The million-dollar drug (2018) • Hacker News Board

Re: The million-dollar drug (2018)

#11

Post by d136o » Sun, Nov 21, 2021, 5:56 AM UTC

DoreenMichele wrote: post #4

I wish I knew why these patients can't have alcohol. I mean the biological mechanism. What the relationship is between misprocessing fat and alcohol being deadly.

I am equally curious. Fatty liver can be a consequence to high alcohol consumption, but people can also have NAFLD. My guess (IANADr) is that alcohol leads to excessive build up of fat in their bodies.

NAFLD is also highly correlated with diabetes, so I wonder if there could be something to learn from studying this or related genes.

Re: The million-dollar drug (2018)

#12

Post by d136o » Sun, Nov 21, 2021, 5:58 AM UTC

It seems to me that it’s not just the price of a single treatment that is too high, but also that the patients are fully recovered and don’t have to pay a recurring annual subscription fee to live normal lives. Or is that too cynical?

Re: The million-dollar drug (2018)

#13

Post by DoreenMichele » Sun, Nov 21, 2021, 6:01 AM UTC

d136o wrote: post #12

It seems to me that it’s not just the price of a single treatment that is too high, but also that the patients are fully recovered and don’t have to pay a recurring annual subscription fee to live normal lives. Or is that too cynical?

Or is that too cynical?

My, you innocent child, that you have to ask this.

(I have a genetic disorder commonly treated with one of those drugs that cost $300k annually.)

Edit: I was going to delete this in short order but now that it's flagged, I'm leaving it. People with genetic disorders get all kinds of hatred from the world and medical system for just wanting to be healthy and how dare we say that online.

Re: The million-dollar drug (2018)

#14

Post by [deleted] » Sun, Nov 21, 2021, 6:05 AM UTC

d136o wrote: post #11

DoreenMichele wrote: post #4

I wish I knew why these patients can't have alcohol. I mean the biological mechanism. What the relationship is between misprocessing fat and alcohol being deadly.

I am equally curious. Fatty liver can be a consequence to high alcohol consumption, but people can also have NAFLD. My guess (IANADr) is that alcohol leads to excessive build up of fat in their bodies. NAFLD is also highly correlated with diabetes, so I wonder if there could be something to learn from studying this or related genes.

[deleted]

Re: The million-dollar drug (2018)

#15

Post by jagger27 » Sun, Nov 21, 2021, 6:19 AM UTC

I can’t imagine how hard it must be for the dozens of people out there suffering from this rare ailment knowing a perfect cure/treatment is possible but not worth it for the shareholders.

Re: The million-dollar drug (2018)

#16

Post by stefan_ » Sun, Nov 21, 2021, 6:27 AM UTC

Never mind non-practicing entities for software patents, but surely for patents on medicine keeping them valid when no one is making any is entirely bogus and not deserving of legal protection?

Re: The million-dollar drug (2018)

#17

Post by at_compile_time » Sun, Nov 21, 2021, 6:30 AM UTC

How long does the patent last? It should be made available as a generic drug when the exclusivity period elapses, right?

Re: The million-dollar drug (2018)

#18

Post by flipbrad » Sun, Nov 21, 2021, 6:32 AM UTC

"Use it or lose it" / compulsory licensing doesn't seem like a terribly bad idea sometimes.

Re: The million-dollar drug (2018)

#19

Post by kungito » Sun, Nov 21, 2021, 6:32 AM UTC

d136o wrote: post #12

It seems to me that it’s not just the price of a single treatment that is too high, but also that the patients are fully recovered and don’t have to pay a recurring annual subscription fee to live normal lives. Or is that too cynical?

Doesn't it say 10 years? So you'd need a few more during your life

Re: The million-dollar drug (2018)

#20

Post by spoonjim » Sun, Nov 21, 2021, 6:43 AM UTC

exhilaration wrote: post #5

I'm confused, they say it was priced at $1 million because that was what they felt the drug was worth compared to the ongoing therapies needed to keep these patients alive. Ok fine. But once it became clear no one was going to pay that price, wasn't there some lower price that would still earn them a profit?

There's also the very small market for the drug. There's a lot of administrative and logistics cost in making a drug available on the market. If they could sell 1,000 doses a year they would have found a price that worked.