Two newborn twins need a one-dose treatment that would save their lives: Zolgensma, a $2.1M drug. Insurance (also the mother's employer) cut coverage of the drug the day after they were born.
Two newborn twins need a one-dose treatment that would save their lives: Zolgensma, a $2.1M drug. Insurance (also the mother's employer) cut coverage of the drug the day after they were born.
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 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.
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.
You guys are getting thoughts and prayers?
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.
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.
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?
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?
What are the bad faith laws in the US like?
I read that as laws that were written in bad faith. Of those, we are bountiful.
Damages are probably capped below the cost of the drug.
What are the bad faith laws in the US like?
Like the rest of what passes as law in the USA, they probably apply to the poor but not the mighty rich pharma corps
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.
It's not a loss if nobody was going to pay that much anyway. It's like IP owner's wildly inflated claims of losses due to piracy.
I get It though. I fucking disagree with it, but I get it. They're a company playing by US rules. If they make an exception for these babiesz they'll have to make exceptions for others too. It's evil, but so is the entire "game" that's being played here. It makes people evil, so change the game
Why do they have to be exceptions? Isn't covering unexpected high costs the entire fucking point of insurance in the first place?
No. The point of insurance, as it is right now, is akin to a game of slots in a casino. You keep on swiping your card and expecting a payout on the next pull. You see someone else win big and you hope for that.
But the house always wins. If the house wasn't winning, they wouldn't be in the casino business, they'd be bankrupt.
Except in this case your forced to keep playing, because the parking garage is so damn expensive nobody could leave until they win the jackpot. But they don't tell you about how expensive the garage is until 3 weeks after you park.
Well thank god we don't have any Death Panels from Obamacare though!
They weren't really wrong about "Government Death Panels" thing they just neglected to mention that they already existed, and were staffed by MBA-executives there to make profit instead of boring government drones there to bide their time to collect a pension.
And they think they're protected by that profit motive. Because they vastly overestimate how much their health and lives are actually worth. If you break it down by the numbers, they actually lose money the longer they keep you alive. At the moment you become a loss center instead of a profit center, they deny coverage.
Canada just beat us to it, is all.
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
Well, stop being poor, problem solved.
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
For the persons interested the detailed cost vs clinical benefit for the Zolgensma done by the French national social security is public.
The conclusion is that the clinical benefits of this treatment are substantial for type1&2 so it will be reimbursed by the national social security. For the patient with the type 3 disease other treatments will be favored.
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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Shit legislation with lack of price-negotiation through collective bargaining, is the main issue, costs land at the individual enduser in the end. They could've likely gotten half the money and save the twins but instead they'll get none with that pricetag calculated from putting a number to the value of a human life - that makes most insurers pull out the fineprint and drop coverage overnight..
This talks about it
But it’s not really of any value because it basically says “we don’t know” and it’s not only Canada
health insurance companies only profit when humans directly suffer.
we let this happen daily.
Explain to me how this drug costs that much to manufacture
I assume it doesn't, and that includes R&D cost that can't be spread across a large number of other doses.
Zolgemsma is a modified version of adeno associated virus and has to be grown under specific conditions. It costs $500k-$1m per production.
While a healthy portion is, ugh, profit margin
Often with these rare diseases, if there's a cure or treatment for it often they require bespoke drugs. Sometimes with specialty equipment designed and built just for that drug (or drug family). Ofc with rare diseases, they probably only make like 5/year or some shit so they never scale well. In some cases (like if there's a short shelf life), they even make the drug on an as needed basis, further increasing cost
One of these specialty 2 mil dollar drug might still cost an actual 1 mil to make taking out profit margin/R&D recovery costs.
R&D recovery costs.
Except the r&d was funded by the government. I highly doubt that they're paying back those funds (though they definitely should), so, as usual, that excuse won't fly.
No one has given you an actual reply just assuming that the manufacturing costs for the drug are low. Zolgemsma is a modified version of adeno associated virus and has to be grown under specific conditions. It costs $500k-$1m per production.
It doesn't cost that much because the company are making a hefty profit, of course. And much more profit off it in the US as per usual, the NHS pays considerably less
The deal struck [in 2021] with Novartis Gene Therapies, secures the drug for NHS patients in England at a substantial confidential discount and paves the way for the National Institute for Health and Care Excellence (NICE) to publish draft guidance recommending treatment with Zolgensma.
The terms of the deal mean that some young children that currently fall outside the NICE recommendation criteria will also be eligible to be considered for treatment by a national multidisciplinary clinical team (MDT) made up of the country’s leading experts in the treatment of SMA.
This means as many as 80 babies and young children could potentially benefit from the life-changing gene therapy a year.
But profiteering aside, the number in the final paragraph is your answer. Up to 80 kids in the UK per year, so up to ~400 in the US, ~500 for the EU. It's not a big market but the cost of drug development doesn't get cheaper just because the number of cases is small, it gets more difficult and more costly. And there's more than one drug company chasing the market.
None of that is a defence of Pharma. But it is inevitable under capitalism. Eat the rich etc etc.
It doesn't cost that much to manufacture. The costs usually come from the time and people to research and develop this drug over years of trials playa..
We need medicare for all so that this doesn't happen.
But then people who don't look like me will get healthcare 😱
It might still be broken, needs to be paired with regulation on drug and doctor fees. I'm all for it, but it needs more so that we aren't just writing a blank check to the medical industry.
This is how we PROTECT BABIES!
How can one dose of medicine, literally any medicine, be 2 million dollars? JFC.
Because capitalism and private healthcare
These things cost billions to create. Those billions are often (or should be anyway) spread out over the millions of people who can use the drug.
When a drug is a one time cure, for something that is rare, it becomes incredibly difficult to make any money back on that unless the cost is incedibly high, or it's government subsidized.
That's why a lot of things we probably could cure aren't cured yet. It just doesn't make sense financially to do it. And if they do do it, people like you get angry at them.
This is much less of a problem in a public single payer system, but even then some of those systems don't cover these kinds of treatments.
These things cost billions to create. Those billions are often (or should be anyway) spread out over the millions of people who can use the drug.
And the US government funding was equivalent to private industry for 99% of drugs developed this century.
Cost to develop, govt red tape, number of possible customers, and of course, profit. We'd have to analyze each of these, factors weigh the results, etc.
Or we can skip that and just blame the system.
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
Here’s their GoFundMe
Edit: see below, SomeoneElse is correct.
Go fund me is paused as they got the insurers to change their minds (with pressure from Missouri lawmakers I believe). The kiddos will get the drug they need.
Something about this insurer stinks. How long does it take to drop a drug from their coverage, usually? And did they know the twins would need this drug before the mother knew? If that's the case, then her employer, who was also the insurance provider, had access to her healthcare records. They had access to all her information and likely paid her OB/GYN on the sly to tell them what was going on with the twins while in the womb.
NP just quit avocado toast
Novartis is another shit-stain-of-humanity drug company. Fuck Novartis.
The fuck are you smoking?
May the insurance agency burn down with all employees inside 😊
It's not the employees fault. I know a person who's an actuary at an insurance company, they fight for each case and every day they're depressed at how little they can do but they fight for people when and where they can. Honestly it's a testament to the fact they're still there and how much they have to compartmentalize every day, well at least until beer thirty rolls around and we used to get into a bitchfest about how shitty the health insurance system is.
Executives maybe but not the employees.
There may be collateral damage durring the executive purge, thoese who are complicit may face the AI and it's wrath.
Joking of course. It's gonna be fun to see when the AI start taking THEIR jobs though 😂
This is literally the setup for the show Leverage
Something else needs cut, apparently.
We should simply pay for research with tax money and make drug patents illegal. It still would not fix this issue. We also need some form of public insurance.
In this case, the only option is bankruptcy.
Well we already pay for research with tax money. So we got half of that going on.
Amurrrka! Land of the free!
Why is the drug so expensive? Does it have to do with patent laws, or is the actual manufacturing process ridiculously expensive?
Does it require rare materials?
Pharma companies are basing pricing for these one-time-in-a-life-dose drugs on supply and demand principles. There will never be high demand for these drugs because the conditions are so rare. And only needing to be dosed once for a complete lifetime cure means that there is no recurrent payment happening the way you would have with a drug that needed to be dosed repeatedly over a lifetime.
You'll hear all the usual excuses about "muh R&D costs 😭😭" but the truth is they're pricing it this way because they can. Because somewhere in the bible of capitalism, this is the way things work.
(R&D costs are just an excuse for greed: https://www.treatmentactiongroup.org/resources/tagline/tagline-fall-2018/pharma-lies-people-die-myth-busting-fact-sheet-on-medicine-development-and-pricing/)
I am fairly confident it must be made from unicorn blood and the glandular excretions from the lochness monster.
Really? I thought it required catching a virgin piranha by hand in the middle of the Amazon.
They must have switched suppliers.
Growing specific viruses which predictably change human DNA and don't turn you into a zombie or something, that's far more complicated than unicorn blood.
I commented this elsewhere, but to answer your question,
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.
SMA type I also is 100% fatal by year 2-3 and the baby dies without being able to even lift their head. It's a terrible prognosis.
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.
One of the earliest uses of based is by 4chan users to describe things that were Nazi adjacent or fascist that celebrities and politicians would say and do. It was "based" because the idea is that they were doing the "right" thing even though it was unpopular often doing things like being ok with needless deaths because it also meant it pushed their fascist agenda. I think op is using it ironically in this case like those 4chan cretins use it.
Since then it's been co-opted as the general Internet meme and that's how most people know it now.
It's a sarcasm
There are already comments claiming this, thanks.
Sad truth: Nothing about this will change until the boomers are gone.
The cut coverage of the drug for everybody or just the mom? There's no reason for the drug to cost this much. They do this on purpose so less lives are saved.
on purpose
How do you know? Wouldn't more people around mean more money for them?
One person, or the few people that are born with this rare disease, are probably not likely to net them an average of more than a few hundred thousand over their lifetime, even assuming they make it to adulthood
Did they get it?
“Based” isn’t the word I’d use.
The misfortunes of some are the business of others, that’s how capitalism works, I don’t know why some people are scandalized.
You don't know why people are shocked that the system they pay into for healthcare chooses not to save them? You're not shocked that we choose to kill babies?
I do but it's just how capitalism work, maybe people should think about adopting other economic system instead of complaining about unfairness, the problem it's if they have the chance they will do the same.
Complaining about how the system isn't fair and at the same time push the "greatness of capitalism" it's just a basic contradiction.