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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

#31

Post by krooj »

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…

I'll echo this - I have had two left leg DVTs, spaced about 7 years apart, and after the second event, really started diving into medical publications - surgical journals, medical textbooks, clinical trials - as a means to better understand the condition, it's pathology, etc. I ultimately submitted to testing and discovered a congenital stenosis of the left iliac vein with heavy retroperitoneal collateralization that necessitated a stent to keep that iliac vein open.

I also had a quick look into the social media (primarily reddit) aspect of these vascular conditions, and it's a pile of dogshit. Most of these patient communities bill themselves as "support groups", but there's never any real discussion on meaningful research, drug, or device advancements. They places serve primarily as "pity pits" for chronic moaners and scammers selling alternative medicine.

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

#32

Post by jhoechtl »

bane wrote: post #7

Oh wow. I remember a kid in elementary school with CF. I didn't understand at the time what he and his family was going through. I remember his personality and intelligence, his skill on the soccer team. He was unusually driven for an 8-9 year old. As I got older and into my 20s, I thought about him a lot -- it was understood that most CF patients don't make it out of their early 20s and I knew even if he were partic…

Those were wonderful words and moved me a lot.

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

#33

Post by kouru225 »

When I was a kid, I was told my cousins would die before they turned 30 because of CF. One of them ended up dying when he was 10, but other is now above 30 and seems incredibly healthy.

The amount of development in the treatment of CF over the last 20 or so years is so incredible it’s insane.

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

#34

Post by nwiswell »

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...

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

#36

Post by tnias23 »

ForHackernews wrote: post #28
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...

There’s a sign-up process required.

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

#37

Post by pfannkuchen »

vkou wrote: post #26
COGlory wrote: 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…

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.

You might even have more with 15M! It’s much harder to replace if you lose it.

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

#38

Post by gcanyon »

krooj wrote: post #31
Aurornis wrote: post #14

Earlier quoted context omitted.

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…

I'll echo this - I have had two left leg DVTs, spaced about 7 years apart, and after the second event, really started diving into medical publications - surgical journals, medical textbooks, clinical trials - as a means to better understand the condition, it's pathology, etc. I ultimately submitted to testing and discovered a congenital stenosis of the left iliac vein with heavy retroperitoneal collateralization that…

This is interesting -- I have Factor V Leiden (heterozygous) and have had one DVT. It never would have occurred to me to seek out a support group.

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

#39

Post by ForHackernews »

tnias23 wrote: post #36
ForHackernews wrote: post #28

Earlier quoted context omitted.

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...

There’s a sign-up process required.

Ah! Fair enough. I assumed HN links bypassed the paywall.

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

#40

Post by ploika »

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”).

Not necessarily. I don't know about other countries, but I remember there being a campaign here in Ireland (with one of the highest rates of cystic fibrosis in the world) to get Orkambi covered under the Drug Payment Scheme when it was new.
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