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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

#41

Post by deadbabe »

nwiswell wrote: post #34
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 many other countries, patents do not apply to personal use, where there is no sale. Since Trikafta is a blend of 3 small-molecule drugs, is it possibly feasible to publish a do-it-yourself synthesis process? Or perhaps the community could even come together to set up a lab, where individuals could travel and go through the motions to produce their own? I recognize this isn't ideal, but it might be legal...

If you’re going to do all that why bother with legality, just push pills on a black market.

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

#42

Post by 0xB31B1B »

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…

drugs are priced differently country to country and the price has nothing to do with the unit cost to manufacture. The US is the least regulated pharmaceuticals market in the world and drugs here usually cost significantly more than drugs in other locals. For example semaglutide/ozempic costs like 1300/month in the US, but only 100-200/month in European countries. Also, the "1300/month" cost in the US is only paid by people who are paying cash and not covered by insurance, if the drug is covered by the patients insurance than the Pharmacy benefits manager usually pays a fraction of the 1300/month price as it is a "bulk negotiated discount, so they often pay 200-300 USD, the actuall price in these deals is a closely guarded trade secret.

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

#43

Post by BurningFrog »

xenospn wrote: post #25
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”).

Or the country decides to not import the medicine due to the cost.

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

#44

Post by paulpauper »

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.…

weight gain. With CF the pancreas is blocked, so you lack in digestive enzymes, and it's a struggle to maintain a healthy enough weight to battle respiratory infections. After Trikafta, I gained some 30 pounds, and have a big belly on my small frame

This seems like a no-brainer way to treat obesity, by restricting or blocking such enzymes. Obviously the downside is diarrhea and other malabsorption symptoms, but obese people have too much nutrition. Blocking absorption seems easier than dieting, as no willpower required. You shit out the undigested food.

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

#46

Post by SEJeff »

clumsysmurf wrote: post #35

I wasn't able to read the article (behind paywall) but this was also in the news recently, related to CF & Zn. https://newatlas.com/medical/zinc-lung-macrophages-anti-bact...

The internet archive has your back. Here is TFA: https://archive.is/gD49J

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

#47

Post by [deleted] »

Aurornis wrote: post #14
gfodor wrote: post #11

Earlier quoted context omitted.

I have CF, and my whole life I avoided things like CF communities explicitly because I felt these ties to the disease would lead to a crisis in my life if it was ever something I could stop centering my life around.

Chronic illness forums are almost universally terrible. I try to navigate the online communities for a family member’s disease to keep up with new developments. A decade ago I found some value in the way they presented news and research and anecdotes. Now, the forums are overrun by small numbers of constantly online members who feel the need to dominate every conversation. The content has become almost entirely venti…

[deleted]

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

#48

Post by Aloha »

ForHackernews wrote: post #27
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…

I suspect very strongly at 300k a year, its still cheaper than treating CF via existing means.

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

#50

Post by pedalpete »

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.…

Can you elaborate on the weight gain? I'm curious why that is a downside of the Trikafta? You say with CF the pancreas is blocked, so why did the weight come as a side-effect of the drug, and not with the disease initially?
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