4 ms·
Does this mean the therapy won’t be used anymore, or is Cerebral Adrenoleukodystrophy so bad that the FDA will let people roll the dice?
by elil17 2y ago
Does this mean the therapy won’t be used anymore, or is Cerebral Adrenoleukodystrophy so bad that the FDA will let people roll the dice?
- kikokikokiko 2y agoIt's a death sentence, in the sense that you either die from it or you become a vegetable. If I'm not mistaken, the treatment cures the disease in 90% of the cases, so it's definitely worth rolling the dice. You literally have nothing to lose, and the payoff can be infinite. The Kelly criterion on doing or not doing the treatment is all in, all the time.
- paulpauper 2y agoit's not free. it's $3 million. someone has to pay for it
- epicureanideal 2y agoAlthough hopefully if the government is paying for that it’s helping the underlying technology become cheaper over time.
- myprotegeai 2y agoPharma love when governments are on the hook for their outlandish prices. It's why there's a revolving door between public and private...to smooth deals like these.
- fshbbdssbbgdd 2y agoIf the government wasn’t allowed to hire from private, it would be starved of talent. That would be a great scheme to hobble any agency you don’t like.
- myprotegeai 2y agoIt isn't as binary as you're making it. You can hire people who don't have conflicts of interest, or the perception of conflicts of interests.
- fshbbdssbbgdd 2y agoYou can cut it more finely but I think you still run into the same issue. The best candidates to run an agency that regulates a particular industry are going to highly overlap with the best candidates to be leaders in that industry, because they have knowledge and experience over how that industry works. Sort of like how many top law students choose between clerking at federal court and joining big law, or do one after the other. And people who become judges often did both. If you ban people who worked in private practice from being a clerk or judge, you would have a lower quality judiciary. Ultimately, I think you end up with the B team trying to regulate the A team.
- SturgeonsLaw 2y agoThe prices are less outlandish in single payer healthcare systems as the government's monopsony can force prices down
- myprotegeai 2y agoYou seem to be under the impression that the government works on your behalf to save you money.
- SturgeonsLaw 2y agoIt does. The Pharmaceutical Benefits Scheme here in Australia is a lever that the government pulls to negotiate lower drug prices https://www.pc.gov.au/inquiries/completed/pharmaceutical-prices/report https://www.pc.gov.au/inquiries/completed/pharmaceutical-pri... It also pays an additional $5B p.a. in drug subsidies.
- myprotegeai 2y agoCan you describe the incentive structure that makes sure Australians require less drugs in general? That's the bigger picture. Getting a discount on something you shouldn't need in the first place is not a win.
- LarsDu88 2y agoHonestly, $3 million for a tailor made (needs to be customized for every patient individually) single shot cure that saves a person's life is pretty reasonable. The median lifetime earnings for an American is about $1.7 million though. For a mother, a father, and the patient, it might be worth it.