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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

#61

Post by bdcravens »

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…

Vertex is very good about providing programs to put it in the hands of those who need it. I have great insurance and a great income, and they even apply deductible assistance to me.

In the online CF communities I'm a part of, I've never heard of anyone who couldn't get access to the medication (aside from the country they're in not approving it) (I'm in the US so my perspective is probably skewed)

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

#62

Post by fnordpiglet »

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.

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 including years of daily meditation and intentional study of Buddhism. Before that my money anxiety was unbearable. It didn’t matter how little or how much I had, because it wasn’t about money in truth. It was a fear of losing control and other things like self worth and identity issues as a result of my earlier life. As I learned to let go of the self and my identity and live life as it is rather than what I’m afraid it might be I’ve lost my fears, not just about money but all of them. In my experience lack of money instigated my anxieties but once they started it didn’t matter how little or much I had.

That said it drove me to get more and more, and I enjoy having more than when I had none. But even if I lost it all I would be ok now.

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

#63

Post by bdcravens »

paulpauper wrote: post #60
xenospn wrote: post #25

Earlier quoted context omitted.

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”).

'other countries' would not even developed the drug...Vertex, a US pharma company, developed Trikafta. No one is paying the 300k out of pocket. The high price incentivizes research. Expensive drugs seems like a tradeoff for more innovation.

I literally just received a box of Trikafta on Wednesday. My copay was $150 on a $31,855 retail price. (I actually don't pay the $150, due to Vertex's copay assistance)

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

#64

Post by bdcravens »

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…

Yes, the CFF has partnered with companies like Vertex to take an almost VC-like approach towards developing new drugs (Trikafta being one of many similar drugs they've developed with Vertex)

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

#65

Post by bdcravens »

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.

Yes, I (CF patient) just had a one-week hospital stay, and right now the (retail) price of that vacation is around $100k the last time I looked at all of the bills. (fortunately I have amazing insurance)

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

#66

Post by cbeach »

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 prior to that.

The fact that these conversations come up frequently is a symptom of the fact that Big Pharma is frequently doing fantastic things. Curing diseases that have plagued humanity for millenia and killed millions.

We have a very bright future. But the future is not free of charge, as we'll continue to require a lot of medical research, and medical researchers have families to feed, like the rest of us. Medicine costs money - there's no escaping it.

In the UK, we sometimes mistakenly imagine that our socialised healthcare system is "free." It's not. It's one of the most expensive in the world, and employs over 2 million people. The component of tax that I paid to fund the National Health Service was £8919 last year - the largest single expenditure of my taxes, and vastly more than I'd need to spend to get private healthcare.

So while American medical pricing is scary and sometimes ruthless, I think we need to put things in perspective and recognise their leadership in medical research - without which, we'd all be in a worse situation.

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

#67

Post by jMyles »

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.…

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.

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

#68

Post by bdcravens »

gfodor wrote: post #11
forgetfreeman wrote: post #3

I had a coworker with CF that started this treatment. Over the course of their first year of treatment, as it became plain to them just how effective it was and what the implications for their long-term survival might be, their behavior changed drastically. Within 18 months of starting treatment they were showing worrying indications of both budding mental health issues and heavy substance abuse. Their marriage, whic…

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.

I also have CF, and my diagnosis was different than most: I grew up dirt poor and wasn't diagnosed until I was almost 14. Even after diagnosis, it pretty much became incumbent on me to manage my care. I feel that not being put in a bubble and not being told I was going to die kept CF from shaping my perspective (today I'm 47 and have all the boring problems people my age have. My health is tolerable, sitting at about 50-60% lung capacity)

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

#69

Post by bdcravens »

forgetfreeman wrote: post #3

I had a coworker with CF that started this treatment. Over the course of their first year of treatment, as it became plain to them just how effective it was and what the implications for their long-term survival might be, their behavior changed drastically. Within 18 months of starting treatment they were showing worrying indications of both budding mental health issues and heavy substance abuse. Their marriage, whic…

Many have reported severe anxiety due to Trikafta. As I mentioned in another comment, I believe I experienced the same, but I also started Lexapro around the same time for other non-CF reasons, so independent test variables and all that.

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

#70

Post by bdcravens »

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.

I have CF. My lung capacity is around 55% (many have lower, and around 20-30% is when they tend to start talking lung transplant)

I wouldn't use that analogy. It's more like breathing in a deep swimming pool or a very humid sauna. Slight physical exertion (like stairs or hills) can be like most people doing strenuous exercise. Laziness tends to be a way of life :-)

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