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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

#101

Post by joney_baloney »

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 memory) asked me if I was interested in getting on Trikafta and after thinking it over for about 30 seconds I told them I'd probably pass. It seemed like it wouldn't have any beneficial effect on my lungs, as they no longer "have CF", and that I assumed it would just make extra weight for my decently healthy but still under par lungs to have to drag around. They didn't disagree.

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

#102

Post by ackbar03 »

rakejake wrote: post #90
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…

The book "The Billion Dollar Molecule" is about the founding of Vertex Pharma. Worth a read.

There's a follow up book as well, The Antidote. I read both to learn more about the industry

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

#103

Post by joney_baloney »

paulpauper wrote: post #45

If CF like breathing through a coffee straw, as some sources say? I tried it myself, and god I hope not. I lasted a few minutes and was gasping for air.

Once it gets bad, yeah. I was very end stage before my lung transplant and it's an accurate description.

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

#104

Post by TotalCrackpot »

fnordpiglet wrote: post #62
vkou wrote: post #26

Earlier quoted context omitted.

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.

I grew up with a lot of money insecurity, was homeless for a while and started my career with nothing - one change of clothes and a floor to sleep on. I’ve since done very well for myself and have a considerable amount of net worth at this point and a lucrative forward for as long as I want to keep working at it. I’ve lost most of my money anxiety, but it took a lot of purposeful work inside myself to achieve that in…

That's interesting - does your career require any formal education? Or were you able to develop some crucial skill on your own? Can you share what is your career about and where you started and where are you now? For example - do you hire employees or are you a landlord now, or are you an employee?

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

#105

Post by fnordpiglet »

TotalCrackpot wrote: post #104
fnordpiglet wrote: post #62

Earlier quoted context omitted.

I grew up with a lot of money insecurity, was homeless for a while and started my career with nothing - one change of clothes and a floor to sleep on. I’ve since done very well for myself and have a considerable amount of net worth at this point and a lucrative forward for as long as I want to keep working at it. I’ve lost most of my money anxiety, but it took a lot of purposeful work inside myself to achieve that in…

That's interesting - does your career require any formal education? Or were you able to develop some crucial skill on your own? Can you share what is your career about and where you started and where are you now? For example - do you hire employees or are you a landlord now, or are you an employee?

No, I’m a software engineer. I barely graduated high school because I was too busy smoking pot and programming at a time when you needed a degree to get a good job so didn’t have much opportunities despite being pretty skilled at programming. I got a job at Netscape tho as one of the first tech companies that didn’t look at credentials before skill. I did well there and did my own companies. But before I had nothing and move to California with $5 and a change of clothes, slept on the floor of someone I randomly met on irc (I was lucky it didn’t turn out worse than it did don’t try this at home!) until I found a job. Anyway, after Netscape and my startups I became a quant on Wall Street, finished my cs degree, and have had a successful career since. Now I’m the top IC at a late stage startup.

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

#106

Post by ETH_start »

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 murder, fatal accidents, rare diseases like cystic fibrosis and the universal disease of aging.

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

#108

Post by School-Cotton »

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”).

No country pays unlimited amounts of public money for brand new drugs.

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

#109

Post by TotalCrackpot »

fnordpiglet wrote: post #105
TotalCrackpot wrote: post #104

Earlier quoted context omitted.

That's interesting - does your career require any formal education? Or were you able to develop some crucial skill on your own? Can you share what is your career about and where you started and where are you now? For example - do you hire employees or are you a landlord now, or are you an employee?

No, I’m a software engineer. I barely graduated high school because I was too busy smoking pot and programming at a time when you needed a degree to get a good job so didn’t have much opportunities despite being pretty skilled at programming. I got a job at Netscape tho as one of the first tech companies that didn’t look at credentials before skill. I did well there and did my own companies. But before I had nothing…

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 you were young?

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

#110

Post by dan-robertson »

TotalCrackpot wrote: post #109
fnordpiglet wrote: post #105

Earlier quoted context omitted.

No, I’m a software engineer. I barely graduated high school because I was too busy smoking pot and programming at a time when you needed a degree to get a good job so didn’t have much opportunities despite being pretty skilled at programming. I got a job at Netscape tho as one of the first tech companies that didn’t look at credentials before skill. I did well there and did my own companies. But before I had nothing…

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…

Some shops care more than others. Going to a target school also matters a lot more for interns/new grads than for more experienced hires.
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