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That the insurance was cut. Ethics of private drug R&D aside researching costs resources, resources need to be reimbursed, and if you have a drug that heals a rare illness with one dose you sell very few doses. Another drug for another illness might cost as much to research, but you need a dose every month and there's millions upon millions of patients. Let's also assume that both drugs cost the same to produce, per dose. Which means that to cover total costs a single dose for the first drug might have to cost two millions, and the other 20ct.
The alternative to this is saying "You have a rare illness, tough luck, we won't research drugs for it it benefits too few people".
Places very tightly control the price drugs can be sold for all over the world. They audit the cost of operation, RD, etc and then adjust the price based on a regulated percentage of profit. This means that drug prices, in the rest of the developed world, are far lower than the US. Even in places with non-socialized healthcare like Switzerland, and Japan. Drug companies are still there, still making money, and not increasing drug prices by 1000% because they want to. Then there is the humanitarian practice of subsidizing the cost to patient for exceptionally expensive treatments. For example, the alternative treatment to this drug is more than twice the cost of the drug, it is also less effective, leaving a lot of long term costs. So EU countries, for example, subsidize this drug because it actually ends up saving the tax payers money to do so. This makes it available to the ~1/10000 citizens with the condition, spinal muscular atrophy.
In the US this will likely bankrupt these people, leaving the costs for them and the taxpayer. This ends in a total loss of economic productivity higher than the government just footing the cost for the drug in the first place. The US system is lose/lose. Both the patients and the government pays more than anywhere else. The only people winning here are corporate executives and their shareholders.
That's why I prefaced the whole thing with (more or less)"capitalism aside": Everything you said also applies to drugs which are still overpriced, but definitely cheaper in the US. The reason this kind of drug is especially expensive, also in places not as fucked as the US, is that it's a) a one-dose cure and b) for a rare disease. If it were a monthly injection instead of a one-time one it'd still be as expensive but not per dose but per patient-lifetime, and if twice as many had spinal muscular atrophy it'd be roughly half as expensive.
The bargaining EU insurers do with drug manufacturers takes that into account because, as said, otherwise there'd simply be no drugs for those rare diseases.
Overall I think it'd be better for insurers to fund drug research more directly but also then researching cures for rare illnesses would cost a lot of money per manufactured dose.
I think you missed the point of the second part of my statement. That the government pays for expensive treatments because, in the long run, it actually costs less for them to do so, than to hold the patient liable. This means the cost to patient will never be 2.1 million dollars, which accomplishes the goal of drugs not costing that much where it matters.
The only prescription drugs that are cheaper in the US are off brand generics. This is the case because other options are 3-4 times more expensive, on average, than in the EU, so the increased demand for generics creates a manufacturing scale that drops the prices per unit. This price decrease is 20-30% on average. People in the EU are fine with brand names because they aren't drastically more expensive than generics, even at US generic prices. The end of the day though, they pay less for drugs, as whole, than we do, and no patient is paying 2.1 million dollars for a drug.
If I go to the pharmacy I'll generally get generics, if available, because the insurance is going to give the pharmacist a kickback for finding an option that's below list price. They'll also ask doctors annoying questions if they write a product instead of a drug name (Aspirin instead of ASA / acetylsalicylic acid) on a prescription.
In fact if they didn't do that I'd happily vote for people who'd institute such policies when the next board elections are up.
...that's the economical equation. The legal equation though is that my insurance is required to pay for everything medically necessary, and that might very much be more expensive than not treating me. Health insurance doesn't pay welfare for people with, say, severe but manageable OCD: Unemployable yet not in need of assisted living, incurring no more medical costs than the average person. Yet if a cure were available they'd have to cover it.
The economical equation comes into play when paying for or subsidising stuff from fitness apps to whole holiday retreats which are just a scheme to make you take a nutrition and cooking course and similar things.
Except Zolgensma's R&D was funded through the NiH. The only reason why it costs millions per dose is because Novartis bought AveXis for 8.7 billion solely to acquire the rights to Zolgensma.
[citation needed]?
Wikipedia mentions that it's based on research from the Institut de Myologie, France, nothing about the NiH.
Also I already made the whole capitalism angle an aside. Plenty of people are talking about it, meaning I don't need to talk about it. One-dose cures for rare diseases are more expensive per dose than multi-dose treatments for common diseases under any system, that's what I wanted to say.
I get that y'all yanks hate your medical-industrial complex, and you're right to, but that doesn't mean that everything is expensive just because some suit rolled some dice.
https://www.durbin.senate.gov/imo/media/doc/Senate%20Ltr%20to%20FDA_Zolgensma%20Data%20Issue.pdf
"benefited from comparative studies on patients with spinal muscular atrophy", that's not "funded the R&D" but "NiH did studies and AveXis read them". If it was more than that they wouldn't use that kind of weasel language that only implies, but doesn't say, things. The rest is approval fast-track which saved AveXis money, but didn't cost the tax payer a dime.
I'm not saying that they're not overcharging -- of course they are, they definitely are, especially after getting bought up by Novartis and given the US's inability to actually bargain with drug manufacturers. But this narrative of "taxpayers fronted all the costs" ("R&D was funded through the NiH", implying all of it) is BS.
And even then, and I fucking knew what I was doing when I said "I don't wanna talk about the capitalism aspect", the drug would've still been more expensive to develop, per dose, if it was fully state-funded.
Also I wouldn't be surprised if the French research that led to the whole gene therapy stuff in general was 100x more expensive than those NiH comparative studies. It's foundational research companies never do that kind of stuff. Probably at least 10-20 PhDs in that overall, funded by the French taxpayer.
The cost of the drug. Since the US refuses to socialize Healthcare, people can't afford insurance if companies can charge millions for their dosages, and keep getting higher. My insurance at work covers me, but adding family is already at $800/month. My take home pay (without family insurance) amounts to $2,200 a month.
Companies charging millions for cures in the US means only the wealthy get to be fixed.