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Cystic fibrosis breakthrough has given patients a chance to live longer

theatlantic.com

71–80 of 151 posts

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

#71

Earlier quoted context omitted.

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.

Yeah.

In all seriousness, you can buy the APIs directly from China/India and compound them yourself. It's easy and dirt cheap, in most cases. This is typically how underground steroid labs and other illicit pharmacies work. It's in some cases how legitimate compounding pharmacies work.

So how do you know what you're getting is pure, or even real? Simple, before shipping it to the US, you send it over to an analytical lab in China and have them run GC/MS or LC/MS on the chemical raw material. Since it's supposedly a pure compound, that should be easy, and there's very rarely any ambiguity as to the results. This also ensures that you're not inadvertently importing anything on the DEA's scheduled list.

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

#72
post #67

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.…

Reading your comment, I was certain I remembered it - and I see that you've now added a link to its previous home. So I just wanted to say: it was an impactful piece of writing, enough so that I remembered it quite clearly after a single read these few months ago.

Thank you. My aim isn't to wax poetic or elicit sympathy, but to provide insight for others.

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

#73

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…

Take away the money and watch the development go away ;)

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

#74
post #12

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.…

One of the first friends I made in college was a friend with CF. I didn't know what CF was. He was very mature for our age and generally a very nice, happy, caring person. Got internships, studied with us. Went to bars with us but never drank because he couldn't. He had stories about how Make-a-Wish foundation has been dragging their feet not to give him his wish since his childhood. He would take his enzymes, do the…

Never had a problem drinking. (So much so that I had to quit a few years ago)

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

#75

Earlier quoted context omitted.

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

Yeah. In all seriousness, you can buy the APIs directly from China/India and compound them yourself. It's easy and dirt cheap, in most cases. This is typically how underground steroid labs and other illicit pharmacies work. It's in some cases how legitimate compounding pharmacies work. So how do you know what you're getting is pure, or even real? Simple, before shipping it to the US, you send it over to an analytical…

This feels very Dallas Buyer's Club.

I assume communities exist on the Internet for this kind of "drug piracy"?

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

#76
post #17
post #6

Earlier quoted context omitted.

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…

> I would have imagined that most people with CF already had extreme anxiety - wondering when the infection that is going to end one's life will arrive. Is it really possible that Trikafta is causing noticeably worse anxiety? There's a discussion of this in the article. Essentially, a bunch of people have said that they started experiencing extreme anxiety when they started Trikafta, and that stopping or lowering the…

Clinicians are always a day late and a dollar short. The evidence comes from these people reporting. These clinicians need a 50 million dollar grant to get that proof.

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

#77
post #53
post #6

Earlier quoted context omitted.

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…

On the subject of correlation/causation, I once took a drug called Accutane to cure my teenage acne. Listed side effects included: "Mental health issues depression, psychosis, aggressive behaviour and suicide ideation and attempts" Accutane was the best medicine I ever took. It resolved my acne (permanently) in a matter of weeks. I felt elated afterwards and never experienced mental side effects. However, prior to th…

It takes a lot including many suicides to get that side effect listed. You are lucky it didn't reach that point for you. With a little more time or repeated usage it probably would have got you as well.

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

#78
post #25

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”).

The socialized medicine systems don't have infinite money just like private health systems don't; if they can't negotiate a cheaper price for the medicine they won't purchase it.

(It's not "health insurance". Insurance covers unpredictable outcomes; needing a medicine every month for the rest of your life is not unpredictable.)

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

#79
post #25

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”).

It’s not. That’s what a lot of people don’t understand.

These drugs from Vertex started being approved in 2014. US insurers pretty much covered them from approval. Even Medicaid (health insurance for low income) started paying for it.

Other countries? The UK just started in 2020.

In Canada? Last I checked only 5 of the 10 provinces paid for it and only if you’re under 18.

The US healthcare is expensive for a lot of reasons, and one of them is new technology gets paid for really quickly.

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

#80
post #12

Earlier quoted context omitted.

One of the first friends I made in college was a friend with CF. I didn't know what CF was. He was very mature for our age and generally a very nice, happy, caring person. Got internships, studied with us. Went to bars with us but never drank because he couldn't. He had stories about how Make-a-Wish foundation has been dragging their feet not to give him his wish since his childhood. He would take his enzymes, do the…

Never had a problem drinking. (So much so that I had to quit a few years ago)

It was more of an I don't want to risk it kind of thing. He did taste it a few times towards the last few years of college.
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