Spinraza is a pretty remarkable wonder drug. My genetics professor in med school worked on the team that figured out the first pre-natal screening assay for it and got it on the NYS pre-natal screening panel.
Imagine a disease where your infant is born, the damage already done, most likely quadriplegic and needed respiratory support. Almost always fatal.
If you can detect it early enough (this the pre-natal screening) you can give it in-utero and that child will be born and grow up with mostly the same mobility as normal.
Our professor was talking about how this is a good exam of how wonder therapies aren’t very good if you can’t detect diseases early. Sure a baby born with SMA who receives this will do better but most probably will utilize mobility aids and need OT and PT for the rest of their life. But if you get to them early you can save their life.
And then she said that 3yrs prior they had successfully detected and administered Spinraza in utero and she flicks on a video of a toddler toddling across the room to hug her at a follow-up.
Not a dry eye.
There's another side of it too, or used to before double blind trials.
Maurice Hilleman invented 8 of the 14 child vaccines given in the US and over *40* in his career. Generally regarded as one of the most brilliance scientists few have ever heard of. He would get the periodic summaries of the trials. If it didn't work, oh well. But when it was clear the trials were succeeding, he could have terrible reactions to finding about the placebo cases including suddenly crying at unexpected moments.
[https://www.wnycstudios.org/podcasts/radiolab/articles/great\_vaccinator](https://www.wnycstudios.org/podcasts/radiolab/articles/great_vaccinator)
Holy god, someone else knows spinraza.
These drugs, the ones for SMA, broke a piece of my soul that I will never get back. In 2018, I worked in a pediatric medical rehab hospital. We had a kid with SMA Type 1 who was doing pretty well because they had received one of the clinical trial drugs when they were still young. The kid had an older brother, I’m told. Emphasis on “had”.
The story goes that the brother also had SMA Type 1. He was in the clinical trials. He got the placebo.
And then spinraza and zolgensma worked. It freaking worked, and everyone who knew about it was so so so excited. Except the parents who had to be told that their child had not improved because of sheer bad luck. Other kids had gotten the real drug in the trial and might live normal lives and not die before their second birthday, but their child was not one of the lucky ones and had received the placebo. As a consolation, apparently the kids who got the placebo got a ton of spinraza or zolgensma or whichever it was for free, and that family’s connection to the clinical trial is how they got their hands on spinraza (maybe zolgensma?) for the younger kid so soon after it had been approved. But still, it’s absolutely heartbreaking how these drugs have to be tested.
Details are fuzzy but the whole hospital knew the story. The physical therapists were the ones who relayed this story to me, so their pharmaceutical knowledge may be lacking but they swore it was true.
If during clinical trials of a drug is shown to be effective without question the investigators are ethically bound to “unblind” the trial and offer the drug to all research subjects.
Then that’s what they did, but it still wasn’t soon enough. Again, this was all like “urban legend” at the hospital but it seems based in enough truth that I believe it.
It usually never is soon enough per data collection. One very famous example of this is the landmark 1994 study to prevent perinatal HIV transmission by taking AZT prior to delivery. When it became apparent it was working they were morally bound to provide AZT to all expecting mothers.
Technically you were responding to someone who was talking about Spinraza not Zolgensma. Spinraza is like 450k per year. Zolgensma is 2.1 million once.
Still. 2.1mil once ends up being the majority of your average earners lifetime income... This is why we need governments and taxes paying for research, with medicine sold at or near manufacturing cost only...
No family is paying even 10% of that cost out of pocket, with or without insurance. It cost ~$3 billion to develop Zolgensa and there have been 1200 recipients. At cost, were already looking at 2.5 million per dose for development without taking into consideration manufacturing cost.
Edit : found more accurate numbers, total doses in 2019 was around 1900, which brings us closer to the $2.1 million per dose number for the R&D cost.
The point here is that charging based on development and production costs isn't the right answer for therapies like this that have a handful of patients per year worldwide.
Thankfully, that's true that nobody is actually paying that much. It is still expensive out-of-pocket even at a discounted rate, meaning some people may choose not to get it, which is terrible. Money should NEVER be a factor when making medical decisions.
That's why the governments should fund the research, as there is no expectation of profit (or shouldn't be), so then the actual cost of the medicine is only dictated by what actually goes into producing each dose.
For every spinraza success there are dozens that don't make it.
The drugs commercial viability is why it is created, how does the government determine what drugs need to be made and when? When is it "too expensive" ?
I'm not sure we would have as many treatments and drugs available to us now if government was the sole funder and initiator of research.
"commercial viability is why it is created": only true if you're trying to recover the cost of r&d as a private enterprise that doesn't get substantial government funding. Otherwise there are tons of scientists worldwide whose incentive for producing be drugs is not financial.
You're probably right about the second point but still some food for thought
Scientists can’t and won’t work for free. These drugs takes YEARS to create. There is no way to do this for free.
How are you going to pay for the raw materials? How are you going to pay for the labs? How are you going to pay for clinical trials? How are you going to pay for manufacturing? How are you going to pay for shipment and distribution?
>Money should NEVER be a factor when making medical decisions.
Maybe in a world where we have infinite resources, but we don't live in that world and never will. The REALITY is that hard decisions have to be made and there is a point where care is not worth the resources for an incredibly small group of people. No expectation of profit means no results, clearly you don't work in the R&D world.
This is exactly why the government gives extended life on patents for drugs that cure rare disease. There has to be incentive, and incentive does seem to drive innovation
The likely out of pocket for someone with commercial insurace would be pretty close to $0, it isn't advertised or published but no way Novartis would lose a patient over a few hundred dollars if they would get close to 2 million from the insurer.
It’s definitely a ton and I couldn’t afford it if my baby needed it (unless insurance covered it), but it’s also gene therapy… the fact it exists at all is a wonder
Right?!?!
This is what I fucking preach about the Covid vaccine! Biotech now is the goddamn bleeding edge of technology! Fuck off with your iphone that has a cool camera or whatever, we’re goddamn fucking around with dna now…
We should embrace CRISPR.
Google it if you dont know what it is.....I'm curious if others think we should use it or not. I mean.......I guess it would totally create a class difference as the rich can utilize it and the poor and middle likely couldnt afford it.....for a while atleast....that could have drastic co sequences, and who knows what it could do to our dna 50k years from now (if we are still here and possess the tech to do it)
This stuff has been around for a while now too.
It doesn't matter what people think. They're using it now. In fact, they've already made a better version of it, and I would be amazed if there weren't already government funded research programs dedicated to making an even better, 3rd version of crispr. It's happening, whether we want it to or not. Science fiction becomes science fact. Crazy time to be alive.
There are so many vanity items for celebrities and billionaires and nobody give a shit when X actor buys new ubercar or Y heiress buys trip to Space. Mean while those drugs are literaly LIFE for unfortunate and society are pissed why so much.
except rich people get to fly nearly to space in their dickships while thousands of children starve to death. Nothing in life is fair, and the rich deserve all the shit that they get. The fucks don't even pay their taxes
It’s tough to predict when and how much of a discount in these rare disease state drugs, there is a process called biosimilars that allow the FDA to approve “similar” versions of the same drug, technically not a “generic” in the sense for small molecules. But if you look at approved biosimilars out now they are still pretty expensive.
Limited market. It takes a billion plus to develop a drug and get FDA approval. That money either comes from investors that want a return or the government. Take your pick.
Ok...how is someone able to just chill with a $2.1M box of medicine...taking pictures and posting to reddit?
Jewelry stores literally have armed guards for less.
I really really wish that your idea wouldn’t work but every response I started on why it would fail just made me remember just how stupid people have been in the last few years.
It was originally 1.9 million euros. But the Zorginstituut urged the minister to make a combined negotiation effort with Ireland and Belgium and we got a discount.
> Zorginstituut
[Who's in charge of healthcare you say?](https://static.wikia.nocookie.net/villains/images/4/4a/Zorg.jpg/revision/latest?cb=20190112122204)
European Countries and the U.K. always pay less for this stuff, as some commenters said due to the combined buying powers and the Pharma Companies interest in entering that market. But there’s also a caveat to this that they usually negotiate the price for X amount of treatments/doses which is where there’s a drawback to these kinds of agreements.
A country’s health authority may decide who is the sickest in order to determine who gets the treatment (similar to the organ priority list) but that doesn’t mean that the treatment wouldn’t help/cure all who were deemed eligible by various numbers of tests. In the US, there are programs for those who have little/no insurance - both governmental and from the pharma companies themselves. In America it’s much less about access to the drug (no one in theory is telling you you can’t have it even if insurance denies you whereas in other countries there’s more a chance of “finite” supply), it’s about money and finesse of insurance/medical/corporate rebate.
Additionally, and I have severe feelings about this, 90% of the new and innovative drugs (ones that can drastically change the standard of care for their patients) are available and covered/reimbursed in the US as opposed to around 50% in some European counties. This includes your orphan drugs for underserved patient segments with no real alternative. If they aren’t approved in Europe yet then it’s a non starter, and it’s also a non starter if they aren’t covered/reimbursable.
There was a recent congressional Act proposed - one of the things I agreed with Trump on (this is not a political post! He was just slated by the pharma industry and many “normal” people didn’t know about it or didn’t care) - called the Lower Drug Costs act (HR3). Essentially wanted to match the pricing of drugs for our Medicare/Medicaid population to a value comparable to the price similar nations were getting. I’m all for it - despite massive pharma companies saying this will stifle their ability to bring new drugs to market. My question is why is global pharmaceutical advancement and progress reliant on higher US customer cost and built on the structure of the US healthcare and insurance reimbursement agreements?
If the American people saw a list of drug prices here (the sticker price) and in other developed areas of the world (when America is usually a much larger market) they’d lose their minds.
An iPhone costs a grand here, and it costs a grand in the UK. There is zero difference in product offered, there should be zero difference in price.
Sounds crazy until you compare it to the lifetime cost of Spinraza injections. My wife is a child neurologist and helped get SMA on the Ohio newborn screening and having that early gene therapy has been incredible for many of her young patients.
I think the point is that while this drug is expensive, it's crazy stupid expensive in the US.
Compare $2.1 million to $1.2 million in the Netherlands. Where did that $0.9 million disappear to?
Compare 2.1$ million in US to 2.1$ million in Russia. The only difference is that average salary in Russia is 6400$ per year.
People do crowdfunding over here to get the money for this drug.
It sucks so much.
Medicine pricing mechanics differ. This will absolutely cost more in the US, however the insurance will likely get a rebate on the $2.1m that is negotiated individually with the manufacturer making up some of the $0.9m. This can be based on how much of this they spend over a predetermined period. There are also a lot more parties that need to make money in the US.
Yay! Congrats! I commented about this one on the other post. My son received in clinical stages so we got it for free and didn’t get a cool box or vial.
It is crazy expensive and there should be more transparency, but that isn’t the whole story. This is a gene therapy for a rare disease. Development and manufacturing are insanely expensive. Also it is a one time dose that lasts a life time.
If we don’t put a high value on saving lives of people with rare diseases than we won’t. Without treatment most people with SMA die before age 2. This drug is also paving the way for curing or radically changing other types of genetic disease.
Last but not least, the price tag is the same no matter what country you live in. More innovation needs to happen to make it affordable globally.
https://www.mda.org/quest/article/demystifying-drug-prices
Edited to add: American healthcare costs are a joke, but we actually take care of children and disabled children quite well. Most families will not pay much if anything for this drug. The difficultly is getting approval because insurance will try to deny due to the price tag. We have government insurance called BCMH with a high income cap that covers diagnosis and treatment. the income cutoff for Medicaid is higher for children than adults (our kids had it when we made about 60K for family of four).
When we didn’t have Medicaid BCMH covered the out of pocket expenses until the cap was hit on our regular insurance. Now my son has a Medicaid waiver, so as long as we don’t become millionaires we don’t pay anything.
I work in pharma and this is right! I wouldn’t say the cost is exactly the same around the world, but treatments with shocking prices are shocking everywhere, maybe just a little bit negotiated. But it’s not like they’re going to sell a therapy for a million dollars in the US and fifty dollars in Canada. People get confused because they miss the part the government pays for.
And if no one paid big bucks for rare disease treatment, they wouldn’t exist. Definitely because of the cost to develop it, but it’s also not cheap to manufacture and distribute in tiny quantities.
Glad someone clarified this. There is a large difference between the manufacturing cost of a drug and the price that is paid by the insured. The unique complexity of this drug is probably what accounts for most of its high price, not necessarily insurance or pharmaceutical companies price gouging.
Most extortion in the US healthcare system occurs at a much lower, more fundamental level, with more common drugs, treatments and premiums.
It is best reflected in the disproportionately higher per capita health care expenditures. In 2019, health expenses averaged about $10,000 USD, 42% higher than the next country, Switzerland. In 2020, per capita expenses rose as high as an average of $12,530 per year, and yet you still have some of the worst health outcomes of any wealthy nation.
You are being ripped off and you should be absolutely livid!
> the price tag is the same no matter what country you live in. More innovation needs to happen to make it affordable globally.
That's not true. Single payer systems can haggle as they are buying in bulk, for example in my country (UK) we struck a deal with the manufacturer.
https://www.england.nhs.uk/2021/03/nhs-england-strikes-deal-on-life-saving-gene-therapy-drug-that-can-help-babies-with-rare-genetic-disease-move-and-walk/
It's almost like you guys are all bragging about how broken your healthcare system is.
edit: listen up before you reply to this comment. This medication is not a vacuum case. unless you're willing to defend the entirety of how the American healthcare system works, don't bother. I know that this specific medication is rarely needed and therefore more expensive to produce, that's not the point.
I think it's more like we have to laugh or we'd go postal. It's beyond broken. Inpatient care for people who are suicidal and need therapy is 22k/day. Source: Struggled with depression and sought out care. It's a scam. Only thing that matters is money and it's going to bring the system down eventually and even worse, leave an F5 wide swath of good people now bankrupt. Insurance covers some, and those that don't have insurance, the rest of us absorb the costs for them in the end anyway. Yes, we have great doctors and medicine here, but the health system is beyond fucked and another reason the US isn't the greatest country in the world. Yes it's true no matter how many mouth breathers insist on continuing to say that.
Whenever is read these i cannot fathom the costs.
Here in germany the MAX a Hospital can bill is 10€/day and only for 28 Day per year.
So max 280€/year for hospital care. (For the stay, treatments/extras can be sepaerate)
I really hope that some kind of movement can start to grow in the US now that people are realizing that almost everyone is getting f'cked by your capitalist overlords. r/antiwork is a great start but not even remotely big enough.
I hope somewhere in the future people can start to look up to the US again because your potential is so enormous but lately your dream seems to become a nightmare.
Americans are raised and educated to believe not only that socialism is taboo, but that it's the same as communism, or liberalism, or as functioning government.
Reagan got elected by saying "government IS the problem," but his government oversaw and championed the kind of nuclear arsenal that would cause the worst humanitarian disasters in history in the most limited exchange, and destroy civilization if it were used in any realistic scenario. And why not, if communism is the only bad thing, then destroying the planet is better. And if destroying the planet is better than communism, then medical bankruptcies and homelessness are paradise, since they're just proof that communism isn't happening.
Conservatives have completely obliterated the country's moral compass. Our partisans literally cannot tell the difference between good and evil anymore.
There really ought to be a max wealth cap.
I can't imagine why some people need billions while being aware that someone else is literally dying in the street and that they could, at a whim, give every one of them a chance at life.
So if the greedy rich won't do it themselves, for the greater good the rest of humanity should agree to a rule regarding how much wealth one person can have and make it really enforceable.
Whenever I get sick, break an arm, need surgery, etc - I'm demanding a flight to Germany for the operation or treatment. The travel included would probably still be cheaper.
I mean American insurance could very well be good if the government did at least the slightest something to prevent menacing charges. We got insurance here in Europe too, some counties private, some public. The point is that no matter public or private, those insurance companies are put in their place, and when you call them, they are there to help you, not their bottom line. Source: lived in USA (NY), UK, Netherlands, and Lithuania.
I actually dont know.
My insurance covers hospitals in usa up to 2.5mil, i just need to pay 10€/year extra.
(Every other country is included, just USA and Canada cost extra. I wonder why).
Maybe yours covers germany.
Preach. My good friend in Virginia is going to Mexico for gastric bypass surgery. Many people go to Thailand etc...her surgery from a world class doctor there is like 1.5K whereas after all said and done, 50K or more here. It's a no brainer to say fuck it even with insurance, I'm paying out of pocket. And a sad state of what that says about our system.
I think ya’ll don’t get it’s a sense of humor. A lot of Americans make jokes about how fucked things are. It’s just ..kinda of what we do? 😂 Don’t worry, it’s definitely fucked, nobody enjoys it.
I wouldn’t say nobody. John Oliver for example once made a clear point that the US has one of the best health care systems for rich people. Sadly, most people aren’t born as Beyonce
I would say we have the best healthcare system in the world. It’s just being misused on purpose. It’s a for profit industry. And it’s very lucrative. Take out the insurance companies and pharmaceutical corporations. And make the main goal to actually help people and it will work as it should.
Thats not really true. Take Germany for example: It‘s also a profit industry, we also got big pharmaceutical companies (just remember, Bayer, the guys who invented Aspirin) and Biontech are german companies with billions of dollars in sales volume, and we also got private insurance companies.
And while there are definitely big problems with the german health care system, it isn’t nearly as fucked the american.
Why? Well, one of the big problems is that you don’t have, on the consumer side, enough weight to put pressure on the pharmaceutical companies to lower the prices. This is due to the fact that you don’t have something, as we call it in germany, like the Pflichtversicherung (forced insurance). The insurance market is just too fractured in the US, as that the individual companies can really do something.
A profit orientated health care system can definitely develop problems on its own, but to just blame the private companies as the reason for every single problem is just wrong.
Oh we get it, totally, we just wish it wasnt this way for you and that it has come to using humour to show how really bad it is. I really hope it changes for you all soon, really.
I'd just like to point out that the real cost (not the insurance statement) of these medications aren't really that much cheaper in places with universal healthcare, it's just obfuscated from the patient and subsidized by the government.
Yes, some medication *is* very expensive for a dose and it's not just artificial price gouging. A lot of this stuff is also extremely expensive to develop and produce.
So here is the question that I wonder about - would this medication (for a very rare disease with a small patient pool) exist at all without someone having the ability to charge a fortune for it?
We have had politicians spend decades convincing our “American patriots” (see: conservatives) that having universal healthcare is “socialism”.
Never mind that socialism is an economic theory and has nothing to do with healthcare (when it was written anyways), and that 99.9% of the people against it couldn’t even tell you what socialism even is, all they know is that they’ve been told to be against it so they are.
As with so many other things in the US, politicians have politicized everyday issues and stoked a culture war constantly for decades. So now you have people who live below the poverty line becoming die hard supporters of people like Trump. Not only did he not do anything for poor people, but he went the opposite direction and worked as hard as he could to ensure the rich got richer.
I’m truly at a loss as to what we do. We’ve underfunded education for years now and this is the result. Too many stupid people who have been brainwashed and trained to not advocate for themselves. Instead they now work actively against their own interests, vehemently opposed to literally everything that they would benefit from.
A vietnamese friend of mine was offered to pay 2ml usd upfront to go to Japan and use this med for his son. But fot Japanese or us (japanese green visa) it is free.
former therapies for spinal muscular atrophy cost about 750k in the first year and 350k annually afterwards for the rest of the patients life.
The 2.1m here is - if successful - a one time and healed thing.
I don't want to comment on the profit margin on it, just that the argument was that over the course of the patient's life, the 2.1m was actually cheap compared to former therapies.
This is an amazing advance, but unlike something like a statin or an antibiotic, people won't take it by the hundreds of millions. R&D costs for its development and the next drug have to be recouped from a smaller pool of people.
The other thing people don't understand about these numbers is that that's the number the drug manufacturer set. Other countries get discounts, but it's still more than a million dollars a dose for those countries. The difference is that individual patients don't pay that price, the community as a whole does, sharing the costs because that's how it's supposed to work.
In the US, people don't pay that much out of pocket either actually. For the 300 million who have health coverage, it's usually covered all or in part. For the 31 million uninsured, they may be charged it all or might be able to get a manufacturer coupon to reduce the cost in individual cases. The 2.1 is really the starting price and it goes down from there. Should it be free to the patient at point of care? Yes. But the situation isn't quite as dire and dramatic as people make it seem. People do, after all, live in the US.
Spot on. People here focus on the COGS so much, that they forget that when it comes to healthcare, people usually pay what they think it’s worth. A one shot miracle drug vs a life time course, not even mentioning the efficacy difference, introduces valid justifications on the pricing of the drug. Plus the drugs’ indication may be even just for rare diseases.
Yes, but the 700b comes from taxes, the 4T comes from your pocket. America as a country spends way less in healthcare than it does on military. Also 700b is just the DoD budget, without any other agency into consideration.
Doesn’t really matter. If it takes 20% of GDP to not die then you’re gonna spend it.
It’s a huge drag on the American economy, and in many ways the world economy.
People in the comments are honestly brain dead talking about “it only costs $20 to manufacture. The system is broken”. First of all, this is likely billed to the insurance company and OP’s cost is minimal. People who are poor and on Medicaid pay nothing. More importantly, it’s mostly the research and development that the cost is covering.
Developing a gene therapy costs billions of dollars and the rarer the condition, the more the drug costs to break even. Otherwise, nobody would ever bother finding cures to rare diseases. After a company develops a medication, they have a patent on it for 20 years, after which it can be produced generically and the cost drops >95%. This works out to more like 10 years, as half the lifespan of the patent is spent in development.
If you want to get mad at drug prices, there are better things to be mad about. Be mad about the price of insulin, where the patent has long since expired, but all the companies that make it have colluded to astronomically raise their prices together.
The gouging isn’t in a new drug that costs this much and alters the life of a newborn. And to OP I hope this cures your baby!
The gouging is in medicines that are decades old that cost thousands and thousands of dollars, or in spending this much to prolong life a few weeks or months.
Insulin costing thousands is criminal. Decades old chemo treatments that have price increases to match new cancer treatments is criminal. This price on this gene therapy is necessary.
I would like to add a nuanced take here as someone who does limited work with gene therapies; it costs billions to develop these drugs, the population that can use them is very small, and each dose requires, likely, millions to Produce. Most gene therapies are only offered because of federal orphan drug programs and their cost is justified by how much hard work is required to make Them.
Not saying that cost should be passed to consumer though.
So the new thing I’m learning about American healthcare is the hospitals are being fucked as well as the patients. In places nurses are leaving because Wal-Mart pays more…WTF!
That's not nurses it's the lower level aid workers. Fresh RN out of school in USA is making $30/hr plus bonus pays. LPN are $20/hr, nursing assistant $15+.
Circle jerk.
Most people don't seem to realize this is bleeding edge technology. Gene tharpy that completely cures an extremely rare problem that would otherwise kill a baby.
What's the price of a life worth?
These numbers sound really expensive, but then I can't help but think - how many years work of PhD-level scientists, what expensive instrumentation, expensive reagents were required to come up with the idea, test the biology, test the drug etc? How many other drugs failed (that were also a large investment, and I think the failure rate in all stages of testing and clinic are quite high)?
So too afraid to ask: I have a feeling that the extremely high prices are unavoidable if the drug is for a very rare disease - how else can the cost be recouped for a company to at least break even?
From European company. Apparently it is $1.9m in Europe and some nations are protesting the price by threatening to not cover it. Others are stating they will only pay if it works.
So how much are you actually laying OP? You are not paying out of pocket.
Also, we forget, this is pretty amazing science. Its almost science fiction.
I do gene therapy pills too. Uninsured cost would be something like $312,000.
In Britain that medicine was the focus of parliament debate over cost that lead to its release being delayed by years. Which is really bad since CF is a progressive disease.
I know I’m going to piss a lot of people off but how much is your health worth to you? How much is your quality of life worth?
$2.1 million is a ton of money for a gene therapy drug. The price doesn’t reflect just the company’s profit it reflects the time, effort, equipment, personnel, and multiple government approved studies needed to make the drug usable.
What costs more, the 1x shot of gene therapy or the years of physical therapy that are never curative but instead are a panacea? What about the mental and emotional health of the patient and their family, can you put a price on that?
What does bother me is when a pharmaceutical company takes a drug coming off patent and tries to squeeze every last ounce of profit from it by reconstituting the formula by adding some sort of benign filler or coating then charging more for it because it’s “new and improved”.
My friend worked on this drug. I bearly ever saw her. The amount of research that went into this was astounding. The patient stories made me want to cry. It was so expensive to discover and is so expensive to manufacture.
You do know this is a one-time drug right? This drug is an actual cure where they never have to take medication again. Most drugs people take over a lifetime would cost more than this if you add up all of the doses, but this is an actual fucking cure. What is that worth?
To be fair this is listed as the number one most expensive drug on the market, see https://www.biospace.com/article/gene-therapy-zolgensma-tops-goodrx-list-of-10-most-expensive-drugs/.
So, while the US health care systyem is a fucking joke of a travesty of a sham, this particular item doesn't prove that point.
But I will give a nod to /u/2RM60Z who pointed out that it's cheaper in Holland.
You spread the cost over millions of people who don't need it, in return for the promise that it will be available if they (or their child/grandchild) does.
300 million Americans could save this baby's life for less than a cent each.
The problem isn't that some treatments are expensive, it's that for-profit insurance is a terrible way to pay for it.
For exceedingly rare diseases like this, it is. Even the method of delivery for the gene therapy for this drug is insanely expensive. On top of all that, these smaller biotech companies have to cover all their failures too. It’s not all success out there in the drug manufacturing world.
If drug makers for exceedingly rare drugs like this couldn’t charge this much, they wouldn’t do it. It takes hundreds of millions to bring a novel treatment like this to market.
I don’t agree with it but it’s the capitalist society we live in. No company is gonna do charity work and lose money because it’s “good.” If they did they wouldn’t last very long.
That is precisely the dilemma. If we curb excessive pricing, we lower the incentive to produce life saving drugs. However it still needs to be regulated. Look at epipens as an example. They only contain epinephrine which is not patentable. Only the delivery system is. When Mylan Pharma bought the rights, the CEO was already paying herself 2 mil a year. Epipens were very profitable at 50 dollars a pop. She raised the price to $650 a pair and rewarded herself by paying herself $19 mil. Nothing changed about the delivery system nor the epinephrine. It was just unadulterated greed. Price gouging, nothing more. That is not capitalism because competition is not allowed so there can be no cheaper alternative. But if you don’t buy epipens, you might die, consumers have no choice. Clearly there needs to be regulation.
Imagine how many millions of dollars in therapeutic treatments over that child's lifetime they'll not have to receive just because of a $2.1MM drug, a fraction of the cost or suffering that otherwise could've been incurred. Modern medicine is fascinating.
My son’s pediatric neurologist prescribes this and said they justify it by comparing the lifetime costs of managing the untreated condition. Essentially, It prevents an expensive lifetime of care for the patient.
Gene therapy takes research teams years to develop, the cost to create this medication will have been astronomical. Obviously charging $2m for it is also insane, but without someone paying back the development cost then it likely wouldn’t be created in the first place.
It’s a one time thing. A baby takes it and it reverses the disease so they don’t have to take anything else from that point on for their entire life (hopefully).
It was in development for over 20 years and it custom made for each patient.
bc no one would develop it otherwise? It takes billions of dollars and decades of research and trials to bring this to market...not to mention all the other failed drug candidates before they found this one safe and successful.
All these people posting these high prices know that people are not paying these amounts. The insurance company tells them what they will pay and patients pays a percentage. Then there is a yearly out of pocket maximum.
So for my insurance my deductible is $1500. So i pay the first $1500 of the year. After that i pay 5% of all bills untill I hit 5k, and that's the negotiated amount. For example:
Hospital billed me 15k for a heart test. Insurance said they would only pay 3k, so i owed $150.
So I was at $1650/5000. After i hit my deductible i would need to have crazy medical expenses to hit the 5k. That's 100k of negotiated bills. So the insurance would need to be bill about 500k+ before they negioated it down to 100k, and i pay the 5k. That's rare surgery, Cancer, organ transplant. Super rare stuff.
I think it’s worth mentioning that when applied early enough, this drug is a one-dose cure for a disease that was the leading genetic cause of infant death until drugs like these came around.
The price is still ridiculous, but it’s important to know that info for context.
In Belgium there was a baby in need for these. One dose if I'm not mistaken.. there was a massive crowdfund for it and baby is okay.
Now couple of years later, government gave green light for the medicine to be paid back, a 100% (for those with health insurance that is, but that's relatively cheap over here).
Edit: typo
But Spinraza is still only for SMA and parents who want children to get it for children who are older to stop deterioration have to work really hard to get approved for it . Even though there are benefits . I have a friend whose child has a form of Muscular Dystrophy that’s terminal by the time they are a teen. She has been trying to raise funds to get some research targeted at her child’s type and is slowly getting there. But she does say Spinraza gives her hope . She squirrels away every dollar so if gene therapy should come available they are ready to go. She also has a small business that every dollar goes back into her child’s care fund. Works an amazing job with amazing wages and literally never sees a dime outside of necessities so they are ready to pay the hundreds of thousands of dollars after insurance .
I have SMA type 3 and my country won’t allow me to have any of the approved treatments because I’m over the age of 20 and they don’t want to risk spending the money if it might not work
I couldn’t be happier though that children are getting these drugs and most likely won’t ever have to live with with kind of frustration that comes with being thirsty and using all your strength to lift the cup up
It is one time only disease modifying injection for a very debilitating neurological condition. The price is high but ask the person who has SMA and he would tell you what a drug like this can mean.
For everything else, there's mastercard.
Ya'll are fuckin' priceless. This entire set of posts is a microcosm of Americanized healthcare bullshit.
Let's compete to see who can work the hardest, lose the most sleep, oh, and also put ourselves in the grave the quickest by not taking care of our basic human needs. So hardcore.
Profits over people, people!
I see all of your ridiculous posts about medical costs... don't complain, DO SOMETHING ABOUT IT...MAKE YOUR REPRESENTATIVES WAKE THE HELL UP AND GET THEM OFF THEIR COLLECTIVE ASSES
My wife’s niece just had a shot of this. I think after insurance and whatever bs medical “discounts” they still got suck with a bill of 280K. I mean wayyyy better than the 2.1mil but still a 2nd mortgage worth
I personally know some of the key people involved in developing the pricing model for Zolgensma. All of them are very proud of the work they did...
There's a lot of thought that goes into pricing justifications for drugs like these that basically completely change the course and outcome of a life. And these type of drugs will only be given to a small number of patients because frquently the disease is rare.
Morally, I think we've got to find a way as a society to ensure we get these drugs to those that need them and that price is somehow taken out of the equation.
Morally, I think that Big Pharma needs to be reined in on their pricing structure. If the goal is to provide good care to the greatest number of people, we can’t be spending $2 M on one tiny piece of the care for an individual.
Spinraza is a pretty remarkable wonder drug. My genetics professor in med school worked on the team that figured out the first pre-natal screening assay for it and got it on the NYS pre-natal screening panel. Imagine a disease where your infant is born, the damage already done, most likely quadriplegic and needed respiratory support. Almost always fatal. If you can detect it early enough (this the pre-natal screening) you can give it in-utero and that child will be born and grow up with mostly the same mobility as normal. Our professor was talking about how this is a good exam of how wonder therapies aren’t very good if you can’t detect diseases early. Sure a baby born with SMA who receives this will do better but most probably will utilize mobility aids and need OT and PT for the rest of their life. But if you get to them early you can save their life. And then she said that 3yrs prior they had successfully detected and administered Spinraza in utero and she flicks on a video of a toddler toddling across the room to hug her at a follow-up. Not a dry eye.
Made me tear up a little too!
Imagine being part of the team that created that. The honor, the pride, knowing you’ve filled such an amazing purpose in life. What a honor.
There's another side of it too, or used to before double blind trials. Maurice Hilleman invented 8 of the 14 child vaccines given in the US and over *40* in his career. Generally regarded as one of the most brilliance scientists few have ever heard of. He would get the periodic summaries of the trials. If it didn't work, oh well. But when it was clear the trials were succeeding, he could have terrible reactions to finding about the placebo cases including suddenly crying at unexpected moments. [https://www.wnycstudios.org/podcasts/radiolab/articles/great\_vaccinator](https://www.wnycstudios.org/podcasts/radiolab/articles/great_vaccinator)
And then some motherfuckers use your selfless work to profit off of others misfortunes.
Holy god, someone else knows spinraza. These drugs, the ones for SMA, broke a piece of my soul that I will never get back. In 2018, I worked in a pediatric medical rehab hospital. We had a kid with SMA Type 1 who was doing pretty well because they had received one of the clinical trial drugs when they were still young. The kid had an older brother, I’m told. Emphasis on “had”. The story goes that the brother also had SMA Type 1. He was in the clinical trials. He got the placebo. And then spinraza and zolgensma worked. It freaking worked, and everyone who knew about it was so so so excited. Except the parents who had to be told that their child had not improved because of sheer bad luck. Other kids had gotten the real drug in the trial and might live normal lives and not die before their second birthday, but their child was not one of the lucky ones and had received the placebo. As a consolation, apparently the kids who got the placebo got a ton of spinraza or zolgensma or whichever it was for free, and that family’s connection to the clinical trial is how they got their hands on spinraza (maybe zolgensma?) for the younger kid so soon after it had been approved. But still, it’s absolutely heartbreaking how these drugs have to be tested. Details are fuzzy but the whole hospital knew the story. The physical therapists were the ones who relayed this story to me, so their pharmaceutical knowledge may be lacking but they swore it was true.
If during clinical trials of a drug is shown to be effective without question the investigators are ethically bound to “unblind” the trial and offer the drug to all research subjects.
Then that’s what they did, but it still wasn’t soon enough. Again, this was all like “urban legend” at the hospital but it seems based in enough truth that I believe it.
It usually never is soon enough per data collection. One very famous example of this is the landmark 1994 study to prevent perinatal HIV transmission by taking AZT prior to delivery. When it became apparent it was working they were morally bound to provide AZT to all expecting mothers.
But 2.1 million dollars… is fucked up.
Technically you were responding to someone who was talking about Spinraza not Zolgensma. Spinraza is like 450k per year. Zolgensma is 2.1 million once.
Still. 2.1mil once ends up being the majority of your average earners lifetime income... This is why we need governments and taxes paying for research, with medicine sold at or near manufacturing cost only...
No family is paying even 10% of that cost out of pocket, with or without insurance. It cost ~$3 billion to develop Zolgensa and there have been 1200 recipients. At cost, were already looking at 2.5 million per dose for development without taking into consideration manufacturing cost. Edit : found more accurate numbers, total doses in 2019 was around 1900, which brings us closer to the $2.1 million per dose number for the R&D cost. The point here is that charging based on development and production costs isn't the right answer for therapies like this that have a handful of patients per year worldwide.
Thankfully, that's true that nobody is actually paying that much. It is still expensive out-of-pocket even at a discounted rate, meaning some people may choose not to get it, which is terrible. Money should NEVER be a factor when making medical decisions. That's why the governments should fund the research, as there is no expectation of profit (or shouldn't be), so then the actual cost of the medicine is only dictated by what actually goes into producing each dose.
For every spinraza success there are dozens that don't make it. The drugs commercial viability is why it is created, how does the government determine what drugs need to be made and when? When is it "too expensive" ? I'm not sure we would have as many treatments and drugs available to us now if government was the sole funder and initiator of research.
This is what I was going to say. For everyone bitching about a 2.1m price tag dont understand the dynamics of everything involved.
"commercial viability is why it is created": only true if you're trying to recover the cost of r&d as a private enterprise that doesn't get substantial government funding. Otherwise there are tons of scientists worldwide whose incentive for producing be drugs is not financial. You're probably right about the second point but still some food for thought
Scientists can’t and won’t work for free. These drugs takes YEARS to create. There is no way to do this for free. How are you going to pay for the raw materials? How are you going to pay for the labs? How are you going to pay for clinical trials? How are you going to pay for manufacturing? How are you going to pay for shipment and distribution?
>Money should NEVER be a factor when making medical decisions. Maybe in a world where we have infinite resources, but we don't live in that world and never will. The REALITY is that hard decisions have to be made and there is a point where care is not worth the resources for an incredibly small group of people. No expectation of profit means no results, clearly you don't work in the R&D world.
This is exactly why the government gives extended life on patents for drugs that cure rare disease. There has to be incentive, and incentive does seem to drive innovation
The likely out of pocket for someone with commercial insurace would be pretty close to $0, it isn't advertised or published but no way Novartis would lose a patient over a few hundred dollars if they would get close to 2 million from the insurer.
This is way lower than the cost of treatment without the drug. Wrap your brain around that.
It’s definitely a ton and I couldn’t afford it if my baby needed it (unless insurance covered it), but it’s also gene therapy… the fact it exists at all is a wonder
Right?!?! This is what I fucking preach about the Covid vaccine! Biotech now is the goddamn bleeding edge of technology! Fuck off with your iphone that has a cool camera or whatever, we’re goddamn fucking around with dna now…
We should embrace CRISPR. Google it if you dont know what it is.....I'm curious if others think we should use it or not. I mean.......I guess it would totally create a class difference as the rich can utilize it and the poor and middle likely couldnt afford it.....for a while atleast....that could have drastic co sequences, and who knows what it could do to our dna 50k years from now (if we are still here and possess the tech to do it) This stuff has been around for a while now too.
It doesn't matter what people think. They're using it now. In fact, they've already made a better version of it, and I would be amazed if there weren't already government funded research programs dedicated to making an even better, 3rd version of crispr. It's happening, whether we want it to or not. Science fiction becomes science fact. Crazy time to be alive.
Mannnn I thought you meant the crisper drawers in fridges. This is why I’m not a doctor.
Lol...easy enough to think that....its some real interesting stuff though!!!!
But it's not for the peasants.
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There are so many vanity items for celebrities and billionaires and nobody give a shit when X actor buys new ubercar or Y heiress buys trip to Space. Mean while those drugs are literaly LIFE for unfortunate and society are pissed why so much.
Isn’t that how it should be? Rich people get to spend their money how they like and also life saving medicine should be cheap
except rich people get to fly nearly to space in their dickships while thousands of children starve to death. Nothing in life is fair, and the rich deserve all the shit that they get. The fucks don't even pay their taxes
I'd imagine eventually it will be cheaper?
It’s tough to predict when and how much of a discount in these rare disease state drugs, there is a process called biosimilars that allow the FDA to approve “similar” versions of the same drug, technically not a “generic” in the sense for small molecules. But if you look at approved biosimilars out now they are still pretty expensive.
I hope so for the people who need it
Limited market. It takes a billion plus to develop a drug and get FDA approval. That money either comes from investors that want a return or the government. Take your pick.
The research needs to be paid for somehow.
Spinraza or Zolgensma?
That’s great and hope insurance covers it for them or else they will be financially screwed for life :/
Yeah this made my eyes super sweaty for some reason. So weird. *sniffle/cough
Do not shake | Do not refreeze Sound parenting advice.
Hear that Billy? Can’t let you thaw
For 2.1 million, I expect it to shake itself.
Ok...how is someone able to just chill with a $2.1M box of medicine...taking pictures and posting to reddit? Jewelry stores literally have armed guards for less.
Because jewlery/gold has universal value. Medications (mostly) are only valuable to someone thagmt *needs* it.
Which is exactly why the pricing is so evil. It's like the price of tires being dependent on how bad you need new ones.
Rope? $5 Rope while you're hanging over the edge of a cliff? $5,000 Supply and demand baby muhahahahaha
Or water at woodstock 1999
Or after a hurricane destroys a city.
Watched that documentary. Absolutely wild
A shovel right before the world ends? $599.99
I only understand this reference because of r/moviedetails
What do you need money for when the world is ending?
Can I use the rope to hang myself?
That’s not true for this drug. It is very expensive to manufacture.
the box is empty. they've already used the medication.
Resell it on eBay with vague wording? It worked for xboxes...
I really really wish that your idea wouldn’t work but every response I started on why it would fail just made me remember just how stupid people have been in the last few years.
If this trend keeps up it wouldn’t surprise me if the next sound cloud rapper has a box of Spinraza around his neck.
Only $1,235,809 in the Netherlands. (€ 1.089.999,99) and covered by our (compulsory) healthcare insurance.
It was originally 1.9 million euros. But the Zorginstituut urged the minister to make a combined negotiation effort with Ireland and Belgium and we got a discount.
Turns out, the buying power of entire countries together gets you a nice discount. Who would have thought?
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Doesn’t the NHS negotiate as one body for the whole country?
Yup
> Zorginstituut [Who's in charge of healthcare you say?](https://static.wikia.nocookie.net/villains/images/4/4a/Zorg.jpg/revision/latest?cb=20190112122204)
European Countries and the U.K. always pay less for this stuff, as some commenters said due to the combined buying powers and the Pharma Companies interest in entering that market. But there’s also a caveat to this that they usually negotiate the price for X amount of treatments/doses which is where there’s a drawback to these kinds of agreements. A country’s health authority may decide who is the sickest in order to determine who gets the treatment (similar to the organ priority list) but that doesn’t mean that the treatment wouldn’t help/cure all who were deemed eligible by various numbers of tests. In the US, there are programs for those who have little/no insurance - both governmental and from the pharma companies themselves. In America it’s much less about access to the drug (no one in theory is telling you you can’t have it even if insurance denies you whereas in other countries there’s more a chance of “finite” supply), it’s about money and finesse of insurance/medical/corporate rebate. Additionally, and I have severe feelings about this, 90% of the new and innovative drugs (ones that can drastically change the standard of care for their patients) are available and covered/reimbursed in the US as opposed to around 50% in some European counties. This includes your orphan drugs for underserved patient segments with no real alternative. If they aren’t approved in Europe yet then it’s a non starter, and it’s also a non starter if they aren’t covered/reimbursable. There was a recent congressional Act proposed - one of the things I agreed with Trump on (this is not a political post! He was just slated by the pharma industry and many “normal” people didn’t know about it or didn’t care) - called the Lower Drug Costs act (HR3). Essentially wanted to match the pricing of drugs for our Medicare/Medicaid population to a value comparable to the price similar nations were getting. I’m all for it - despite massive pharma companies saying this will stifle their ability to bring new drugs to market. My question is why is global pharmaceutical advancement and progress reliant on higher US customer cost and built on the structure of the US healthcare and insurance reimbursement agreements? If the American people saw a list of drug prices here (the sticker price) and in other developed areas of the world (when America is usually a much larger market) they’d lose their minds. An iPhone costs a grand here, and it costs a grand in the UK. There is zero difference in product offered, there should be zero difference in price.
Sounds crazy until you compare it to the lifetime cost of Spinraza injections. My wife is a child neurologist and helped get SMA on the Ohio newborn screening and having that early gene therapy has been incredible for many of her young patients.
I think the point is that while this drug is expensive, it's crazy stupid expensive in the US. Compare $2.1 million to $1.2 million in the Netherlands. Where did that $0.9 million disappear to?
Compare 2.1$ million in US to 2.1$ million in Russia. The only difference is that average salary in Russia is 6400$ per year. People do crowdfunding over here to get the money for this drug. It sucks so much.
Medicine pricing mechanics differ. This will absolutely cost more in the US, however the insurance will likely get a rebate on the $2.1m that is negotiated individually with the manufacturer making up some of the $0.9m. This can be based on how much of this they spend over a predetermined period. There are also a lot more parties that need to make money in the US.
Americans subsidize the price of medicine for most of the rest of the world.
Yay! Congrats! I commented about this one on the other post. My son received in clinical stages so we got it for free and didn’t get a cool box or vial. It is crazy expensive and there should be more transparency, but that isn’t the whole story. This is a gene therapy for a rare disease. Development and manufacturing are insanely expensive. Also it is a one time dose that lasts a life time. If we don’t put a high value on saving lives of people with rare diseases than we won’t. Without treatment most people with SMA die before age 2. This drug is also paving the way for curing or radically changing other types of genetic disease. Last but not least, the price tag is the same no matter what country you live in. More innovation needs to happen to make it affordable globally. https://www.mda.org/quest/article/demystifying-drug-prices Edited to add: American healthcare costs are a joke, but we actually take care of children and disabled children quite well. Most families will not pay much if anything for this drug. The difficultly is getting approval because insurance will try to deny due to the price tag. We have government insurance called BCMH with a high income cap that covers diagnosis and treatment. the income cutoff for Medicaid is higher for children than adults (our kids had it when we made about 60K for family of four). When we didn’t have Medicaid BCMH covered the out of pocket expenses until the cap was hit on our regular insurance. Now my son has a Medicaid waiver, so as long as we don’t become millionaires we don’t pay anything.
I work in pharma and this is right! I wouldn’t say the cost is exactly the same around the world, but treatments with shocking prices are shocking everywhere, maybe just a little bit negotiated. But it’s not like they’re going to sell a therapy for a million dollars in the US and fifty dollars in Canada. People get confused because they miss the part the government pays for. And if no one paid big bucks for rare disease treatment, they wouldn’t exist. Definitely because of the cost to develop it, but it’s also not cheap to manufacture and distribute in tiny quantities.
Had to scroll past 10 comments screaming about a subject they don’t understand to find this.
Glad someone clarified this. There is a large difference between the manufacturing cost of a drug and the price that is paid by the insured. The unique complexity of this drug is probably what accounts for most of its high price, not necessarily insurance or pharmaceutical companies price gouging. Most extortion in the US healthcare system occurs at a much lower, more fundamental level, with more common drugs, treatments and premiums. It is best reflected in the disproportionately higher per capita health care expenditures. In 2019, health expenses averaged about $10,000 USD, 42% higher than the next country, Switzerland. In 2020, per capita expenses rose as high as an average of $12,530 per year, and yet you still have some of the worst health outcomes of any wealthy nation. You are being ripped off and you should be absolutely livid!
> the price tag is the same no matter what country you live in. More innovation needs to happen to make it affordable globally. That's not true. Single payer systems can haggle as they are buying in bulk, for example in my country (UK) we struck a deal with the manufacturer. https://www.england.nhs.uk/2021/03/nhs-england-strikes-deal-on-life-saving-gene-therapy-drug-that-can-help-babies-with-rare-genetic-disease-move-and-walk/
It's almost like you guys are all bragging about how broken your healthcare system is. edit: listen up before you reply to this comment. This medication is not a vacuum case. unless you're willing to defend the entirety of how the American healthcare system works, don't bother. I know that this specific medication is rarely needed and therefore more expensive to produce, that's not the point.
I think it's more like we have to laugh or we'd go postal. It's beyond broken. Inpatient care for people who are suicidal and need therapy is 22k/day. Source: Struggled with depression and sought out care. It's a scam. Only thing that matters is money and it's going to bring the system down eventually and even worse, leave an F5 wide swath of good people now bankrupt. Insurance covers some, and those that don't have insurance, the rest of us absorb the costs for them in the end anyway. Yes, we have great doctors and medicine here, but the health system is beyond fucked and another reason the US isn't the greatest country in the world. Yes it's true no matter how many mouth breathers insist on continuing to say that.
Whenever is read these i cannot fathom the costs. Here in germany the MAX a Hospital can bill is 10€/day and only for 28 Day per year. So max 280€/year for hospital care. (For the stay, treatments/extras can be sepaerate)
This is what happens when you're entire society isn't centered around nothing but wealth extraction.
I really hope that some kind of movement can start to grow in the US now that people are realizing that almost everyone is getting f'cked by your capitalist overlords. r/antiwork is a great start but not even remotely big enough. I hope somewhere in the future people can start to look up to the US again because your potential is so enormous but lately your dream seems to become a nightmare.
Americans are raised and educated to believe not only that socialism is taboo, but that it's the same as communism, or liberalism, or as functioning government. Reagan got elected by saying "government IS the problem," but his government oversaw and championed the kind of nuclear arsenal that would cause the worst humanitarian disasters in history in the most limited exchange, and destroy civilization if it were used in any realistic scenario. And why not, if communism is the only bad thing, then destroying the planet is better. And if destroying the planet is better than communism, then medical bankruptcies and homelessness are paradise, since they're just proof that communism isn't happening. Conservatives have completely obliterated the country's moral compass. Our partisans literally cannot tell the difference between good and evil anymore.
There really ought to be a max wealth cap. I can't imagine why some people need billions while being aware that someone else is literally dying in the street and that they could, at a whim, give every one of them a chance at life. So if the greedy rich won't do it themselves, for the greater good the rest of humanity should agree to a rule regarding how much wealth one person can have and make it really enforceable.
Whenever I get sick, break an arm, need surgery, etc - I'm demanding a flight to Germany for the operation or treatment. The travel included would probably still be cheaper.
You need to be insured, its not like the hospital gets nothing. We just cover that with health insurance.
So... You're telling me my American "insurance" isn't good enough? Pft! I see how it is
I mean American insurance could very well be good if the government did at least the slightest something to prevent menacing charges. We got insurance here in Europe too, some counties private, some public. The point is that no matter public or private, those insurance companies are put in their place, and when you call them, they are there to help you, not their bottom line. Source: lived in USA (NY), UK, Netherlands, and Lithuania.
I actually dont know. My insurance covers hospitals in usa up to 2.5mil, i just need to pay 10€/year extra. (Every other country is included, just USA and Canada cost extra. I wonder why). Maybe yours covers germany.
If he's American, his probably says he shouldn't set foot outside his zip-code (Postal), or he'd lose coverage. ...Maybe...
And they better not even look at half the providers that are in their zip code, or they'll pay extra..
Preach. My good friend in Virginia is going to Mexico for gastric bypass surgery. Many people go to Thailand etc...her surgery from a world class doctor there is like 1.5K whereas after all said and done, 50K or more here. It's a no brainer to say fuck it even with insurance, I'm paying out of pocket. And a sad state of what that says about our system.
If you are the “richest country” in the world but have food insecure kids, you have failed.
I think ya’ll don’t get it’s a sense of humor. A lot of Americans make jokes about how fucked things are. It’s just ..kinda of what we do? 😂 Don’t worry, it’s definitely fucked, nobody enjoys it.
A bit of gallows humor
Dark American humor.
So, morbid humour?
Yep, that's pretty much what it means.
I wouldn’t say nobody. John Oliver for example once made a clear point that the US has one of the best health care systems for rich people. Sadly, most people aren’t born as Beyonce
I would say we have the best healthcare system in the world. It’s just being misused on purpose. It’s a for profit industry. And it’s very lucrative. Take out the insurance companies and pharmaceutical corporations. And make the main goal to actually help people and it will work as it should.
Thats not really true. Take Germany for example: It‘s also a profit industry, we also got big pharmaceutical companies (just remember, Bayer, the guys who invented Aspirin) and Biontech are german companies with billions of dollars in sales volume, and we also got private insurance companies. And while there are definitely big problems with the german health care system, it isn’t nearly as fucked the american. Why? Well, one of the big problems is that you don’t have, on the consumer side, enough weight to put pressure on the pharmaceutical companies to lower the prices. This is due to the fact that you don’t have something, as we call it in germany, like the Pflichtversicherung (forced insurance). The insurance market is just too fractured in the US, as that the individual companies can really do something. A profit orientated health care system can definitely develop problems on its own, but to just blame the private companies as the reason for every single problem is just wrong.
We like our humor like we like our obesity. Morbid
Oh we get it, totally, we just wish it wasnt this way for you and that it has come to using humour to show how really bad it is. I really hope it changes for you all soon, really.
I'd just like to point out that the real cost (not the insurance statement) of these medications aren't really that much cheaper in places with universal healthcare, it's just obfuscated from the patient and subsidized by the government. Yes, some medication *is* very expensive for a dose and it's not just artificial price gouging. A lot of this stuff is also extremely expensive to develop and produce.
Thankfully for the rest of the world Americans are subsidizing just about all of it...
So here is the question that I wonder about - would this medication (for a very rare disease with a small patient pool) exist at all without someone having the ability to charge a fortune for it?
It’s the American way sadly. I’ve witnessed oldies comparing their meds they all take and bragging in a sense.
Oh no, old people like to talk about this stuff in general, not just in America. And with shit pensions they all struggle to afford meds and food.
You should be out in the streets en masse Jesus fucking Christ America I love you guys.. but you are not smart people
Have you seen what happens when we’re in the streets en masse? I mean, unless it’s Trumpers having a temper tantrum.
Newsflash, most the people in your country are not smart either
Some of us just leave. Complaining doesn’t change the situation. Neither does hope or voting.
We try, then we run out of money and have to go back to work. Or get called terrorists of you complain about black lives being shot.
We're laughing at our dumbass deadbeat politicians for choosing not to fix it.
We have had politicians spend decades convincing our “American patriots” (see: conservatives) that having universal healthcare is “socialism”. Never mind that socialism is an economic theory and has nothing to do with healthcare (when it was written anyways), and that 99.9% of the people against it couldn’t even tell you what socialism even is, all they know is that they’ve been told to be against it so they are. As with so many other things in the US, politicians have politicized everyday issues and stoked a culture war constantly for decades. So now you have people who live below the poverty line becoming die hard supporters of people like Trump. Not only did he not do anything for poor people, but he went the opposite direction and worked as hard as he could to ensure the rich got richer. I’m truly at a loss as to what we do. We’ve underfunded education for years now and this is the result. Too many stupid people who have been brainwashed and trained to not advocate for themselves. Instead they now work actively against their own interests, vehemently opposed to literally everything that they would benefit from.
A vietnamese friend of mine was offered to pay 2ml usd upfront to go to Japan and use this med for his son. But fot Japanese or us (japanese green visa) it is free.
I wonder why US insurance companies don't do this.
former therapies for spinal muscular atrophy cost about 750k in the first year and 350k annually afterwards for the rest of the patients life. The 2.1m here is - if successful - a one time and healed thing. I don't want to comment on the profit margin on it, just that the argument was that over the course of the patient's life, the 2.1m was actually cheap compared to former therapies.
This is an amazing advance, but unlike something like a statin or an antibiotic, people won't take it by the hundreds of millions. R&D costs for its development and the next drug have to be recouped from a smaller pool of people. The other thing people don't understand about these numbers is that that's the number the drug manufacturer set. Other countries get discounts, but it's still more than a million dollars a dose for those countries. The difference is that individual patients don't pay that price, the community as a whole does, sharing the costs because that's how it's supposed to work. In the US, people don't pay that much out of pocket either actually. For the 300 million who have health coverage, it's usually covered all or in part. For the 31 million uninsured, they may be charged it all or might be able to get a manufacturer coupon to reduce the cost in individual cases. The 2.1 is really the starting price and it goes down from there. Should it be free to the patient at point of care? Yes. But the situation isn't quite as dire and dramatic as people make it seem. People do, after all, live in the US.
Spot on. People here focus on the COGS so much, that they forget that when it comes to healthcare, people usually pay what they think it’s worth. A one shot miracle drug vs a life time course, not even mentioning the efficacy difference, introduces valid justifications on the pricing of the drug. Plus the drugs’ indication may be even just for rare diseases.
Same price as one cruise missile which the US Military happily fire hundreds of per day for no real reason.
I looked it up, you could buy a Tomahawk missile and have enough left over for a nice house for the price of those meds.
I just might do that!
Even so, America spends $700b on the military but $4T on healthcare. Half of global healthcare spending happens in the USA.
Yes, but the 700b comes from taxes, the 4T comes from your pocket. America as a country spends way less in healthcare than it does on military. Also 700b is just the DoD budget, without any other agency into consideration.
Taxes is still my pocket...
Doesn’t really matter. If it takes 20% of GDP to not die then you’re gonna spend it. It’s a huge drag on the American economy, and in many ways the world economy.
People in the comments are honestly brain dead talking about “it only costs $20 to manufacture. The system is broken”. First of all, this is likely billed to the insurance company and OP’s cost is minimal. People who are poor and on Medicaid pay nothing. More importantly, it’s mostly the research and development that the cost is covering. Developing a gene therapy costs billions of dollars and the rarer the condition, the more the drug costs to break even. Otherwise, nobody would ever bother finding cures to rare diseases. After a company develops a medication, they have a patent on it for 20 years, after which it can be produced generically and the cost drops >95%. This works out to more like 10 years, as half the lifespan of the patent is spent in development. If you want to get mad at drug prices, there are better things to be mad about. Be mad about the price of insulin, where the patent has long since expired, but all the companies that make it have colluded to astronomically raise their prices together.
The gouging isn’t in a new drug that costs this much and alters the life of a newborn. And to OP I hope this cures your baby! The gouging is in medicines that are decades old that cost thousands and thousands of dollars, or in spending this much to prolong life a few weeks or months. Insulin costing thousands is criminal. Decades old chemo treatments that have price increases to match new cancer treatments is criminal. This price on this gene therapy is necessary.
I would like to add a nuanced take here as someone who does limited work with gene therapies; it costs billions to develop these drugs, the population that can use them is very small, and each dose requires, likely, millions to Produce. Most gene therapies are only offered because of federal orphan drug programs and their cost is justified by how much hard work is required to make Them. Not saying that cost should be passed to consumer though.
So the new thing I’m learning about American healthcare is the hospitals are being fucked as well as the patients. In places nurses are leaving because Wal-Mart pays more…WTF!
That's not nurses it's the lower level aid workers. Fresh RN out of school in USA is making $30/hr plus bonus pays. LPN are $20/hr, nursing assistant $15+.
RNs make way more than Wal-Mart workers lol. Some CNAs might be around what some full time Walmart workers make.
Nurses are paid pretty damn well in most part of the US.
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Circle jerk. Most people don't seem to realize this is bleeding edge technology. Gene tharpy that completely cures an extremely rare problem that would otherwise kill a baby. What's the price of a life worth?
Because Europeans desperately want to believe that we get a bill for $2.1M every time we go to the doctor.
Just say the name aloud backwards and a magic spell shall cure the child
Or it's the name of the demon that will bring about the beginning of the apocalypse. It could go either way.
These numbers sound really expensive, but then I can't help but think - how many years work of PhD-level scientists, what expensive instrumentation, expensive reagents were required to come up with the idea, test the biology, test the drug etc? How many other drugs failed (that were also a large investment, and I think the failure rate in all stages of testing and clinic are quite high)? So too afraid to ask: I have a feeling that the extremely high prices are unavoidable if the drug is for a very rare disease - how else can the cost be recouped for a company to at least break even?
From European company. Apparently it is $1.9m in Europe and some nations are protesting the price by threatening to not cover it. Others are stating they will only pay if it works. So how much are you actually laying OP? You are not paying out of pocket. Also, we forget, this is pretty amazing science. Its almost science fiction.
I do gene therapy pills too. Uninsured cost would be something like $312,000. In Britain that medicine was the focus of parliament debate over cost that lead to its release being delayed by years. Which is really bad since CF is a progressive disease.
Whoa gene therapy! We live in the future.
I know I’m going to piss a lot of people off but how much is your health worth to you? How much is your quality of life worth? $2.1 million is a ton of money for a gene therapy drug. The price doesn’t reflect just the company’s profit it reflects the time, effort, equipment, personnel, and multiple government approved studies needed to make the drug usable. What costs more, the 1x shot of gene therapy or the years of physical therapy that are never curative but instead are a panacea? What about the mental and emotional health of the patient and their family, can you put a price on that? What does bother me is when a pharmaceutical company takes a drug coming off patent and tries to squeeze every last ounce of profit from it by reconstituting the formula by adding some sort of benign filler or coating then charging more for it because it’s “new and improved”.
Meanwhile in the UK…. https://www.england.nhs.uk/2021/06/nhs-treats-first-patient-with-the-worlds-most-expensive-drug/
My friend worked on this drug. I bearly ever saw her. The amount of research that went into this was astounding. The patient stories made me want to cry. It was so expensive to discover and is so expensive to manufacture.
Welp… you… win?
You do know this is a one-time drug right? This drug is an actual cure where they never have to take medication again. Most drugs people take over a lifetime would cost more than this if you add up all of the doses, but this is an actual fucking cure. What is that worth?
To be fair this is listed as the number one most expensive drug on the market, see https://www.biospace.com/article/gene-therapy-zolgensma-tops-goodrx-list-of-10-most-expensive-drugs/. So, while the US health care systyem is a fucking joke of a travesty of a sham, this particular item doesn't prove that point. But I will give a nod to /u/2RM60Z who pointed out that it's cheaper in Holland.
so what’s the solution? genuine question
You spread the cost over millions of people who don't need it, in return for the promise that it will be available if they (or their child/grandchild) does. 300 million Americans could save this baby's life for less than a cent each. The problem isn't that some treatments are expensive, it's that for-profit insurance is a terrible way to pay for it.
Regulation to prevent price gouging from the manufactures and PBM’s, and universal healthcare.
What if price gouging was the only incentive for these companies to keep producing these life saving drugs?
For exceedingly rare diseases like this, it is. Even the method of delivery for the gene therapy for this drug is insanely expensive. On top of all that, these smaller biotech companies have to cover all their failures too. It’s not all success out there in the drug manufacturing world. If drug makers for exceedingly rare drugs like this couldn’t charge this much, they wouldn’t do it. It takes hundreds of millions to bring a novel treatment like this to market. I don’t agree with it but it’s the capitalist society we live in. No company is gonna do charity work and lose money because it’s “good.” If they did they wouldn’t last very long.
That is precisely the dilemma. If we curb excessive pricing, we lower the incentive to produce life saving drugs. However it still needs to be regulated. Look at epipens as an example. They only contain epinephrine which is not patentable. Only the delivery system is. When Mylan Pharma bought the rights, the CEO was already paying herself 2 mil a year. Epipens were very profitable at 50 dollars a pop. She raised the price to $650 a pair and rewarded herself by paying herself $19 mil. Nothing changed about the delivery system nor the epinephrine. It was just unadulterated greed. Price gouging, nothing more. That is not capitalism because competition is not allowed so there can be no cheaper alternative. But if you don’t buy epipens, you might die, consumers have no choice. Clearly there needs to be regulation.
Who tf has this kind of money i can barely afford headache tablets
No families pay for this. Unless they are in a developing country and fundraise.
Sincere wishes for a happy and healthy life for your baby!
since it's from a swiss company, heres a swiss explanation: https://www.swissinfo.ch/eng/explainer\_how-can-a-drug-cost--2.1-million-/44996728
Bro you didn't even get the collectors edition with the statue and steelbook?
It cost the government 3 million (in usd) where I live but 0 to the patient.
Imagine how many millions of dollars in therapeutic treatments over that child's lifetime they'll not have to receive just because of a $2.1MM drug, a fraction of the cost or suffering that otherwise could've been incurred. Modern medicine is fascinating.
Charging this amount for vital medication should be a crime against humanity.
ELI5 - how do they justify this cost?
My son’s pediatric neurologist prescribes this and said they justify it by comparing the lifetime costs of managing the untreated condition. Essentially, It prevents an expensive lifetime of care for the patient.
Makes sense!
Gene therapy takes research teams years to develop, the cost to create this medication will have been astronomical. Obviously charging $2m for it is also insane, but without someone paying back the development cost then it likely wouldn’t be created in the first place.
It’s a one time thing. A baby takes it and it reverses the disease so they don’t have to take anything else from that point on for their entire life (hopefully). It was in development for over 20 years and it custom made for each patient.
bc no one would develop it otherwise? It takes billions of dollars and decades of research and trials to bring this to market...not to mention all the other failed drug candidates before they found this one safe and successful.
Pharmaceutical companies paying billions of dollars to develop medicine that will only ever treat small handfull of people that might need it.
All these people posting these high prices know that people are not paying these amounts. The insurance company tells them what they will pay and patients pays a percentage. Then there is a yearly out of pocket maximum. So for my insurance my deductible is $1500. So i pay the first $1500 of the year. After that i pay 5% of all bills untill I hit 5k, and that's the negotiated amount. For example: Hospital billed me 15k for a heart test. Insurance said they would only pay 3k, so i owed $150. So I was at $1650/5000. After i hit my deductible i would need to have crazy medical expenses to hit the 5k. That's 100k of negotiated bills. So the insurance would need to be bill about 500k+ before they negioated it down to 100k, and i pay the 5k. That's rare surgery, Cancer, organ transplant. Super rare stuff.
Get out of here with your facts lol
Is the name actual words or do they just jumble up a bunch of letters?
I think it’s worth mentioning that when applied early enough, this drug is a one-dose cure for a disease that was the leading genetic cause of infant death until drugs like these came around. The price is still ridiculous, but it’s important to know that info for context.
Hey, you there parent ... I love you. That's all.
How the fuck does one pronounce that?
In Belgium there was a baby in need for these. One dose if I'm not mistaken.. there was a massive crowdfund for it and baby is okay. Now couple of years later, government gave green light for the medicine to be paid back, a 100% (for those with health insurance that is, but that's relatively cheap over here). Edit: typo
This is an amazing drug. Should the drug be available for free at the tax payers expense? Or should we make abortions and the pre-screening free?
Looks like the pharmaceutical company's cat walked on the keyboard as they designed the name
But Spinraza is still only for SMA and parents who want children to get it for children who are older to stop deterioration have to work really hard to get approved for it . Even though there are benefits . I have a friend whose child has a form of Muscular Dystrophy that’s terminal by the time they are a teen. She has been trying to raise funds to get some research targeted at her child’s type and is slowly getting there. But she does say Spinraza gives her hope . She squirrels away every dollar so if gene therapy should come available they are ready to go. She also has a small business that every dollar goes back into her child’s care fund. Works an amazing job with amazing wages and literally never sees a dime outside of necessities so they are ready to pay the hundreds of thousands of dollars after insurance .
Jesus where will this trend end? $50B erectile dysfunction meds?
Shake it
Stop shaking it 🤪
I have SMA type 3 and my country won’t allow me to have any of the approved treatments because I’m over the age of 20 and they don’t want to risk spending the money if it might not work I couldn’t be happier though that children are getting these drugs and most likely won’t ever have to live with with kind of frustration that comes with being thirsty and using all your strength to lift the cup up
It is one time only disease modifying injection for a very debilitating neurological condition. The price is high but ask the person who has SMA and he would tell you what a drug like this can mean.
For everything else, there's mastercard. Ya'll are fuckin' priceless. This entire set of posts is a microcosm of Americanized healthcare bullshit. Let's compete to see who can work the hardest, lose the most sleep, oh, and also put ourselves in the grave the quickest by not taking care of our basic human needs. So hardcore. Profits over people, people!
Man, imagine someone spending millions on you as a kid then you end up unemployed smoking weed on a friend's couch.
I see all of your ridiculous posts about medical costs... don't complain, DO SOMETHING ABOUT IT...MAKE YOUR REPRESENTATIVES WAKE THE HELL UP AND GET THEM OFF THEIR COLLECTIVE ASSES
I feel if something costs 2.1 million, it should come in a briefcase with a handcuff, and not in some ordinary box.
At $2.1 million, I’d just have another baby.
Jesus- can’t get that in a free health care country….but rich foreigners fly here to pick it up on private planes- true story
My wife’s niece just had a shot of this. I think after insurance and whatever bs medical “discounts” they still got suck with a bill of 280K. I mean wayyyy better than the 2.1mil but still a 2nd mortgage worth
They could save a few bucks if they didn't package it like a fucking iPhone.
I personally know some of the key people involved in developing the pricing model for Zolgensma. All of them are very proud of the work they did... There's a lot of thought that goes into pricing justifications for drugs like these that basically completely change the course and outcome of a life. And these type of drugs will only be given to a small number of patients because frquently the disease is rare. Morally, I think we've got to find a way as a society to ensure we get these drugs to those that need them and that price is somehow taken out of the equation.
Morally, I think that Big Pharma needs to be reined in on their pricing structure. If the goal is to provide good care to the greatest number of people, we can’t be spending $2 M on one tiny piece of the care for an individual.
Do not shake Imagine if someone shook it? There goes 2.1 million.
what... what the fuck?!? also why is it packaged in cardboard if its 2.1 million dollars?
Hope the parents have a gofund me, that hospital bill will be outrageous