51–60 of 215 posts
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…
Earlier quoted context omitted.
What if governments paid for the clinical trials?
The government does frequently fund the discovery of new drugs. The problem is that the return on that investment is usually abysmal and the taxpayer ends up not only paying to fund the drug’s discovery, but also paying absurdly high prices to buy it from pharmaceutical companies who passed some or all of their risk onto taxpayers. One example: https://abcnews.go.com/WNT/YourMoney/story?id=129651
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…
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 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.
Really? You would sacrifice 100 to save 1? That's a very peculiar moral calculus you have there.
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…
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…
I think the reason this particular drug didn't make economic sense was touched on in the article but not highlighted: the drug approval process is designed for drugs, not new technology.
The price of a new gene therapy technology applied to a small pool of people can't justify it's cost of bring to market.
There are plenty of cases where drug company's inflating their margins using phantasmal threats of "R&D" costs on a condition that effects millions, but in this case it seems like the economics were unfortunately not feasible.
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…
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.
As sad as this story is, the silver lining is that patents expire, and 20 years from the patent filing point (probably 5-10 years from now?), patients will be able to be affordably cured. It sucks but is better than nothing.
The story is clear: the problem is not the patent itself but the cost of passing regulation hurdles and maintaining a plant producing the drug when there is suck low demand. No one will invest in this even after the patent expires. The best the patients could hope is to group togethr to get some done produced?
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…
This is an excellent response and you clearly understand the issue well. I'm curious though, what do you think about the long term effects of continuing to practice gene therapy? Sure, the cost for treating the first few patients will be exorbitant but wouldn't we expect researchers to find ways to bring costs down over time? How will we know if this is even possible if we abandon gene therapy at such an early stage?…
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…
Are you suggesting that prices don't have anything to do with scarcity and are just set arbitrarily by social forces? That doesn't seem quite right.
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…
If a patent holder is not producing the patented thing, and not licensing it to someone else who is, the patent should expire. Kind of like a trademark that is not defended. Seems that would fix the problem?
There's nothing stopping people from manufacturing the drug for personal use, other than that it's likely extremely hard to make.