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A million-dollar drug

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Re: A million-dollar drug

#71

Post by ThrustVectoring »

gfodor wrote: post #49
wrong_variable wrote: post #34

Earlier quoted context omitted.

The problem is with a house / car / TV / phone you can always reposes it.

It just backs out to interest rates commensurate with the risk. Lack of collateral doesn't mean you can't get a loan. Perhaps the economics wouldn't work, but it sure sounds like nobody tried in this case. What it would boil down to is if the insurance company expected a larger net cost on a traditional drug regimen for the life of the patient, vs servicing a loan at the market rate over N years. Interest rates are s…

Insurance companies don't cover total health costs over the life of the patient. They cover the next month of health costs, and a certain percentage of their customers churn afterwards. For insurance companies, providing treatment that lasts a longer amount of time can often be a terrible business decision - if the customer switches insurance providers afterwards, then they're essentially subsidizing the insurance company they switched to.

This more commonly happens with prescription quantities. Medication compliance is far better when people can pick up a three-month supply of medication. Insurance companies want patients to pick up one month supply instead, so that they aren't paying for two months of medication for every patient who switches insurance companies.

Re: A million-dollar drug

#72

Post by cletus »

So I was expecting another story about some IP troll buying the rights to a drug with a monopoly and then jacking up the price (like the whole EpiPen fiasco) but this wasn't that.

There's an old Chris Rock bit about Big Pharma where he says there'll never be another cure for HIV like there was for polio because there's no money in that. The money is in getting you to the next stop.

It's poignant because this isn't a theoretical scenario. Gilead recently was downgraded on declining revenues because they're wiping out the disease (Hepatitis C IIRC?).

So, back to Glybera. There are plenty of low-incidence diseases that are treated by expensive drugs to manage them. This is a lifelong commitment. Covering such drugs in company health plans can significantly increase the per-member costs.

If you have a drug that essentially cures the drug in one dose shouldn't that be weighed against the lifelong cost of covering a regime to manage the disease that is inferior? Multiply that by the disease being quite rare and sure, you end up with a $1 million price tag.

As further evidence for how screwed up the US health insurance system is: companies enroll in plans for their members typically for a period of a year or maybe a few years. Let's say your drug's price of $1m compares favourably to $100k/year for 40 years to manage the disease. How can a company who might only be covering the employees for 1-3 years be expected to cover that higher cost?

To be clear, this is further evidence of how stupid the US model is. In a single payer model this particular concern goes away.

How many rare genetic disorders are out there where $1 million per patient for an essentially complete cure isn't a bargain compared to the cost of managing the disease? Probably a lot. Is it fair to decry such expensive drugs just on their price tag without looking at the facts? Probably not but I bet you it will happen.

Re: A million-dollar drug

#73

Post by DoreenMichele »

This is kind of a common issue with genetic disorders. When I was active on cystic fibrosis lists, sometimes articles were posted that said stuff like "It costs an average of $100k annually to treat CF" and parents would discuss it and go "That sounds low to me" and some older patient would chime in and say "Last year, my drug prescriptions alone were $100k. That's not counting the cost of doctor's visits and hospitalizations."

(Estimates in articles vary wildly. I searched briefly and just trying to find something that makes sense for like two minutes just makes me tired. So if you want to jump up and dispute that with some googled up article, I don't feel like arguing with you about it. I've already told you actual people living with the condition read those articles and go "Where on earth are they getting these ridiculous low ball figures???")

So then they come out with some very expensive drug that costs like a quarter million or more annually and it only treats around five percent or so of patients with CF. The price on Wikipedia [1] is currently listed at over $300k annually.

[1] https://en.wikipedia.org/wiki/Ivacaftor

And then who can afford that? If you have been sick your whole life, you probably don't have a lot of savings or a lot of ability to come up with big bucks, etc. You are probably deeply in debt and not making much money.

I don't know the answer. Conventional medicine doesn't really work for people with genetic disorders. It tends to be crazy expensive and also merely mitigates things somewhat. The standard expectation is that you will suffer a bit less and maybe live a bit longer, but you won't ever really be well.

So such people understandably want a cure. That's the holy grail for folks coping with genetic disorders.

I think there are potentially other avenues for some portion of people with genetic disorders. But I don't currently have the words for that and I get tired of being ganged up on by boatloads of internet strangers who want to inform me that I'm imagining things and my entire life experience is a hallucination and I don't actually know nothing about genetic anything. So let's just leave it at "I have this opinion and maybe it provides a way out of this trap and maybe it doesn't."

Because the current approach of inventing incredibly expensive drugs that might provide a cure is essentially failing as a method. And all other approaches are so awful it's why such things get labeled "dread diseases" -- because what it does to your life is so terrible that if a doctor were not prescribing it, it would be in violation of the Geneva Convention. It's just not humane.

Re: A million-dollar drug

#74

Post by quickthrower2 »

lisper wrote: post #53
mirkules wrote: post #42

Earlier quoted context omitted.

You can play this moral dilemma forever. If the one LPLD patient happens to be an expert in 3rd world diseases, then his death would lead to an even bigger tragedy. In reality, there is no dilemma. The people who can help are morally obligated to help in non-theoretical situations. If a child is drowning, and by jumping in I have to ruin my $5,000 watch which I would have otherwise later sold to help 100 children, my…

> You can play this moral dilemma forever. Yes, of course. That's the whole point. It's a very hard problem. > In reality, there is no dilemma. The people who can help are morally obligated to help in non-theoretical situations. Really? How much money have you donated to help provide clean drinking water to poor children in third world countries? > If a child is drowning, and by jumping in I have to ruin my $5,000 wa…

Not that uncommon. Seeing how many gadgets get sold e.g. iphones where the money could go to charity to save kids.

Re: A million-dollar drug

#75

Post by gus_massa »

JamesBarney wrote: post #56
rayiner wrote: post #47

Earlier quoted context omitted.

It's bad to analyze this issue through the medium of a long-form article, which wraps the story up in emotional narrative. Here is a better write-up in the MIT Technology review: https://www.technologyreview.com/s/601165/the-worlds-most-ex... . The gist of the problem is this: > The Amsterdam company spent more than $100 million testing the drug and carving a path through Europe’s medical rules and regulations, which…

But of that 100 million dollars the bulk was safety testing due to regulation. So you're right it doesn't make economics sense but for a specific reason. As a society we have to strike a balance between safety and efficiency. And I don't think we've struck the right balance. Many times erroring too much on the side of safety, especially with rarer and more fatal diseases without good current treatments.

Also the 100 million is used to distinguish between real medicine and snake oil.

Also, is this treatment better than the current treatment? How can you be sure without a clinical trial?

Re: A million-dollar drug

#76

Post by ericflo »

rayiner wrote: post #47
mabbo wrote: post #24

The point of the patent system is that we are giving inventors a time-limited monopoly on their invention in exchange for them sharing it with the world. We all benefit because we have access to this new invention and soon can make it ourselves, and the inventor has an incentive to promote and sell as much as they can while they own the monopoly. But it's not working here. The patent holder is effectively saying soci…

It's bad to analyze this issue through the medium of a long-form article, which wraps the story up in emotional narrative. Here is a better write-up in the MIT Technology review: https://www.technologyreview.com/s/601165/the-worlds-most-ex... . The gist of the problem is this: > The Amsterdam company spent more than $100 million testing the drug and carving a path through Europe’s medical rules and regulations, which…

> Viewing this after-the-fact leads one astray, into thinking there is some problem with the system

> The answer is probably that this drug doesn't make economic sense

You don't see it? The problem with the system is that we let economics drive these decisions.

Re: A million-dollar drug

#77

Post by ddingus »

lisper wrote: post #53
mirkules wrote: post #42

Earlier quoted context omitted.

You can play this moral dilemma forever. If the one LPLD patient happens to be an expert in 3rd world diseases, then his death would lead to an even bigger tragedy. In reality, there is no dilemma. The people who can help are morally obligated to help in non-theoretical situations. If a child is drowning, and by jumping in I have to ruin my $5,000 watch which I would have otherwise later sold to help 100 children, my…

> You can play this moral dilemma forever. Yes, of course. That's the whole point. It's a very hard problem. > In reality, there is no dilemma. The people who can help are morally obligated to help in non-theoretical situations. Really? How much money have you donated to help provide clean drinking water to poor children in third world countries? > If a child is drowning, and by jumping in I have to ruin my $5,000 wa…

Seriously?

Tell me how a person watches a child drown.

Sorry fam, next week I plan on donating to save 100 kids living in worse places than your dead kid lived in...

Actually facing a scenario like that, and the people involved plays out very differently.

Re: A million-dollar drug

#78

Post by [deleted] »

mirkules wrote: post #42
lisper wrote: post #20

Earlier quoted context omitted.

The last sentence of the article sums it up pretty well: "If it's not commercially viable to produce a certain therapy, unfortunately, in our Western society, it does not happen." And it is far from clear that this is not as it should be, because it's not just LPLD carriers about whom tear-terking stories can be told. $1M can be deployed in other ways that could potentially save more lives. Instead of "Sorry LPLD car…

You can play this moral dilemma forever. If the one LPLD patient happens to be an expert in 3rd world diseases, then his death would lead to an even bigger tragedy. In reality, there is no dilemma. The people who can help are morally obligated to help in non-theoretical situations. If a child is drowning, and by jumping in I have to ruin my $5,000 watch which I would have otherwise later sold to help 100 children, my…

[deleted]

Re: A million-dollar drug

#79

Post by infinite8s »

ericflo wrote: post #76
rayiner wrote: post #47

Earlier quoted context omitted.

It's bad to analyze this issue through the medium of a long-form article, which wraps the story up in emotional narrative. Here is a better write-up in the MIT Technology review: https://www.technologyreview.com/s/601165/the-worlds-most-ex... . The gist of the problem is this: > The Amsterdam company spent more than $100 million testing the drug and carving a path through Europe’s medical rules and regulations, which…

> Viewing this after-the-fact leads one astray, into thinking there is some problem with the system > The answer is probably that this drug doesn't make economic sense You don't see it? The problem with the system is that we let economics drive these decisions.

Economics drives all decisions. Economics is ultimately about allocation of a finite set of resources.

Re: A million-dollar drug

#80

Post by gus_massa »

DoctorOetker wrote: post #33

>"You need to maintain the factory, you need to do the paperwork, you need to test the product, you need to make new product batches all the time because product expires," he said. I'm pretty confident LPLD sufferers around the world would be prepared to move to the LPLD hot spot in Quebec, and work part time in the factory under proper supervision?

You can't put a bunch of untrained people in a drug factory and expect them to make a good job. You need some people with a Chemistry/Biology/Pharmaceutical degree, or some kind of specialization, or many years working in the industry.

Specially if it is a cutting edge factory with a technology that is being invented now and changes every month. Whatever that can be automated so anyone can make it without knowledge is probably automated.

It's like thinking that the Supreme court can fire all the technical staff, and the judges themselves can administer the web and mail server (perhaps with a little of help from some experts that come only once in a while).

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