[d136o]

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?

[DoreenMichele]

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.

[isoprophlex]

Discussing the value of a human life, and figuring out how much the many are willing to sacrifice in order to treat the needy few, isn't something that should be out of bounds.

I don't think the voices of the few should be silenced.

Its uncomfortable maybe, but I think not a discussion to avoid.

[imtringued]

Our economic system requires endless amounts of busy work. If that busywork doesn't exist people will compete for a handful of jobs because they cannot comprehend the idea of doing less work per person.

If that busy work consists of keeping people alive and advance medical science it's at least a better use of human potential than working via door dash.

[dodobirdlord]

It is in fact too cynical. The company that wanted to sell this drug isn’t the same as the companies selling recurring treatment to people with this disorder. Your cynicism has blinded you to the fact that the marketers of this drug do not have any economic motivation to do what you are suggesting. Their economic motivation is to sell the tiny number of doses required to treat everyone in the first world (2,000-3,000) at a price high enough to recover their investment and make a profit.

[mmazing]

Why not look for funding from the many sources of grants and charities that might not care about economic motivation?

Your comment seems very defeatist. Actually this whole thread seems defeatist.

[s1artibartfast]

There are not many charities and grants willing to shell out a million dollars to improve one persons quality of life.

[refurb]

No, because other gene therapies like Zolgensma are priced at $2.5M for a single dose and selling quite well. There is a huge market for these types of cures.

[kkjjkgjjgg]

Article explicitly mentions price is high because there are no recurring costs, so it actually isn't more expensive than other treatments that may cost hundreds of thousands every year.

Iirc economists have estimated that a human life is valued around 3M$ by society (a couple of years ago, probably higher now), the price doesn't necessarily seem too high.

[kungito]

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

[14]

No that is not what they implied just that so far it has only been 10 years. These people are still healthy but the company can't say it lasts 30 years because no one has lived long enough to see if it does. It may last indefinitely.