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Cystic fibrosis breakthrough has given patients a chance to live longer

theatlantic.com

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Re: Cystic fibrosis breakthrough has given patients a chance to live longer

#21

Post by bruce511 »

Trikafta is a real breakthrough for CF patients. What's not mentioned is the cost - about $300 000 per person per year. [1]

In 2037 the patent will run out, and the generic price will likely be 90% less.

Fortunately, for Americans with good-enough health insurance, it's covered, so ... yay? For those without insurance, or in other countries where $300k is basically unaffordable, well bummer for you, you'll be the last generation to die of it.

I get the insane costs, and risks, of developing these things. I get that the profit motive is what drives there to be any research at all in pharma. I get that the price has to be high for everyone, or insurance companies will balk.

And yet, even knowing all that, there's a sour taste when we -could- (literally) save lives, but, well, money first ya-know...

I don't have an answer to this issue- there are downsides to all proposals I've heard. But this approach seems, well, pretty harsh.

[1] https://www.statnews.com/2023/11/03/trikafta-cystic-fibrosis....

Re: Cystic fibrosis breakthrough has given patients a chance to live longer

#22

Post by orzig »

I loved the book The Billion Dollar Molecule (Reviewed by Nature here: https://www.nature.com/articles/nbt0594-521.pdf) about the founding of Vertex Pharma. Really drives home the amount of money, time and luck it takes to make a breakthrough - the author needed to write an entire second book to get to the part where they started making real revenue. The second book isn't as good, but if you like the first enough you might try it anyway.

Re: Cystic fibrosis breakthrough has given patients a chance to live longer

#23

Post by BenFranklin100 »

This article gives short shrift to the role the pharmaceutical industry played in making this life-changing treatment a reality. It barely mentions Vertex. Vertex is the biotech company that made the big bet on cystic fibrosis, a rare disease that most companies wouldn’t touch because of the small market and unknown biology made it too risky. They were the ones that believed in the science and developed multiple CF drugs and got them into the hands of patients. Here’s a 2019 STAT article that gives a fuller account of Vertex’s role:

https://www.statnews.com/2019/10/23/we-conquered-a-disease-h...

Re: Cystic fibrosis breakthrough has given patients a chance to live longer

#24

Post by elektor »

bruce511 wrote: post #21

Trikafta is a real breakthrough for CF patients. What's not mentioned is the cost - about $300 000 per person per year. [1] In 2037 the patent will run out, and the generic price will likely be 90% less. Fortunately, for Americans with good-enough health insurance, it's covered, so ... yay? For those without insurance, or in other countries where $300k is basically unaffordable, well bummer for you, you'll be the las…

"In 2037 the patent will run out, and the generic price will likely be 90% less."

Unfortunately, that's not guaranteed to bring a price drop. Humira is a good example of that; it recently went generic but much of the savings went to higher rebates to pharmacy benefits managers.

Some reading for anyone curious:

https://www.reuters.com/business/healthcare-pharmaceuticals/...

Re: Cystic fibrosis breakthrough has given patients a chance to live longer

#25

Post by xenospn »

bruce511 wrote: post #21

Trikafta is a real breakthrough for CF patients. What's not mentioned is the cost - about $300 000 per person per year. [1] In 2037 the patent will run out, and the generic price will likely be 90% less. Fortunately, for Americans with good-enough health insurance, it's covered, so ... yay? For those without insurance, or in other countries where $300k is basically unaffordable, well bummer for you, you'll be the las…

In other countries this will be covered by the social safety net (that doesn’t exist in the US, hence the need for “good-enough health insurance”).

Re: Cystic fibrosis breakthrough has given patients a chance to live longer

#26

Post by vkou »

COGlory wrote: post #6
bdcravens wrote: post #4

I have CF, and I take Trikafta. Before Trikafta, I usually had a 5+ day stay in the hospital every year, and sometimes I have would very stubborn respiratory infections that just wouldn't go away. I was mentally preparing myself for inevitable decline and eventual death. Trikafta changed my situation dramatically. I've had no hospitalizations, and most the classic CF symptoms are either gone or extremely diminished.…

Sorry for the potentially insensitive question, but I really am wondering about this: >One side effect I should mention: many report extreme anxiety. However, I was starting an anxiety medication for the first time (something I should have done 20 years ago, but alas ...) and so those effects were muted or hidden to me. I would have imagined that most people with CF already had extreme anxiety - wondering when the in…

People generally get acclimated to the situation they are in.

If you have anxiety over money, for instance, you'd probably still have it, regardless of whether you had $15,000 in your bank account, or $15,000,000.

Re: Cystic fibrosis breakthrough has given patients a chance to live longer

#27

Post by ForHackernews »

bruce511 wrote: post #21

Trikafta is a real breakthrough for CF patients. What's not mentioned is the cost - about $300 000 per person per year. [1] In 2037 the patent will run out, and the generic price will likely be 90% less. Fortunately, for Americans with good-enough health insurance, it's covered, so ... yay? For those without insurance, or in other countries where $300k is basically unaffordable, well bummer for you, you'll be the las…

It is mentioned. Quoting directly from this piece...

> Or stopped being covered by insurance? Trikafta’s sticker price is more than $300,000 a year. Insurance typically covers most of that cost—minus what can be significant co-pays and deductibles—and Vertex offers co-pay assistance. But patients’ lives ultimately depend on decisions made by nameless bureaucrats in rooms far away: Insurance plans can suddenly change what they cover, and in 2022, Vertex announced that it would substantially reduce its financial assistance.

Re: Cystic fibrosis breakthrough has given patients a chance to live longer

#28

Post by ForHackernews »

bdcravens wrote: post #5

Interesting note about Trikafta and other advancements in cystic fibrosis: the Make a Wish Foundation announced that children with CF now no longer automatically qualify for their program due to the advancements in care. https://wish.org/cf-update

This is also mentioned in the article:

> Recently, Make-A-Wish announced that children with CF would no longer automatically be eligible for the program, because “life-changing advances” had radically improved the outlook for them.

I know this is a long piece, but half the comments in this thread seem like people didn't even bother to read it before commenting...

Re: Cystic fibrosis breakthrough has given patients a chance to live longer

#30

Post by jeremiahbuckley »

BenFranklin100 wrote: post #23

This article gives short shrift to the role the pharmaceutical industry played in making this life-changing treatment a reality. It barely mentions Vertex. Vertex is the biotech company that made the big bet on cystic fibrosis, a rare disease that most companies wouldn’t touch because of the small market and unknown biology made it too risky. They were the ones that believed in the science and developed multiple CF d…

Thanks for this. Very cool to read these types of stories.
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