I'm not sure what's worse, the insurance was cut or that a life saving drug is 2.1 million?!
this post was submitted on 05 May 2024
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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.
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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.
thoughts and prayers is all they’ll give you
I wish that was a joke.
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Someone check the Thoughts and prayers counter, it must be raking in lots of pro-lifer support by now.
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.
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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.
The government doesn't work for us, they work for business. The laws just follow.
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.
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making it rain at Trump's rally.
What are the bad faith laws in the US like? In my province (BC) here in Canada the courts would publicly flay you for such blatant bad faith coverage. When I worked in insurance we had regular seminars with the lawyers on bad faith; the punitive damages can be (intentionally) ruinous to insurers.
If we had bad faith laws the insurance CEOs wouldn't be able to buy as many yachts, so we don't have that sort of thing. Some states have laws against surprise out-of-network billing and that is seen as a miraculous blessing.
Canada: Where are your bad faith laws??
American corporations: We don't do that here meme
Bad faith laws? We don’t have anything like that in America.
In America, the laws themselves are written in bad faith.
...bad faith what now?
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What’s most pathetic is the scale. $2.1 million may seem like a lot for a single use drug, but that $2.1 mil loss dissipated out to shareholders probably isn’t so much. I don’t have the exact numbers but I’ll bet the loss of revenue isn’t even a blip to the average shareholder income.
They’re killing newborns based for what amounts to nothing to them. It’s sick.
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Nother example of how much care for babies exists after theyre born
Your life ain't worth a thing until you make money for the rich.
The life of patients is such a joke to pharma companies that the one that distributes this drug (Novartis) thought it would be ethical to "donate" doses through a literal lottery system.
I do that and my life still isn't worth anything to them
Your life will never mean ANYTHING to the rich
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In a statement, Chief Executive Officer Mike Poore told KCTV5:
“Global pharmaceutical companies are putting profitability over affordability, making it impossible for employers like our hospital system to bear the financial burden of these exorbitant drug prices.
In January 2024, Mosaic’s Health Care Trustees made the gut-wrenching decision not to cover expensive gene therapy used to treat ultra-rare diseases. Covering these treatments could cripple the financial viability of our health system, directly impacting our more than 4,000 employees and the approximately 270,000 people who rely on the health care we provide in small communities across four states.
We are working hard to help find alternative solutions and financial resources to help in this case. Bottom line: Families should not have to focus on the astronomical costs imposed by drug companies, but instead should be able to focus on the care of their children in a medical crisis.”
wow it's almost like it's a shitty fucking system and you're very much a part of it.
from his linkedin:
"Mike is one of the finest men with whom I have ever worked. He relates well to and inspires his employees. He demands high quality while keeping his eye firmly on the bottom line. I would follow him anywhere!"
Maybe we shouldn't make healthcare decisions while keeping our eyes on the bottom line, wow
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Why does the medicine cost 2.1 million in the first place? Is it just price inflation or it's made of antimatter or something?
From https://www.drugs.com/medical-answers/zolgensma-expensive-3552644/
Zolgensma is a one-time-only gene therapy treatment for children aged less than two years with spinal muscular atrophy (SMA) that costs $2.1 million for the single treatment. The reason Zolgensma is so expensive is because that is the price Novartis has decided it is worth because it “dramatically transforms the lives of families affected by this devastating disease” and the claimed cost of bringing new drugs to market. But this price is not without controversy. For a start, the early development of Zolgensma was financed by the National Institutes of Health and several charities devoted to finding treatments for SMA, including many U.S. charities such as Sophia’s Cure, Cure SMA, Getty Owl Foundation, Fighting SMA, Jadon’s Hope Foundation, the Gwendolyn Strong Foundation, and Miracle for Madison. Many of these charities use donations by patient families and friends to subsidize research and clinical trials into new medicines for SMA. The CEO of Novartis, Vas Narasimhan, argues that gene therapies represent a medical breakthrough in the way that they offer hope of a cure for deadly genetic diseases with a single dose. In some cases, the alternative is a multi-dose treatment with incremental improvements. For example, an alternative to Zolgensma is Spinraza that is taken four times a year for life. The list price is $750,000 for the first year and then $350,000 per year after that, so about $4 million a decade. But how do they calculate the actual cost? Many companies use a value-based pricing model which calculates the cost based on how many years of life gained as well as taking into account the effectiveness of the drug. But this means putting a price on how much a life is worth, as well as ensuring the company makes a reasonable margin on their investment. Little is disclosed about the true cost of bringing a new drug to market, and Novartis didn’t develop Zolgensma but acquired it through the $8.7 billion purchase of US firm AveXis.
So there is no tangible reason why it's this expensive.
"Because we said so and if you don't want your kid to be a fucked up cripple loser you'll fucking pay us, bitch."
- Novartis
I have no fucking clue about this particular medicine, and Americans are getting an absolutely raw deal on healthcare
BUT
Non-greedy reasons that can raise the price of a drug:
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manufacturing costs. Maybe the ingredients are expensive. Maybe the synthesis has a very low yield. Maybe storage is very expensive. Maybe storage is such a bitch the drug needs to be made on-demand. Maybe storage is straight-up impossible so the drug needs to be made on-site.
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Low demand. If very few people need the drug, you can't spread out the cost of R&D or manufacture. Furthermore, it'll force you to use low-volume manufacturing methods, which will be more expensive. It might be so low volume that you literally just pay a chemist to synthesize the drug on a bench top, which could take weeks of labor, depending on the synthesis.
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delivery mechanism. Suppose the drug itself is relatively cheap, but it needs to be delivered by a long-term release capsule implanted in your spleen. Suppose it needs to be delivered by IV drip continuously for a week. Suppose it needs to be taken under direct supervision for some reason.
Probably other shit, it's been a while since I studied where healthcare costs come from.
Edit: lol, sounds like the justification the pharma company is going with is "fuck you, is not a child's life worth everything you've got?"
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health insurance companies only profit when humans directly suffer.
we let this happen daily.
The American healthcare industry is the envy of the world.
As an Australian the only thing I envy about the US is the Mexican food there.
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We need medicare for all so that this doesn't happen.
But then people who don't look like me will get healthcare 😱
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This is how we PROTECT BABIES!
How can one dose of medicine, literally any medicine, be 2 million dollars? JFC.
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Too bad, they are already born, otherwise this will be murder. -- Some Republican probably
this is some martin shkrelli shit. Somebody needs to go to jail
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