america is so fucking based man
in any proper country that company at least gets forced to pay by the government then ordered to shut down forever due to wanton cruelty. all the employees get generous severance except whoever made that call. depending upon your view of carceral punishment there are a few ways to go with that guy.
I’m not sure what’s worse, the insurance was cut or that a life saving drug is 2.1 million?!
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.
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.
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.
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.
Definitely that insurance was cut. Drug R&D is expensive, and they need to pay people who work and have projects that don’t pan out. But they should be able to spread that cost over everyone in the pool, reducing the cost to everyone to mere dollars or cents. But that requires insurance to actually fucking do their job.
Drug R&D is expensive, but it’s only 21% of the top 15 Pharmaceutical companies’ revenue. And that number is actually misleadingly high because it actually includes some actions that are just meant to help advertise the drugs.
I really don’t want to defend pharma but that study is a bit dubious.
There’s a bunch of issues but the most obvious is simply that a percentage of turnover is meaningless.
What percentage would be right?
Drug R&D is expensive
You mean the R&D that the government paid for to take place at a public university, as is the norm? That’s the expense you’re claiming justifies this profiteering?
Until they start actually paying those subsidies back, that excuse doesn’t explain any of their profiteering.
I’m a researcher in the biological sciences at an institute which receives lots of government funding, and was at a university before my current position. We are not being paid to develop drugs. We are being paid to develop new knowledge that hopefully can be useful (in the broad sense of the term). Practically no one I’ve ever met during my time in academia is developing drugs, and the small few that were doing so were only researching a single, small part of a very long, complex process.
The R&D you are paying for is for us to typically find out that “Protein X interacts with Protein Y and causes Effect Z. When we delete Protein X then Effect Z goes away”. We might also find out that “Molecule Q can block the activity of Protein X, but has a host of issues that make it ineffective when given to Petri dish cells and mice.” This can give you a lead towards making a drug, but what we do is basically discover a possible starting point, nothing more. If someone wants to make a drug from this, they typically will start a company and get venture capital and angel investor money, as university labs are usually poorly equipped financially and talent wise to actually develop a drug (to speak nothing of pushing it through clinical trials). Transforming Molecule Q into a bona fide drug candidate is going to require a massive amount of work that most lay individuals are completely unaware of.
I’m really curious where this concept that the government is spending tons of money on drug R&D at publicly funded universities is coming from. It sounds great as a talking point, but from my perspective within the system it’s not quite how things work.
This isn’t what my understanding of how the system works, but the way you word it, you seem very confident that it is. I’m honestly curious what you read that lead you to this perspective.
We have children who need help! Someone call in the “pro-life” conservatives! Don’t worry, gang, we know those God-loving righteous people will come through to solve this. Surely, they will be stumbling over each other help. Nobody talks a bigger game of saving the kids.
They’re pro-birth, not pro-life.
It’s your fault you exist, so thoughts and prayers is all they’ll give you.
Important facts for people that didn’t bother to read the article: it’s $2.1m each, so total is $4.2m. The coverage of the drug was cut on a schedule that was determined in January. The diagnosis of the disease was 5 days after the cut.
The cost isn’t an issue in my mind, but I think good to know how much the parents are in for. Insurance companies exist because of these costs, they should have to cover any treatment that has significantly higher success rates, especially when the lack of coverage will result in death, or other life-long consequences.
The timing and schedule are important as the headline makes it appear this decision was in response to these kids being born with the condition, when in fact, there was no diagnosis at the time of the cut and these kids were still months away from being born when the decision was made.
Final bit, though this wasn’t in the article, the drug is being covered for these kids. It took pressure from the state government apparently, or maybe just all the bad press. Shouldn’t change anyone’s opinion on POS insurers, but it’s at least good news that these kids aren’t condemned to a death sentence.
The cost isn’t an issue in my mind,
How is it not?
Insurance companies exist because of these costs, they should have to cover any treatment that has significantly higher success rates, especially when the lack of coverage will result in death, or other life-long consequences.
Yes, they should. But unchecked costs are a big reason why health insurance is so awful right now. We shouldn’t tolerate this price gouging by pharmaceutical companies.
And don’t tell me it’s all about R&D.
What legitimate reason would there be to price drug like that? Is that what the r&d cost to create it? Greed. Thats where 99.9% of cost issues end up for
Zolgemsma is a modified version of adeno associated virus and has to be grown under specific conditions. It costs $500k-$1m per production.. It’s also a one time injection that functionally cures the person of the disease. There are a couple other options but for comparison, the other therapeutic is Spinraza which is an intermittent intrathecal infusion which is $805,000 for the first year of therapy and $380,000 per year thereafter for the rest of your life.
To be clear, I think we should bear the actual costs of research, development, and manufacture as a society and not profiteer off the sick, but there are some contributory reasons for the price.
yeah this video was helpful to understand the complexity in manufacturing AAVs, namely the raw size of the proteins manufacturers need to create & interweave.
👆 that little dot in the lower left corner is Aspirin (timestamp 12:00)
Modern medical research targeting worldwide drug distribution is ridiculously expensive due to legislation in different countries. Gone are the days when a pharmacist could give random shit to the unsuspecting clients to see if they would survive their walk home. And I don’t think you’d want these days to come back.
Modern drugs cost tens of millions of dollars to develop at a minimum, and can easily reach into the billions.
thats less than nine months ago and insurance would have access to maternity records
Not sure how that’s relevant, can you explain a bit more about what you’re thinking? They couldn’t have been diagnosed with a need for the medication at early-stage pregnancy.
Interesting how insurance companies demand restrictions to “special enrollment” periods or specified times to begin coverage. It’s a tactic to prevent people from beginning coverage before taking on significant healthcare costs and then cancelling after their treatment is finished.
But yet, an insurance company is able to change coverage without following similar practices? Is just about as close to a bait and switch as you can get.
Where’s all the pro-life people and their wallets now?
They’re born now, they don’t matter anymore. Inside the womb: the most precious in the world. Outside the womb: fuck you, scum.
Obviously it’s the moms fault for having kids with a rare disease. Did you see her genes? She was practically begging for it.
