If it works but it's not economically-viable: the moral and ethical choice is to open-source it or give it to a non-profit medical foundation. It sucks to have a rare disease because there isn't enough profit to recoup r&d; this is where non-profits, NGOs and GSEs should advance medicine where big pharma trades lives for profits.
A million-dollar drug
181–190 of 215 posts
Re: A million-dollar drug
#182Earlier quoted context omitted.
Did you need immunosuppressive treatment?
Nope, and I didn’t have any noticeable immune response. Literally no side effects to speak of, it was all very easy, just a simple injection and overnight stay in the hospital for monitoring. They tested me before for immunity to the virus family they engineered, to make sure I didn’t already have immunity. Other than that they are monitoring my liver closely but there hasn’t been any elevation in blood tests or stru…
The hell with bioethics hand-wringers... we should be mending and improving people's genes whenever and wherever we can add net good.
Re: A million-dollar drug
#183Earlier quoted context omitted.
Did you need immunosuppressive treatment?
Nope, and I didn’t have any noticeable immune response. Literally no side effects to speak of, it was all very easy, just a simple injection and overnight stay in the hospital for monitoring. They tested me before for immunity to the virus family they engineered, to make sure I didn’t already have immunity. Other than that they are monitoring my liver closely but there hasn’t been any elevation in blood tests or stru…
How was the recovery process? Did you feel better immediately or was it in small amounts and over several weeks?
Re: A million-dollar drug
#184Earlier quoted context omitted.
What I think is happening is that the number of affected people is so low and the cost of producing this small number is very large and the company does not want a profit but a BIG profit.
If a company does not make use of a patent they should at least loose their right to it.
> If a company does not make use of a patent they should at least loose their right to it.
Someone can always try and license the rights from them, if they think they can do a better job making money off of them. Problem is, I bet nobody else was interested in licensing it from them at any reasonable price, because they would have the same problem: the market just isn't there, at any price that would make it worth it to produce.
Re: A million-dollar drug
#185Earlier quoted context omitted.
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.
> Not nobody, just purely for profit rent seekers.
This is not an example of "rent-seeking behavior", which is a technical term with a specific meaning. It's not merely a synonym for "profit-maximizing behavior which I don't like".
Re: A million-dollar drug
#186The 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…
> 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.)
How many people with lipoprotein lipase disorder in the US actually don't have health insurance?
I get that it's a common meme to talk about people in the US not having health insurance, but instead of just throwing that around as a presumed fact, it needs substantiation, especially when we're talking about a very small number of people in the first place, all of whom are suffering from a congenital, chronic condition that already requires expensive treatment to manage.
Re: A million-dollar drug
#187Earlier quoted context omitted.
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.
But that doesn’t have much to do with the price. Your comment sounded like you were saying the eu was being cheap.
I thought it sounded like quite the opposite: he's not saying they aren't buying it because they're cheap (he points out that if it worked, and they were trying to be cheap, they would buy it). He's saying they're not buying it because it might not work very well.
Re: A million-dollar drug
#188That's probably the greatest example of the issue that Open Longevity was going to solve by combining patient organization with ICO funding to conduct clinical trials without profit driven big pharma. Unfortunately, that didn't happen…
Re: A million-dollar drug
#189> Pricing shouldn't be a political decision. It should be a rational decision based on merits and values," he said.
The money quote. A rational decision? Maybe. Exactly what merits? Exactly which values?
"Hundreds of millions of investor money has gone into the company"
But none of that led to the development of the drug.
Re: A million-dollar drug
#190People 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…
> alternative therapies have a price tag of up to $300k/yr
So prices should all float to the maximum of the most inferior product, so that consumers do not have a choice?
How would you like that if it happened in your favorite consumer category?
That's like saying computer memory should never get cheaper (there is alternative memory priced at much higher rates!), or that electric vehicles should always be priced at the cost of the initial entrants, despite economies of scale