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Comment by _qua | Hacker News Reader

Given the resources consumed by sickle cell patients, who often require multiple lengthy hospitalizations I bet it would be close to breakeven even at this price

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The cynic in me says that it was probably priced to cost exactly the same as the expected lifetime expense of treating of the disease.

In fact this is exactly how they set the price for these curative treatments. Gargantuan sums but hypothetically on average cheaper than the overall lifetime costs of living with the disease. Lots of recent debates on this in the world of Hepatitis C.

pricing like that only lasts as long as the patent, the argument being that without the opportunity for that pricing, the research for the drug would not be worthwhile in the first place.

I'm not arguing this is true, but I wouldn't accept a counterargument based on "but it's people, it's people, think of the children"

Here are some other counterarguments:

- Most formal drug research, today, is already not worthwhile. The norm is that you spend several billion dollars and recover nothing.

- Most achievements that were worthwhile in retrospect were not worthwhile prospectively. Therefore it is not obvious that things need to be worthwhile prospectively in order to be done. Going into a career as a rock star is, objectively, stupid. But we have a huge supply of wannabe rock stars anyway.

It’s probably one of the precious few arguments where “think of the children” is actually valid.

A more charitable interpretation might be that getting under the cut off is why it's one of the first treatments available. More treatments will become available as the overall costs start beating out the costs of living with $disease.

Would insurances cover it on the basis like that? I wonder if there is any similar medicine that is covered for a similar total treatment reason.

The recent curative hepatitis treatments have paved the way for this. There are a variety of different approaches including statewide cost sharing funds that pool the cost across all the insurers in the state.

IIRC, single-payer health care systems like the NHS do functionally the exact same thing, which allows them to negotiate significant discounts. I remember reading about a gene therapy for a type of leukodystropphy that was in the millions of dollars, but got negotiated down. [1]

https://www.england.nhs.uk/2023/02/first-baby-receives-life-...

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