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A million-dollar drug

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Re: A million-dollar drug

#161

Post by School-Cotton »

miguelrochefort wrote: post #154
School-Cotton wrote: post #116

Earlier quoted context omitted.

Reading the article has convinced me that drug patents in particular are a great idea. Isn't it wonderful that we live in a world where futuristic new treatments like this can be developed? Yes it's true that people can't get the drug now, but at least someday it might be available. Without patents, who would you find to work for free developing something like this?

> Isn't it wonderful that we live in a world where futuristic new treatments like this can be developed? This futuristic new treatment can no longer be developed or produced by ANYONE in the world, without the consent of this company. Before the patent, anyone could. Do you think that's not a problem? We'll incentivize researchers the same way we'll do with musicians and writers in a post-copyright society. People wh…

> Before the patent, anyone could

Anyone could, but nobody did, or would have without either a profit motive or massive state funding.

> Do you think that's not a problem?

Well it’s certainly not the most ideal thing you can imagine, but I don’t see a better way in a capitalist society to incentivize medical research. Do you?

> People who think this disease is important will crowdfund the research

I’m not aware of any crowdfunding campaign that has raised hundreds of millions of dollars.

> How do you think we should incentivize things like environmental research?

It should be funded by the state

> What if someone found a cure?

That’d be awesome. We should pay them incredibly handsomely for their work.

Re: A million-dollar drug

#162

Post by rasz »

School-Cotton wrote: post #108
torpfactory wrote: post #32

Earlier quoted context omitted.

Especially for lifesaving medical patents. If the drug isn’t being produced, or the price is too high (I don’t know how this would be defined), governments should be empowered to seize the IP and solicit bids to produce the invention. We move heaven and earth to save lives in natural disasters, why do we move so slowly with certain medical conditions?

Then nobody would ever bother investing in new drug development. A better model would be for the state to fund this research and have the results be public domain.

Not nobody, just purely for profit rent seekers.

Re: A million-dollar drug

#163

Post by pdkl95 »

derefr wrote: post #91
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…

The drug didn't cost $100 million to make. It cost $100 million to prove that it works in order to get it approved for sale in Europe . In a world where you could just put a drug on the market (where "the market" is, say, hospitals), the drug would have cost far less, and so the inventor would need to recoup far less. Note that I'm not arguing for complete deregulation of drug manufacturing. Testing for product integ…

> (without intention of standards-body registration) as long as the prescribing doctor is willing

Unfortunately, the doctor (or scientist) cannot be allowed to make that decision on their own. There are far too many terrible examples in the not-very-distant past where doctors testing a new type of treatment drifted away from legitimate research into unethical experimentation[1], patient abuse, even torture and eugenics. Yes, most doctors wouldn't but the unusual-long length of the Wikipedia page [1] is why it's important to say "this is why we can't have nice things" require external approval.

That said, this approval are primarily concerned with preventing unethical experimentation and limiting the damage when the testing goes horribly wrong. Oversight of ethical issues and experimental technique should, in theory, be a lot simpler[2] and cheaper than the higher standard of proving that a new drug is "safe enough".

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

[2] I know IRB approval isn't going to be "simple" for any type of experiment involving humans. It's easier than getting full FDA or EU approval.

Re: A million-dollar drug

#164

Post by refurb »

ineedasername wrote: post #144
tptacek wrote: post #35

People are fixated on the price for this drug, but the article itself is pretty clear on the rationale for the price tag: current alternative therapies have a price tag of up to $300k/yr, indefinitely. This drug is a one-time therapy. Presumably, any health system would jump at the chance to replace a $300k/yr recurring charge with a 1-time $1MM fee. But they don't. Health systems in Europe apparently refuse to pay f…

Except as a result of the price tag, they priced themselves out of the market and any possibility of revenue. That is not a rational. And efficacy isn't really in question: Perfect cure or not, it has a vast increase in quality of life including the ability to have children, avoid pancreatitis, and enjoy alcoholic beverages to name a few. If insurance companies are covering replacement therapy to the tune of $300,000…

I don’t think they priced themselves out of a market. Uniqure set the list price at $1M. In Europe each country negotiates their own drug price, so the real price would have been even lower than $1M.

I’m going to speculate that the drug just wasn’t that good, so the demand wasn’t there and the program folded.

I know Germany pays close to $1M for a specific hemophilia therapy and they pay that annually. The price itself wasn’t the issue, this it must have been the drug itself.

Re: A million-dollar drug

#165

Post by tptacek »

refurb wrote: post #138
tptacek wrote: post #35

People are fixated on the price for this drug, but the article itself is pretty clear on the rationale for the price tag: current alternative therapies have a price tag of up to $300k/yr, indefinitely. This drug is a one-time therapy. Presumably, any health system would jump at the chance to replace a $300k/yr recurring charge with a 1-time $1MM fee. But they don't. Health systems in Europe apparently refuse to pay f…

Actually, single payers in the EU are much better equipped to pay $1M now to save $300k/yr in perpetuity. All medical spending comes from one big pile. In the US, not people don’t stay with the same health plan for more than 2-3 years. So why would an insurance company pay $1M when they get 2-3 years of pay back, then the next insurer gets a free ride? I know there is an MIT prof who is pushing the idea of something…

Yeah, I'm not saying it doesn't make sense or that the EU wouldn't do it. I'm saying they aren't doing it, because the treatment is of unclear efficacy.

Re: A million-dollar drug

#166

Post by tptacek »

DoreenMichele wrote: post #137
ctdonath wrote: post #136

Earlier quoted context omitted.

A thing is worth what another will pay for it.

"Your money or your life?" doesn't seem like a wonderfully ethical medical question when aimed at folks who probably cannot afford it even if it is a cure, adds decades to their life and you are willing to take installment payments.

Yeah these are fun rants and all, but as the article itself states, EU health systems are already paying for a much more expensive alternative therapy. That they are not paying for this one says less about the price than it does about the utility of the treatment.

Re: A million-dollar drug

#167

Post by DoreenMichele »

tptacek wrote: post #166
DoreenMichele wrote: post #137

Earlier quoted context omitted.

"Your money or your life?" doesn't seem like a wonderfully ethical medical question when aimed at folks who probably cannot afford it even if it is a cure, adds decades to their life and you are willing to take installment payments.

Yeah these are fun rants and all, but as the article itself states, EU health systems are already paying for a much more expensive alternative therapy. That they are not paying for this one says less about the price than it does about the utility of the treatment.

It isn't a rant and there is nothing whatsoever "fun" about the topic for anyone who has a genetic disorder.

Re: A million-dollar drug

#168

Post by SilasX »

ericflo wrote: post #123
SilasX wrote: post #95

Earlier quoted context omitted.

But what is “these” and why would the same points not apply? The fewer people that are suffering a given disease, the lower return to curing it. Moralizing doesn’t change that; it just means you’re willing to prioritize it over cures that help more people. Yes, creation of disease cures is a tragedy of the commons, but the point is that there are worse tragedies of the commons. What consistent, defensible decision pr…

It seems we agree in principle on tragedies of commons - that in edge cases where normal rules of economics produce lethal externalities, we should intervene. My original comment was simply pointing out that it is not inconsistent to blame the system for these lethal externalities. Where and how we draw the lines on where to break from economic decisionmaking and into moral decisionmaking is a way, way bigger topic.

I'm sorry, but no, you don't have a basis for concluding that from my responses or the thread.

In my previous comment, I just explained to you why -- even accepting that there are these disease victims you want to care for -- you still wouldn't necessarily have a justification for allocating resources toward a cure for this disease. After all, there are far worse tragedies of the commons: diseases that affect far more people, and that even European governments believe merit a higher priority.

To wave a wand and say "oh, we should throw money at this rare disease", you're saying "we should throw less money at the things that are impacting far more people". (Or, worse, you're saying we should throw unbounded money at all problems, the very charge I originally made!)

And you still haven't even explained under what criteria you would do anything differently, let alone why those criteria would be any better.

So no, you don't get to claim a moral high ground, or that "economic thinking" led to the wrong decision. Not when you can't even explain what exactly the moral error is, or why.

Re: A million-dollar drug

#169

Post by [deleted] »

tptacek wrote: post #35

People are fixated on the price for this drug, but the article itself is pretty clear on the rationale for the price tag: current alternative therapies have a price tag of up to $300k/yr, indefinitely. This drug is a one-time therapy. Presumably, any health system would jump at the chance to replace a $300k/yr recurring charge with a 1-time $1MM fee. But they don't. Health systems in Europe apparently refuse to pay f…

[deleted]

Re: A million-dollar drug

#170

Post by tptacek »

DoreenMichele wrote: post #167
tptacek wrote: post #166

Earlier quoted context omitted.

Yeah these are fun rants and all, but as the article itself states, EU health systems are already paying for a much more expensive alternative therapy. That they are not paying for this one says less about the price than it does about the utility of the treatment.

It isn't a rant and there is nothing whatsoever "fun" about the topic for anyone who has a genetic disorder.

Sure, I wasn't sure about the word "rant". You can substitute any other word you'd like that somehow captures "not having anything whatsoever to do with the article we're commenting on or, for that matter, the subject of that article".
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