Cystic fibrosis breakthrough has given patients a chance to live longer • Hacker News Board

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

#121

Post by fnordpiglet » Sun, Mar 10, 2024, 3:45 PM UTC

currymj wrote: post #116

TotalCrackpot wrote: post #109

Earlier quoted context omitted.

I don't really see how you become a quant on Wall Street before you finish the CS degree, they I think look at credentials a lot, can you at least give the name of the prop shop that hired you without a formal education? Did you have any good results in algorithmic competitions or math competitions in high school? And how did you learn programming without an actual computer? Did your parents buy you a computer when y…

early 2000s was a different time also. nerd career paths hadn’t yet become prestigious and formalized. there were no middle schoolers optimizing their resumes for how to get a Jane Street internship in 8 years bc Jane Street was only a few years old. same for a lot of other firms.

It really started around 1994 with Netscape and then the dotcom cultural mindset that valued ability over credentials.

Also at that time, as you say, there wasn’t a broad cultural awareness of the money to be made in quantitative fields. In fact this was the era of Revenge Of the Nerds movies and glorification of the idiot jock getting a business degree and the passionate nerd being the butt of the joke. You really only went my route if you were a total fuck up loser. Now the social view of things has completely pivoted.

I would say interestingly the middle school kids optimizing their resume only make it so far in industry. They’re never really passionate about what they’re doing they’re just laddering. At some point they shift to management or product or something. At the top firms though the people who really make the money and whose opinion has ultimate power are the fuck up losers who live and breathe their passion and would do it for free if that’s all there was.

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

#122

Post by joney_baloney » Sun, Mar 10, 2024, 3:50 PM UTC

Sammi wrote: post #118

joney_baloney wrote: post #101

Earlier quoted context omitted.

My younger brother has CF and takes Trikafta and it's absolutely made all the difference in the world, it's wonderful to see. Watching all the years of research and CFF funding finally pay off is really something. My personal situation is probably pretty unique, in that I have CF as well, but had a double lung tx many years ago. A couple years ago my transplant team (actually it may have been the CF people.. fuzzy me…

Yes but CF affects all liquids in your whole body. You can get diffuse long term damage anywhere and everywhere in your body. Having to eat calorie amounts like someone without CF sounds like a good tradeoff in order to not risk this damage.

Yeah and it'd help my sinuses too but at my age I'm used to taking the enzymes when I eat and they work well enough. Long term damage is basically my personality at this point, lol.

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

#123

Post by abdulhaq » Sun, Mar 10, 2024, 4:45 PM UTC

joney_baloney wrote: post #101

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.…

My younger brother has CF and takes Trikafta and it's absolutely made all the difference in the world, it's wonderful to see. Watching all the years of research and CFF funding finally pay off is really something. My personal situation is probably pretty unique, in that I have CF as well, but had a double lung tx many years ago. A couple years ago my transplant team (actually it may have been the CF people.. fuzzy me…

I'm in a similar situation so it's funny to see someone else here with the same. I had my transplant in 1988. There's also Steve Rasmussen (you can google him) who AFAIK also does not take Trikafta.

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

#124

Post by matthewtse » Sun, Mar 10, 2024, 5:21 PM UTC

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…

(I left a previous comment as a similar sufferer of a lifelong genetic disease that was cured by a breakthrough medicine: https://news.ycombinator.com/item?id=37541222)

Funnily enough, although in practical terms my life is infinitely better than it was before the drug in, I would rate my anxiety as higher than it was before.

A lot more options open in the world, a lot more to hope/pine for, a lot more to lose. Back in the days when my expected future was to just hang out in bed, there wasn't much else to do than to just chill and read a book.

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

#125

Post by gcanyon » Sun, Mar 10, 2024, 5:22 PM UTC

krooj wrote: post #88

gcanyon wrote: post #38

Earlier quoted context omitted.

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.

I also have the same mutation, as does my wife. From what I've been told by various hematologists, vascular surgeons, and interventional radiologists, it's a very weak clotting disorder, but you do have to keep an eye on certain environmental factors: smoking, hydration, movement, and trauma/surgery. To put it another way, FVL is fairly benign until you're already way into Virchow's danger done, and at that point it'…

Possibly true, but don't sleep on it -- I happened to be transitioning insurance when it happened, so I dragged it out for several days before ending up at the ER. They sent me home later that day, but with strict warnings about calling 911 immediately for any sign of stroke, heart attack or pulmonary embolism. Fortunately all I have to show for it is weakened vein flow in the affected leg.

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

#126

Post by matthewtse » Sun, Mar 10, 2024, 5:39 PM UTC

cbeach wrote: post #66

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…

I've seen conversations like this before, regarding the heavy cost that Big Pharma levies on treatments for major diseases. And US companies frequently come up in these discussions. But the alternative, without the massive cashflows, is a world where the research never happens, and the diseases haunt us forever. The Big Pharma treatments will eventually become public domain, and may inspire other cheaper treatments p…

I love this reply.

It's a particularly touchy subject because it involves people's health and the ability/inability to pay for it.

But as a sufferer of a debilitating disease with a miracle drug that costs an arm and a leg, I've become a convert to the US pharma-industrial complex. These drugs take billions of dollars and decades to research--that funding/development isn't going to happen without venture capitalists who shoulder that risk for the profit reward. An equal number of pharma venture capitalists lose all their money, researching dead-end drugs.

I'm incredibly blessed to have both a cure invented during my lifetime and the means to pay for it. But even if I lacked the means, I would still infinitely prefer a world where a cure exists that I need to somehow access, as opposed to a hopeless world with no cure.

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

#127

Post by bdcravens » Sun, Mar 10, 2024, 7:24 PM UTC

cogman10 wrote: post #84

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.…

> The only real downside: weight gain. Interesting. I'm an uncle to a family member with CF (and I'm a carrier) and one of their long battles has actually been weight. To the point of doing things like downing olive oil to try and keep up the weight. They've eventually had to take the fairly drastic measure of getting a feeding tube installed. Getting enough calories in just hasn't been possible until the feeding tub…

Yeah, it's been quite a shock trying to reverse the first 40+ years of my life where I was told to eat eat eat. Not just for the weight, which is really a vanity thing, but also to counteract the diabetes that most with CF develop, since that can directly impact overall health and the ability to fight off infection.

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

#128

Post by mmustapic » Sun, Mar 10, 2024, 8:48 PM UTC

ETH_start wrote: post #106

If I can be allowed a bit of sophistry: It's a beautiful thing for treatments to be devised for rare conditions, to give people decades more life. It would be more wonderful still if we devised treatments for aging, the universal condition, to grant everyone decades more life. Hardly anyone deserves to die. The vast majority of people are singularly incredible and worthy of life. They deserve to be equally safe from…

Many incurable diseases come with an awful quality of life, like CF. Even cancer, treated or not, is a terrible experience. Just aging, what you call “a disease”, is nothing like that.

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

#129

Post by Sammi » Sun, Mar 10, 2024, 9:36 PM UTC

Aloha wrote: post #48

ForHackernews wrote: post #27

Earlier quoted context omitted.

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.

Of course. All medicine producers know to price their product just below the alternative.

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

#130

Post by elliotto » Sun, Mar 10, 2024, 10:17 PM UTC

matthewtse wrote: post #126

cbeach wrote: post #66

Earlier quoted context omitted.

I've seen conversations like this before, regarding the heavy cost that Big Pharma levies on treatments for major diseases. And US companies frequently come up in these discussions. But the alternative, without the massive cashflows, is a world where the research never happens, and the diseases haunt us forever. The Big Pharma treatments will eventually become public domain, and may inspire other cheaper treatments p…

I love this reply. It's a particularly touchy subject because it involves people's health and the ability/inability to pay for it. But as a sufferer of a debilitating disease with a miracle drug that costs an arm and a leg, I've become a convert to the US pharma-industrial complex. These drugs take billions of dollars and decades to research--that funding/development isn't going to happen without venture capitalists…

It feels like there's a lack of imagination here. Could you conceive of a world that was successful in its research of drugs, but was propped up by an economic model other than pharma venture capitalism?