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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.

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.

Hootz ,

May the insurance agency burn down with all employees inside 😊

inclementimmigrant ,

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.

Soulg ,

Executives maybe but not the employees.

Hootz ,

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 😂

koavf ,

“Based”?

Admirable; praiseworthy, especially if the thing that is considered “praiseworthy” is unpopular or controversial.

Strykker ,

Sarcasm mother fucker, you don’t get it.

koavf ,

There’s no reason to be rude. See Rule 1.

Donkter ,

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.

koavf ,

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.

Soulg ,

Yes but then when someone says <clearly horrible awful thing> is based, it’s blatantly sarcasm

koavf ,

Except when it was on 4chan and it was actual Nazis just being Nazis. So no, not blatantly sarcasm.

Soulg ,

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

koavf ,

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.

Fridgeratr ,

It’s a sarcasm

koavf ,

There are already comments claiming this, thanks.

lagomorphlecture ,

How can one dose of medicine, literally any medicine, be 2 million dollars? JFC.

Hootz ,

Because capitalism and private healthcare

PopcornTin ,

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.

NotMyOldRedditName ,

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.

nickwitha_k ,

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.

www.ncbi.nlm.nih.gov/pmc/articles/PMC10148199/

NotMyOldRedditName , (edited )

Okay, so this drug costs 1 million instead of 2 million now assuming they didn’t offer any subsidy because of that, which they probably didn’t.

Edit: just to go further on the topic - if we don’t want crazy prices on these types of cures (low / single use, high research cost) they essentially need to be completely funded by the government with a clause on pricing, or simply owned by the government. But you’re going to have a hard time convincing people to vote for you when you spend 2 billion hoping for a low use cure vs working on something more widespread and impactful, even if it’s the right thing to do.

nickwitha_k ,

It would be easier if it wasn’t illegal for Federal public institutions to hold the intellectual property. As it is, even if the research is 100% tax-payer funded, and conducted exclusively through public institutions, a private company still gets to take ownership of the patent and exclusivity rights. It’s pretty disgusting.

Pretty much this meme: https://lemmy.sdf.org/pictrs/image/df2ef9db-8f58-4697-8ce8-28779ab3e96d.png

NotMyOldRedditName ,

well thats… fucked.

GiddyGap ,

Sad truth: Nothing about this will change until the boomers are gone.

invertedspear ,

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.

octopus_ink ,

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.

treatmentactiongroup.org/…/pharma-lies-people-die…

https://lemmy.ml/pictrs/image/61357539-dd43-41fa-a30d-5c96869801fd.webp

Sam_Bass ,

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

Eiim ,

Modern drugs cost tens of millions of dollars to develop at a minimum, and can easily reach into the billions.

Wiz ,

And usually subsidized with public money.

Agent641 ,

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.

Jarlsburg ,

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.

solarbabies ,
@solarbabies@lemmy.world avatar

yeah this video was helpful to understand the complexity in manufacturing AAVs, namely the raw size of the proteins manufacturers need to create & interweave.

https://lemmy.world/pictrs/image/8a922c04-207b-436a-96ce-6abd50bbc607.png

👆 that little dot in the lower left corner is Aspirin (timestamp 12:00)

Maggoty ,

Wait if that’s Aspirin then how do they get the big one inside of you? 😱

Natanael ,

Those are molecule sizes, all these molecules are still very small

Maggoty ,

Oh good. I was getting worried there…

Honytawk ,

If it costs 1 million to produce then anything above a 1.1 million cost is still pure greed.

refalo ,

There’s always more to the story isn’t there? Else it wouldn’t be called clickbait

Aux ,

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.

Fedizen ,

thats less than nine months ago and insurance would have access to maternity records

invertedspear ,

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.

Fedizen ,

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.

refalo ,

couldn’t have been

how do you know?

invertedspear ,

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.

refalo ,

so more like “unlikely” not “impossible” ?

TheDeepState ,

Did they get it?

solstice ,

Well thank god we don’t have any Death Panels from Obamacare though!

nomous ,

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.

AutistoMephisto ,
@AutistoMephisto@lemmy.world avatar

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.

PopcornTin ,

Canada just beat us to it, is all.

FlavoredButtHair ,
@FlavoredButtHair@lemmy.world avatar

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.

refalo ,

on purpose

How do you know? Wouldn’t more people around mean more money for them?

sparkle ,

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

AutistoMephisto ,
@AutistoMephisto@lemmy.world avatar

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.

Fedizen ,

this is some martin shkrelli shit. Somebody needs to go to jail

cabron_offsets ,

NP just quit avocado toast

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.

sin_free_for_00_days ,

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

Aux ,

The fuck are you smoking?

john89 ,

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?

Corkyskog ,

I am fairly confident it must be made from unicorn blood and the glandular excretions from the lochness monster.

john89 ,

Really? I thought it required catching a virgin piranha by hand in the middle of the Amazon.

They must have switched suppliers.

Aux ,

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.

Chetzemoka ,

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: treatmentactiongroup.org/…/pharma-lies-people-die…)

Jarlsburg ,

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.

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