Most Expensive Drug Now $2.1 Million

U.S. regulators have approved the most expensive medicine ever, for a rare disorder that destroys a baby's muscle control and kills nearly all of those with the most common type of the disease within a couple of years.

The treatment is priced at $2.125 million. Out-of-pocket costs for patients will vary based on insurance coverage.

Link

This is getting obscene, and only exists because of patent granted monopoly power. I'm coming around to the idea of publicly funding medical research and ceasing to issue drug patents because the current system of allowing a single company to hold someone's life hostage in exchange for whatever sum they demand isn't feasible or justifiable any longer.

Does anyone else have any proposals to address the situation (or perhaps think it's just dandy the way it is?)

I agree with you. The other way is to disallow monopolies by adjusting the rules on patents. But that would take a lot of time, with a lot of opportunities for the industry to influence the decision-making.

Page could not be found.

Try https://medicalxpress.com/news/2019-05-fda-2m-medicine-expensive.html

Okay so while it is a damn costly medicine, the alternative costs $750,000 for the first year and then $350,000 per year after that VS this one that is a one time cost $ 2.1 million. Few patients so trying to make a profit on it, well just break even I guess, makes it so costly.

Thanks. I posted this from my phone and I try to remove all the referral BS before posting links.

Thank you.

Healthcare should not be a business.........

To be fair, this drug is for infants, is for gene therapy, and only afflicts about 400 newborns per year. I imagine it was incredibly expensive to develop and, given how little it will be used, is probably why it costs so much. Insurance would pay for this, right? I mean living or dying is not an optional procedure, I think something that would literally save you from dying would be covered by insurance.

Honestly though I think there should be a "rare disease cure fund" or something like that. Like a bounty but for cures. Government should just pay for that shit. "Oh, you cured cancer? That's really great of you, how much did it cost? 300 million? All right, here is the 300 million plus 200 million on top of that as incentive. Now go cure Ebola or something"

Now, the Epipen costing 500 dollars? That's bullshit. People use that all the time, it's been around forever, and is easy to make.

No it should not. Well, not a for-profit business, at least.

I used to think being a doctor or in healthcare was an honorable profession, something people did because they believe in it, but I don't believe that any more. We are a decade and another bad president away from the fictional healthcare policies of Repo Men.

You think a drug like this would exist if not for money? Let me guess, a US pharma developed it, right? You see any innovation come from these socialist healthcare countries? What’s that - no?

Yes this drug is priced out of reach for most people, but the research, testing, marketing, and development must’ve been staggeringly expensive. Especially for such a rare disorder.

You know why the US has some of the best healthcare and innovation in the world? Yup, you guessed it - $$$.

@joebones5000: Oh, insult me instead of debate.

Who’s dumb here?

If you get a choice between getting money or not getting money, wouldn't anyone get money? I do think you have an argument that with public research it would be harder to have drugs/material developed for rare disorders.

It is interesting that abortion should be criminalised but it's OK for a society to let people die if they can't afford it. It's kind of fascinating how money gained an almost divine status that ultimately surpasses the values of traditional religions. And I'm not even criticizing, it's truly fascinating from a philosophical and sociological stand point that a growing portion of a society lives by this code.

Makes sense. Now with all the states looking to pass strict anti-abortion laws, they'll be able to get women on the hook for even more money for births they don't want.

Research is generally funded by government grants.

@Sevenizz: Actually the UK has invented its fair share of medicine. The UK has a great healthcare system, its called the NHS, it’s entirely tax payer funded.

If you have a serious disease in the UK which requires extremely expensive medicine, it will be free. All radiotherapy and Chemotherapy is free in the UK including hospital stays, for example.

But I will add, not all medicine is on the NHS, again there is a balance.

France and Germany are also big players in this field and they both have great healthcare systems for its people.

However, I do understand the obvious, it is money that drives medical research. But it can be better balanced, after all medicine is for people.

The researchers themselves would probably want a smaller cut if it could save lives. Medical Researchers go into this profession mainly because they want to save lives rather than become millionaires.

I'm guessing they've only made two vials of the stuff cause I doubt there is that big of a market that both need the medicine and can afford it.

@mattbbpl: The reason we have patents is it creates an incentive for people to do their best because they know they will profit from their hard work. Public research? That's all nice and well but the Soviet Union banned all private research in favor of public research and look at where they are today — in the dustbin of history.

@Kjranu: You're right. Though it comes with a lot of bad side effects. There are other ways to create that incentive. Like giving the people who were directly involved in creating a successful product a financial reward.

Half of the pharma R&D in the entire world happens in the U.S. precisely because of the money that can be made, and the entire world benefits from it. 2 mil for treatment is better than the treatment not existing.

@vl4d_l3nin: boom.

The alternative to people making a profit on research, lifesaving or not, and publicizing their research so others can further the research on their own isn't people *not* making profit on research and still publicizing their research, it's people making profit on research and keeping their research for themselves. If the patent granted monopoly was removed, pharmaceutical companies wouldn't make their research free for all, they'd go for the patent's current go-to alternative protection: the industrial secret. I assume you can figure out on your own why that's not a prettier picture than what we have now.

my understanding is the drug price reflects the cost of development coupled w/ the rarity of the condition it is being applied to.

what confuses me is if something is so rare of a condition, why would substantial resources have been committed to drug development to fight it in the first place? why produce a drug for .0000001% of people that will cost them millions to pay for?

@comp_atkins: "my understanding is the drug price reflects the cost of development coupled w/ the rarity of the condition it is being applied to."

I've been trying to find this information, but can't. I can't find the r&d costs for the drug, nor is that the rationale given by the company for the price.

i doubt any company would disclose their exact formula for this... they don't want the world to know they're charging $2M for a drug that they spent $100K developing by accident :P

Right. And input costs aren't the deciding factor in pricing unless due to legislation (like in the case of the ACA) or competition is close enough to perfect to push it down to the margin (which is highly unlikely to be the case here).

"Socialist" Finland with it's free healthcare is the best in cancer research and treatment:

https://www.docrates.com/en/treatments/patient-satisfaction/finland-leading-country-in-cancer-care/

My tax euros well spent

@Icarian: That’s comforting to see. But I don’t think it changes the general narrative that money influences innovation.

https://www.healthaffairs.org/do/10.1377/hblog20170307.059036/full/

@joebones5000: no need for government to spend so much money on research. We have the internet and experimental data can be shared from all over the world for free. Shared research, means lower costs. On top of that, schools already do a huge amount of research for free as part of their curriculums. That would continue to happen whether patents existed or not. The largest expense is human trials, but again data can be shared all over the world to minimize the costs.

Naturally, there might be tons of these companies that pop up to sell copies of drugs when they didn't do any work themselves. But, those companies will have lower sales, as people trust them less.

The free market can resolve every fuking thing on its own no government or courts interference needed, including climate change and pollution as long as all externalities are factored in to the market price. The reason why it isn't happening is because of power hungry pricks and the centralization of authority, ie the government. Government and courts have far too much power, they have created their own communist socialist paradise where the free market is working against 90% of the population while the top 10% are granted immunity. No wonder there's ridiculous levels of wealth inequality, there's climate change, and plastic pollution.

Everything starts and ends with the scam government and their judicial arm, the courts

@joebones5000: and what you don't understand is that we have never had a real free market, ever in history. The government has always interfered in every aspect of the economy to make sure the free market doesn't work as intended. Capitalism works when government doesn't invent new things as property. Ideas aren't property never were, but government changed that with invention of patents. Names weren't property but government changed that with trademarks. Music, movies that are digital are NOT property. The physical CDs are property however. Again government overstepping. If you think I'm supporting piracy, you're wrong. I don't consider ideas as property so in my mind it's not piracy or even theft. A successful actor, musician or artist will still make money and be successful even if intellectual property piracy was re legalized. Endorsement money, tours, all of that will generate revenue. Anyway, there's so many things that aren't property yet the government calls it as such to.influence the free market in a specific way.

Also, without capitalism, humans would die off quickly. Trust me socialism and full on communism sounds nice but it isn't, it's most likely a horrible thing.

Switzerland actually.

before modern humans and society developed, we were mainly hunter gatherers and the human population was very low. We didn't have societies but we did have tribes and smallish communities. You can find some of these tribes still exist in africa, in the amazon, and other parts. Thats the way we used to live. Global population was around a few thousand at best.

Modern society developed as a direct result of agriculture, and agriculture developed trade (same thing as capitalism) which ultimately developed society as we see today. Without that system of trade we had in place, the government would need to redistribute all resources and screw everyone over. Look at how the russians lived in the USSR, it was a complete collapse of society.

This may not be the best example of out of control drug prices. This is a very, very targeted medicine that is used to treat a very rare disease. Some of those truly are very expensive to research and then produce. I suspect the alternative would be no medicine at all. The bigger issue I have with drug prices is on those of more established medicines such as insulin, for example.

@sonicare: So fund it publicly.

The trouble with that, is that, in all likelihood, the government would say no to that medicine. They're likely not going to research a medicine that would help an incredibly small group of people and that would have extreme costs. For example, would taxpayer money be better served researching better treatments for childhood leukemias that affect many children, or a rare disease that affects 10 kids a year?

@sonicare: We're paying for it anyway as well as the markup. If the money would be better spent on other drugs, then the money we spent on this one was misallocated. If this was the better priority, then there's no reason the same decision couldn't be made with public funding.