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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.

_number8_ OP ,

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!”

thesporkeffect ,

Maybe we shouldn’t make healthcare decisions while keeping our eyes on the bottom line, wow

BastingChemina ,

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.

English summary

AnAnonymous ,

The misfortunes of some are the business of others, that’s how capitalism works, I don’t know why some people are scandalized.

Nurse_Robot ,

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?

AnAnonymous , (edited )

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.

stembolts ,

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.

AnAnonymous ,

I don’t care about down votes at all, in fact the more down voted I am the better I feel, some people still believe they are something more than numbers for the ones who pull the strings…

stembolts , (edited )

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.

AnAnonymous ,

Good luck!! 👍✌️

soba ,

the more down voted I am the better I feel

Get a load of this edgelord over here.

vrighter ,

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

dan , (edited )
@dan@upvote.au avatar

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.

exanime ,

maybe people should think about adopting other economic system

How exactly does one do that?

Cagi ,

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.

prowess2956 ,

...bad faith what now?

TheUncannyObserver ,

Bad faith laws? We don’t have anything like that in America.

herrcaptain ,

In America, the laws themselves are written in bad faith.

barsquid ,

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.

cm0002 ,

Canada: Where are your bad faith laws??

American corporations: We don’t do that here meme

SpaceBishop ,

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.

PriorityMotif ,
@PriorityMotif@lemmy.world avatar

Damages are probably capped below the cost of the drug.

exanime ,

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

tsonfeir ,
@tsonfeir@lemm.ee avatar

Explain to me how this drug costs that much to manufacture

catloaf ,

I assume it doesn’t, and that includes R&D cost that can’t be spread across a large number of other doses.

driving_crooner ,
@driving_crooner@lemmy.eco.br avatar

Bet the research was done with public funds.

Makhno ,

A lot of times it is

xmunk ,

I googled… it was.

RustyShackleford ,

At this point I’m just waiting for an uprising to start. And a reminder Democracy will die to thunderous applause in the boardrooms.

Jarlsburg ,

Zolgemsma is a modified version of adeno associated virus and has to be grown under specific conditions. It costs $500k-$1m per production.

cm0002 ,

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.

Viking_Hippie ,

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.

JoBo ,

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.

boatsnhos931 ,

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…

Jarlsburg ,

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.

brian ,

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.

Modern_medicine_isnt ,

The government doesn’t work for us, they work for business. The laws just follow.

tyrant ,

I’m not sure what’s worse, the insurance was cut or that a life saving drug is 2.1 million?!

catloaf ,

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.

Fubarberry ,
@Fubarberry@sopuli.xyz avatar

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.

Source

fine_sandy_bottom ,

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?

JoBo ,

What percentage would be right?

Given that they’re using the cost of R&D to justify their prices? A lot more than 21%.

The rest of the world gets much lower prices. That’s not out of the goodness of their hearts or the generosity of their wallets, yaknow?

fine_sandy_bottom ,

You’ve missed my point.

The percentage of total expenditure spent on R&D is not in any way indicative of the cost of R&D compared to the sale price of a given medication.

Quite simply, maybe the majority of a company’s turnover is manufacturing licensed or generic meds. No R&D required.

Does the remaining 21% equate to $2m or $2b, and how many new medications did they create with that expenditure?

JoBo ,

That’s a mind-numbingly obvious point which completely ignores the context, which is Pharma justifying their high prices based on the amount they spend on R&D.

The rest of the world gets drugs 2-3x cheaper than the US. Do you imagine they’re selling at a loss to everywhere else?

fine_sandy_bottom ,

a mind-numbingly obvious point

Yet completely lost on you ?

If a company spends $2b on research each year and after 5 years brings a new medication to market which is only useful for 1 person in every billion, how much should that company sell that medication for and how is it relevant that the company “only” spent 21% of it’s revenue on research? That company could still say that the medication is costly due to research costs and the claim would be true.

I’m not saying pharma companies aren’t shady as fuck, I’m just saying that complaining about the percentage of their revenue spent on research is absurd.

The rest of the world gets cheaper medications because the medical system in the US is just a mess.

That said, some medications are still preclusively expensive outside the US “due to research”.

JoBo ,

Good grief. You don’t need to wave your hands so wildly, this is really fucking simple maths. Expenditure which is 21% of the total cannot possibly be the reason why USians pay 2-3 times more than everywhere else for drugs.

fine_sandy_bottom ,

Sorry chief. I don’t think I can dumb it down any more for you. Good luck with that.

JoBo ,

lol

Viking_Hippie ,

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.

Spyro , (edited )

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.

Viking_Hippie ,

We are not being paid to develop drugs. We are being paid to develop new knowledge that hopefully can be useful

You know that the R in R&D stands for “research”, right? 🤦

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.”

Sounds a hell of a lot like that’s the kind of research that’s indispensable when formulating drugs.

This can give you a lead towards making a drug

Ya think? 🤦

but what we do is basically discover a possible starting point, nothing more

Sounds like you’re doing all of the research and other legwork tbh. That’s hardly just “a starting point”.

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

You mean other than how you just confirmed it while trying to disprove it?

from my perspective within the system it’s not quite how things work.

That being the perspective of living proof that you can be intelligent and simultaneously oblivious of the obvious.

Either way, pharmaceutical companies aren’t spending all their income on R&D. By far the biggest expense is advertising and after that, it’s stockholder dividends of the absolutely obscene profits they’re making on ripping off sick people.

monkeyslikebananas2 ,

Lol the guy said it himself: “I am a researcher” doesn’t understand there is an entire other part called development that also gets government funding. He works in the field and doesn’t realize that the pharmaceuticals companies “developing” drugs also get grants and tax breaks.

exanime , (edited )

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 comes from reality

Onasemnogene abeparvovec, developed by the US biotechnology startup AveXis, which was acquired by Novartis in 2018, is based on research conducted at the Institut de Myologie in France.

The Institut de Myologie in France is a nonprofit org that funds itself mostly from a yearly telethon and government funding… This would be you

Novartis Gene Therapies, until 2020 known as AveXis, is a biotechnology company that develops treatments for rare neurological genetic disorders. It was founded in Dallas, Texas, United States in 2012 by John Carbona after reorganizing a company called BioLife Cell Bank founded by David Genecov and John Harkey. Work done at Nationwide Children’s Hospital in the laboratory of Brian Kaspar was licensed to AveXis in October 2013. Unusual for the time, Nationwide Children’s Hospital, in addition to upfront and milestone payments, also took an equity position in AveXis.

The Nationwide Children’s Hospital is a nationally ranked pediatric acute care teaching hospital located in the Southern Orchards neighborhood of Columbus, Ohio. The hospital has 673 pediatric beds and is affiliated with the Ohio State University College of Medicine

See? At least in part, the money for the start up that D the drug, based on the R France publicly provides, came from the Ohio State University which also receives public funding

As always with Capitalism… Socialise the costs, privatize the profits

Ragnarok314159 ,

It’s the same for engineering.

The government funds all those small pieces of knowledge through various grants. Some are private, but most are from the government.

Then someone will take those bits of knowledge and assemble them into a new drug. 90% of the boring research is already done.

My employer pays me and my team a lot of money to develop new engineering projects based on these academic papers. Everything is cited, and normally the grad students are ecstatic to be named as contributing work. Their names don’t show up on the design patent, but if someone digs into it they can see all the work that contributed.

You might not see it at your level, and I am truly sorry for that because you deserve credit for your work.

waz ,

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.

Viking_Hippie ,

This study should be a decent starting point.

Big Pharma likes to hide behind R&D as an excuse for price-gouging American patients and exploiting monopolies, but the math just doesn’t add up,” said CSRxP Executive Director Lauren Aronson. “Big Pharma is investing more boldly in profits, advertising and corporate overhead than in researching new cures.”

barsoap ,

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”.

Jiggle_Physics ,

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.

barsoap ,

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.

Jiggle_Physics ,

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.

barsoap ,

People in the EU are fine with brand names because they aren’t drastically more expensive than generics, even at US generic prices.

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 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.

…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.

ColeSloth ,

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.

You999 ,

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.

barsoap ,

[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.

You999 ,

…senate.gov/…/Senate Ltr to FDA_Zolgensma Data Is…

barsoap ,

“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.

originalucifer ,
@originalucifer@moist.catsweat.com avatar

health insurance companies only profit when humans directly suffer.

we let this happen daily.

PopcornPrincess , (edited )

Here’s their GoFundMe

Edit: see below, SomeoneElse is correct.

SomeoneElse ,

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.

PopcornPrincess ,

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.

SomeoneElse ,

Still shows as donations disabled to me.No doubt that $400k will be sorely needed despite the boys getting the drugs covered.

PopcornPrincess ,

Thank you, you’re right.

sin_free_for_00_days ,

Novartis is another shit-stain-of-humanity drug company. Fuck Novartis.

Aux ,

The fuck are you smoking?

unreasonabro ,

Something else needs cut, apparently.

SpaceBishop ,

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.

RememberTheApollo_ ,

They’re pro-birth, not pro-life.

It’s your fault you exist, so thoughts and prayers is all they’ll give you.

Lemminary ,

thoughts and prayers is all they’ll give you

I wish that was a joke.

Cosmonauticus ,

You guys are getting thoughts and prayers?

Nom ,

Someone check the Thoughts and prayers counter, it must be raking in lots of pro-lifer support by now.

kumatomic ,

Where’s all the pro-life people and their wallets now?

cordlesslamp ,

making it rain at Trump’s rally.

Lemminary ,

They’re born now, they don’t matter anymore. Inside the womb: the most precious in the world. Outside the womb: fuck you, scum.

JasonDJ ,

Obviously it’s the moms fault for having kids with a rare disease. Did you see her genes? She was practically begging for it.

rusticus ,

Too much avocado toast

SouthEndSunset ,

The American healthcare industry is the envy of the world.

drcabbage ,

You misspelled “pity”

kerrypacker ,

As an Australian the only thing I envy about the US is the Mexican food there.

exanime ,

“mexican” food… It’s tex-mex, tasty but a far cry from the real thing

theherk ,

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.

exanime ,

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

theherk ,

Why do you assume that? Why would it not make sense to mean Mexican food when saying Mexican food.

exanime ,

I thought it weird otherwise… Like some saying they love going to France for the fantastic Italian cuisine…

nutsack ,

You’re being downloaded but this is true. You won’t find a burrito in Mexico City.

Th3D3k0y ,

mr.mercadoroma.com This place has Burritos

xkforce , (edited )

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.

nutsack ,

yea that’s what he said

MisterNeon ,
@MisterNeon@lemmy.world avatar

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.

nutsack ,

it’s made for tourists just like cheeseburger

MisterNeon ,
@MisterNeon@lemmy.world avatar

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.

OhStopYellingAtMe ,
@OhStopYellingAtMe@lemmy.world avatar

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.

phoenixz ,

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

JasonDJ ,

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.

phoenixz ,

Yeah but that is pretty much what I’m saying. The game is fucked. The players like these insurrance companies are fucked but that is mostly because the game is fucked.

Government needs to change the rules, but good luck with that.

lolcatnip ,

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.

Aux ,

What revenue are talking about?

OhStopYellingAtMe ,
@OhStopYellingAtMe@lemmy.world avatar

Revenue is probably the wrong word. “Stock Price” or “value” or whatever. You know what I mean though.

Aux ,

No, I don’t know what you mean. Because you’re clearly confusing what insurers do and what pharmas do.

OhStopYellingAtMe ,
@OhStopYellingAtMe@lemmy.world avatar

Wait, so Insurance companies aren’t publicly traded companies with stockholders? Dropping a covered drug so they wouldn’t have to pay out isn’t protecting their stock price? Maybe I am confused.

Aux ,

What are you even talking about? You are confused, mate.

OhStopYellingAtMe ,
@OhStopYellingAtMe@lemmy.world avatar

I don’t think you understand how American health insurance companies work.

MenacingPerson ,

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?

You999 ,

Definitely not because Novartis is trying to recoup the 8.7 billion they spent on AveXis to acquire Zolgensma…

lolcatnip ,

And denying it to people who desperately need it but don’t have that kind of money is helping them recoup the costs how?

You999 ,

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.

Liz , (edited )

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:

  1. 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.
  2. 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.
  3. 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?”

AeonFelis ,
  1. FDA regulations. Specifically - the insane amounts of tests and trials required to approve a drug.
Zannsolo ,

You mean the part where we make sure medicine is actually medicine.

Esqplorer ,

Yeah, don’t assume they were saying that’s unnecessary, just that it is expensive.

AeonFelis , (edited )

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.

Mirshe ,

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).

Liz ,

Zantac? No shit? Well I’m sure glad all those zantac commercials I used to see didn’t work on me!

AeonFelis ,

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.

ILikeBoobies ,

This talks about it

canada.ca/…/National-Strategy-High-Cost-Drugs-eng…

But it’s not really of any value because it basically says “we don’t know” and it’s not only Canada

state_electrician ,

From www.drugs.com/…/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.

citrusface ,

"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
Odd_so_Star_so_Odd ,

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…

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