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A million-dollar drug

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Re: A million-dollar drug

#41
> The problem was the price.

I thought that drug patents were basically illegal in India. It seems there’s a huge market there for this kind of thing. An abandoned drug with a huge price tag.

Also I’m not terribly worried. The patent will wear off eventually and then anyone can make it.

Re: A million-dollar drug

#42
post #20

"Well, one pharma company has the patent, and we need to let them charge what they think the market will bear. Sorry LPLD carriers, you have to die now." Apparently, this is the best the world can manage in 2018.

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 moral obligation is still with the immediate need of this drowning child.

There is a very good podcast about this very issue: https://itunes.apple.com/us/podcast/philosophy-bites/id25704...

Re: A million-dollar drug

#43
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…

Patent was and is always like that. We have a massive improvement on 3D printer and VR display because... the patent expired.

Patent is a system to freeze the invention from society for 20 years.

But in this case, patent alone is not on the blame. Still we need to change the patent system something like the patent holder must offer patented product or license the patent for reasonable price or face losing the patent.

Re: A million-dollar drug

#44
post #20

"Well, one pharma company has the patent, and we need to let them charge what they think the market will bear. Sorry LPLD carriers, you have to die now." Apparently, this is the best the world can manage in 2018.

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 make some good points.

I'm not anti- all patents. Let's say, for example, a pharma patent worked more like a trademark: if you aren't going to use it (or maybe, if you abuse it), you lose it. Then we wouldn't have to trust this one company's opinion on whether it is "commercially viable" or not.

Maybe that's a bad idea. I'm not a lawyer, and I don't work in medicine. I just doubt what we have now is the best of all possible worlds. Intellectual property laws are supposed to be a net benefit.

Re: A million-dollar drug

#46
post #39
post #9

This seems bizarre to me: Van Deventer says the company never considered lowering the price. "Why would we? Pricing shouldn't be a political decision. It should be a rational decision based on merits and value." If no one will pay $1 million, your revenue is $0. Assuming the drug costs much less than $1 million to make, surely any revenue number is better than $0?

I don't think he understands pricing at all. Market price isn't arrived at via a rational process. It's an inherently social process arrived at by negotiation between producers and consumers. And it's especially weird that he thinks pricing shouldn't be political when his product has a government-granted monopoly and the bulk of its customers will be government-run health-care systems and government-licensed insurers…

> Sure, there's a real question of how to pay for treatments for rare diseases. But the millions in development are a sunk cost. To take his ball and bat and stomp off would be disappointing in any circumstances. But when people will die because of it?

If people actually cared about treating patients, they would be crowdfunding that treatment rather than trying to fleece the people who invested man-decades of work into developing them, and who bear the mandatory cost of following these patients forever.

How about we just stop developing drugs, and live and die by the same ailments for the rest of time, as the patents expire. That would stop people from shifting the goalposts so dramatically every time somebody gets off their ass to actually produce a treatment.

The potential cost of care will continue to rise as long as we develop treatments for previously untreated or undertreated ailments; and it seems like the potential for care haunts people by giving the impression that they're being deprived of something, when the alternative is really that the treatment would not exist if insurers (government or private) would not be willing to pay something close to that much for it.

These people are dead without treatment, whether it's because of pricing (and insufficient social support [it could be literally impossible to fund all therapies of this sort for all patients]), or because the researchers were discouraged from ever developing it. The pricing is not arbitrary, so your only two options are a) don't develop it, and therefore never realize the moral hazard, or b) develop it, and market it to justify the work, so that you can do the same in the future, and treat at least some people, hopefully being able to reduce the cost of treatment in the future.

Re: A million-dollar drug

#47
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 weren’t geared to consider a new technology like gene therapy. Initially, for instance, regulators said they expected a clinical trial of 342 patients. Executives wryly noted that there were only 250 people with the disease in all of Europe.

> Nor has Glybera convinced the national regulators in Europe who decide what drugs get reimbursed. Last year, French authorities said they would not pay for the drug. Germany judged Glybera’s benefits “non-quantifiable.” It leaves doctors and insurers to make decisions on a case-by-case basis.

Here's a drug that cost $100 million to make, and will require even more money to move through clinical trials in the U.S. And the pool of potential patients is a less than 1,000 people, and oh many of then can't pay either because they lack insurance (U.S.) or the cost/benefit panel math doesn't work out (Europe).

Viewing this after-the-fact leads one astray, into thinking there is some problem with the system that leaves this potential cure out of the hands of patients. Patents, money, it's all just a proxy for effort in, benefit out. Even if you had the government make this drug, you're talking huge amounts of money per patient, which few governments would pony up. (And rightfully so, because you could save a lot more lives with that amount of tax dollars.) The answer is probably that this drug doesn't make economic sense, and the abandonment of it by the maker is just an indication that it was a misguided effort to begin with.

Re: A million-dollar drug

#48
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…

Interesting post. Hopefully some innovators can come through and figure out a way to make it more cheaply. Even if it's expensive now, if humans exists for 100's of years, then eventually the price will come down when this inventor is toast, right? Either that or people will figure out cheaper, DIY ways to do some of this biological manipulation.

Based on article the price is not at 1M because of high manufacturing costs, but because they want to have return on the investment made during the research and development phase.

Re: A million-dollar drug

#49
post #8

in society, we have another large, one-time purchase people often make in which there are special financial arrangements and rules: buying a home. it seems to me that gene therapies (high priced, one-time use drugs) are going to warrant alternative financial instruments. there's absolutely no reason this drug should have failed when the amortized cost over 10 years is less than an inferior product. regardless of the…

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 still very low so in general debt is seeking out risk.

Re: A million-dollar drug

#50
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…

>We all benefit because we have access to this new invention and soon can make it ourselves

Two decades is not "soon".

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