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this post was submitted on 09 Dec 2023
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If only we knew what the real costs of treatment are, not the bullshit prices the industry decides they'll say it is and then negotiate a barely more realistic real cost with insurance companies.
Guess we'll have to wait until this is approved in other countries for a real answer.
Hard to know the price in other countries when it's free, eh?
Just because they don't issue a bill doesn't mean they don't track costs. They track labor, labor rates, and consumables.
That said, this particular treatment is very involved. They harvest cells over multiple periods, send them to a lab to be modified, and when they are ready they do chemotherapy to kill your immune system, then do a bone marrow transplant to introduce the modified cells, and then you have to be in isolation in a hospital until your immune system comes back. Even the best facilities are saying they can only do 5-10 of these per year.
Pretty crazy.
It's also wild that the first step of the treatment is chemotherapy.
It's actually not expensive just because. They don't manufacture this stuff in a pill packing plant with an automated machine that just churns this out.
Cell therapy takes blood from a patient and manufacturers with it to make the drug. It's made manually by a team of people for a specific patient. The material costs alone are a quarter of the price in most cases.
Cell therapy ain't cheap.
It's tricky because the money, time and opportunity cost gone into development, testing and the approval process are also priced into this. Plus the fact that this needs to not only break even but make some money plus the fact that this won't be relevant for a huge market I think (not sure how prevalent SCD is). So it's an outrageous price but probably not just plucked out of thin air
This is why pharma research should be publicly funded, and the results go directly into public domain. We will save so much money and lives in the long run that way.
A LOT of pharma research gets significant public funding. They then patent it and privatize the profits. Then spending millions on advertising.
Then they try and justify pricing from the total cost of not only development, but also advertising budgets, while avoiding any mention of where the actual development funding came from in the first place.
That's not for everything, but it's a large enough number of drugs and treatments that the entire industry is based on bullshit.
The bigger one is to decouple development from manufacturing.
Development should be done on a bounty type system. Both countries and individual groups can put money into bounties.
Once the bounty is claimed, then the drug is effectively free for all to produce. This lets us leverage capitalism to push prices down.
This would reshape drug development from max money, to most needed.
I like this - but would companies that fail (in being second) not get credit for their work? You could imagine the second place actually having a more effective product at the end.
You don't have a yes/no payout. You have a graded payout. E.g. you might have a 1 shot cure pay out the full amount, but a sustained treatment only pay a smaller %. This lets you encourage development of the most effective treatment, not the most profitable. It's currently better to make a condition chronic, and so need treatment for a lifetime, than develop a cure.
You also don't pay out all at once. By spreading it out over sat 10 years. It means it can be adjusted if the company's claims are... less than accurate.
That's bullshit! The most advanced technology ever developed by mankind and the most expensive to develop is AI. And I can pay Open AI 20 bucks a month to hire what is basically a human in the 10th too percentile for 20 bucks.
The only difference is the elasticity of the market. If I need your fucking drug and you have a patent then I will have to give you all I have so I don't die.
The healthcare system in the US is just fucked up.
You have no idea how any of that works do you