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.
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.
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.
Not diagnosed but if there were early indicators of a problem that could fit into a statistical/AI model that they had a large probability of a range of problems.
couldn’t have been
how do you know?
Because there are very few diseases and conditions that can be detected before birth, and unless they have physical development characteristics (this one doesn’t until after birth) the only way to diagnose them is an invasive procedure that it’s dangerous to the fetus so they are only done when there is a very high suspicion that there is something to detect.
so more like “unlikely” not “impossible” ?
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
Modern drugs cost tens of millions of dollars to develop at a minimum, and can easily reach into the billions.
And usually subsidized with public money.
If only there was a class of people with so much money we could tax the whole amount from them and they wouldn’t even notice.
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.
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.
There’s always more to the story isn’t there? Else it wouldn’t be called clickbait
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)
Wait if that’s Aspirin then how do they get the big one inside of you? 😱
Those are molecule sizes, all these molecules are still very small
Oh good. I was getting worried there…
If it costs 1 million to produce then anything above a 1.1 million cost is still pure greed.
We need medicare for all so that this doesn’t happen.
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.
But then people who don’t look like me will get healthcare 😱
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
Definitely not because Novartis is trying to recoup the 8.7 billion they spent on AveXis to acquire Zolgensma…
And denying it to people who desperately need it but don’t have that kind of money is helping them recoup the costs how?
Novartis isn’t the company who are denying it, that would be the insurance company Mosaic’s Health Care Trustees who aren’t covering it because it’s too expensive as stated in the article.
Insurance companies will do anything possible to get out of paying for specialty tier medications from using ‘step therapy’ where before they will approve the medication your doctor approved you must first try and fail all the available medications starting from least expensive. Insurance companies typically also charge a presentage on speciality drugs for the copay as a deterrent from being prescribed those medications. Currently the advocacy side of some large disease-focused charities such as the arthritis foundation are trying to get congress to federally ban step therapy and set a cap for specialty tier drug copays like they have for the other drug tiers.
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:
-
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.
-
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.
-
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?”
- FDA regulations. Specifically - the insane amounts of tests and trials required to approve a drug.
You mean the part where we make sure medicine is actually medicine.
Yeah, don’t assume they were saying that’s unnecessary, just that it is expensive.
I mean the part where we make sure the medicine that can potentially save your otherwise doomed life doesn’t give you a mild rash.
Historically, large-scale withdrawals of drugs from markets ONLY occur, and large-scale marketing ONLY is barred when the side effects are deemed dangerous enough to not risk at any significant percentage. If you look through the list of withdrawn drugs throughout the world, almost all of them are withdrawn for either abuse reasons, or significant side effects like organ toxicity, serious risk of overdose even inside prescriber control, carcinogenicity, or neurological reactions (like some fungicides/bactericides causing blindness/deafness even when used properly).
SOME of these have been returned to market (like thalidomide) under very strict guidelines, used for very strict reasons (thalidomide is used for leprosy and multiple myeloma treatment now in certain situations, in combination with certain drugs to help reduce teratogenicity). Others, which were formerly seen as helpful, have been removed from markets because of newly-found dangers involving them (like Zantac, which was found to spontaneously break down into a carcinogenic compound).
This is not about the cost of withdrawing or barring drugs as much as it is about the cost of running all these tests and trials. And yes, drugs can potentially have terrible side effects, but not being able to afford the drug can also have terrible results.
If the FDA requirements were much less strict, the drug company would have had to spend much less on R&D. That, of course, would not be enough to lower the price - but the other effect of cheaper R&D is that it’s easier for other companies to compete, and competition does drive prices down. The the point either the mother could either afford it herself, or the insurance wouldn’t be so stingy about paying it.
Now, of course, less strict requirements also mean we know less about the drug’s safety and efficiency. Let’s say that, because of the lack of knowledge, we assign a 50% probability for the drug to kill the patient and even if it doesn’t we only assign 50% probability for it to work (that does not mean it killed half the test subjects and failed for half of the remaining ones - just that we didn’t test enough to get significant results that say otherwise, and these are the worst case estimates under our lack of data). That means, that there is only 25% chance for each one of these twin babies to survive if they take the drug.
Which is better than the 0% they get now, being unable to afford it.
Zantac? No shit? Well I’m sure glad all those zantac commercials I used to see didn’t work on me!
-
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
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…
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.
Yes, the GFM says the account was temporarily paused since their meds got covered. However, it’s open now to donations for the boys’ future medical expenses. It sounds like a lot to deal with.
Still shows as donations disabled to me. No doubt that $400k will be sorely needed despite the boys getting the drugs covered.
Thank you, you’re right.
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.
“mexican” food… It’s tex-mex, tasty but a far cry from the real thing
deleted by creator
Close to 40 million Hispanics of Mexican descent live in the USA. You don’t think there is good Mexican cuisine there? Because in my experience, anywhere I find Mexicans, I find some damned good vittles.
I’m sure there is authentic Mexican cuisine in the USA as there is anywhere mexicans are … I’m assuming that’s not what op meant since it makes little sense
Why do you assume that? Why would it not make sense to mean Mexican food when saying Mexican food.
I thought it weird otherwise… Like some saying they love going to France for the fantastic Italian cuisine…
You’re being downloaded but this is true. You won’t find a burrito in Mexico City.
https://mr.mercadoroma.com/ This place has Burritos
Well I guess I wont go to mexico city for a burrito then. I’ve got news for you: the whole point of tex mex is that its very thoroughly americanized.
yea that’s what he said
deleted by creator
Dude I just got back from Mexico City and burritos do exist there. They consider it USA food along with cheeseburgers. Mexico isn’t static, they adopt food like everyone else.
it’s made for tourists just like cheeseburger
Nah dude, they were definitely eating it. You could get a gordita from a street vendor and falafel from a restaurant with both of them selling Coca Cola. People like foods from around the world, including Mexicans.
You misspelled “pity”
removed by mod
There’s no reason to be rude. See Rule 1.
It’s a sarcasm
There are already comments claiming this, thanks.
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.
I only know it as “I approve of this”, not “lol, I don’t approve of this, but I say I am to be hilarious”. This is the danger of adopting this Nazi Internetspeak to be funny.
Yes but then when someone says <clearly horrible awful thing> is based, it’s blatantly sarcasm
Except when it was on 4chan and it was actual Nazis just being Nazis. So no, not blatantly sarcasm.
Lol
So many people here talking about 4chan who so obviously have no fucking clue what it’s actually like and just regurgitating this idea that every person, every single thing, every comment is always bad and nazi and the worst possible version of it that it could be. It’s soooo based
No one said that it is all like that, but enough of /b/ is so gross as to taint the reputation of the entire site. Allowing some of the stuff that is on there is enough guilt by association, even if some of the other boards have better discourse.
this is some martin shkrelli shit. Somebody needs to go to jail
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.
why is proper healthcare possible anywhere except there? Capitalism is not a us specific thing, so it can’t be relevant. We have tons of counterexamples to your argument
I’m an Aussie that’s been living in the USA for 11 years, and what I’ve noticed in the US is that there’s a lot of people that mostly care about themselves (or at most, their family) rather than the community as a whole. People don’t want free and universal health care, because they don’t want their tax dollars going towards other people, because that’s “communist” and therefore bad.
I guess the thing they don’t take into account is that their own medical expenses would also go down in price with a good universal health care system.
This is also a reason why the divide between rich and poor people is significantly larger than in other countries. People that are well-off have high paying jobs, very good health insurance, a nice place to live, etc. It’s a great country for someone that’s doing well in life. On the other hand, it’s a horrible place to be if you’re down on your luck. Once you’re homeless, it’s very hard to live day to day, and recover to where you once were. Nowhere near as much support as in other countries, since again, some people don’t want their tax dollars going towards assisting others that are less fortunate.
American laws also tend to favour companies over individuals, compared to other countries where the government focuses more on individuals.
I think you’ll find if you change your framing, we are mostly agreeing with you.
Or in other words, people aren’t down voting your message, they’re down voting your delivery.
Just my opinion. Many here dislike capitalism, but they dislike callous disregard for tone more. Humans are funny like that.
removed by mod
I am not talking about points. I think that you have misinterpreted my message.
I am talking about evangelizing something you are passionate about effectively. Points are one representation of your effectiveness. If you want people to see things your way, at some point this will become important to you.
For now, I’m not sure now is the time for you to think about this. Good luck.
Good luck!! 👍✌️
the more down voted I am the better I feel
Get a load of this edgelord over here.
maybe people should think about adopting other economic system
How exactly does one do that?
This is how we PROTECT BABIES!
health insurance companies only profit when humans directly suffer.
we let this happen daily.
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?
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.
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.
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.
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.
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
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.
deleted by creator
deleted by creator
In America, the laws themselves are written in bad faith.
Damages are probably capped below the cost of the drug.
Canada: Where are your bad faith laws??
American corporations: We don’t do that here meme
…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.
deleted by creator
Something else needs cut, apparently.
