the FDA for the people it failed to save. But approve something without the certainty that it isn't potentially going to kill someone, and there will be hell to your doorstep. Even if you want the experimental treatment, you…

I still think they need another category than what they have now. My understanding of the current categories of drugs are you have "banned" and "has this specific therapeutic effect that costs billions of dollars to prove". A category of "this doesn't kill you" in the middle would probably alleviate most of this. Insurance only has to pay for things with proven therapeutic effects, but you can shield people from pois…

Post by [deleted] » Sat, Jul 22, 2023, 6:34 PM UTC

Post by scoofy » Sat, Jul 22, 2023, 6:35 PM UTC

abhaynayar wrote: post #77

I read this, and while I felt immense sadness, I will obviously move on with my life soon enough and forget about it. I wondered, if I were ever in the same situation, and someone read what I wrote before dying, they might empathize for a bit, but then they'd move on as well. I just really wish that there's something beyond death, that there's something out there, and that all the suffering and unfairness and randomn…

Post by abecedarius » Sat, Jul 22, 2023, 6:36 PM UTC

indrora wrote: post #153

A_D_E_P_T wrote: post #72

There's a very easy regulatory solution: Roll the drug approval process back to the way things were done prior to 1962. Back then, safety testing was all that was required. Efficacy testing -- which is difficult, expensive, arguably unethical in itself, and in some cases effectively impossible -- was not required. Drugs cost ~20-50x less to bring to market, and were brought to market faster. Indeed the 40s and 50s ar…

Ah yes, let’s go back to the days of Thalidomide. For those that don’t know, the 1962 change is the Kefauver–Harris Amendment, which was a response to one of, if not the, largest overall global crisis of conscience in the medical field. From Wikipedia: “When first released, thalidomide was promoted for anxiety, trouble sleeping, "tension", and morning sickness.” After some time it became increasing obvious that while…

Post by darkclouds » Sat, Jul 22, 2023, 6:36 PM UTC

londons_explore wrote: post #169

exmadscientist wrote: post #133

Earlier quoted context omitted.

To sibling commenters: immunotherapies aren't the only problem. There are a ton of truly evil companies out there pushing therapies that do not work, have never worked, and will never work, because they literally have no possible mechanism to ever do anything . This is a crime, but it's very very hard to prove. And these companies get very good at gaming the system, because that is their product. They are mechanisms…

A simple way to stem most snake oil is to put all payments for snake oil treatments into escrow till the treatment is approved. Then the snake oil manufacturer can peddle their unapproved treatment to as many people as they like, but they are losing money on every dose unless the treatment turns out to be safe and effective. Obviously you need a big team of scientists on the approval panel to make sure no snake oil s…