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Once a death sentence, cardiac amyloidosis is finally treatable

nytimes.com

21–30 of 39 posts

Re: Once a death sentence, cardiac amyloidosis is finally treatable

#21

Earlier quoted context omitted.

What's with the kneejerk takedown? a) Yes, it's more common in older people. A lot of old people end up in hospital b) 30% fewer deaths and hospital admissions is a good thing in my book c) The more common form according to my wife

“Fewer deaths” is a meaningless concept. Every human being inevitably dies. If you prevent someone from dying today, you have only delayed the inevitable. In some cases this is extremely valuable; if you save a newborn baby, that baby could live eighty more years. If you save a 77 year old, they will not live eighty more years. And if you repeatedly save elderly people from natural conditions that could easily kill t…

While this is logical, the more diseases of old age we cure the longer and better the quality of life the elderly get, and treating amyloidosis is one small step towards that.

Re: Once a death sentence, cardiac amyloidosis is finally treatable

#22

It's incredibly good to see Medicare covers these drugs, considering how expensive they are. Meanwhile, my diabetic friend can't get their insulin covered by Medicaid...

Presumably your friend wants a particular brand of insulin, not the insulins that Medicaid covers because they are the most cost effective?

Medicaid negotiates with manufacturers to get the best price. When they are successful in securing a low price, they preferentially cover them.

Usually if the doctor can show why those brands aren’t good enough, Medicaid will cover alternatives that aren’t covered, but it can be a lot of work for the doctor.

Re: Once a death sentence, cardiac amyloidosis is finally treatable

#23
post #9

a) average age is 77 b) drugs cost a shitload (hundereds of thousands/yr) to extend lifespan by...months c) only for ATTR (not AL) amyloidosis d) the drive to diagnose and treat only really started after tafamidis (1st drug with any effectiveness) was marketed...hmmm e) the dude in the article used as an example was probably helped more by treating his afib than by the fancy drugs for sure there are some genetically…

if you can't afford Tafamidis, you could probably get away with taking - Flufenamic acid - Valtoren (Diclofenac) - Diflunisal off-label. https://www.benthamdirect.com/content/journals/cdtcnsnd/10.2... IANAD but I believe that Valtoren has the least side effects, but in general since they're all NSAIDs they have been tested for long-term analgesic use, so they're relatively safe and quite inexpensive.

NSAIDs absolutely aren’t for long term use.

Re: Once a death sentence, cardiac amyloidosis is finally treatable

#25
post #19

>They are incredibly expensive, costing $250,000 to $500,000 per year. No way they cost that much to make. Big pharma is out of control.

You should've seen how unaffordable cars were 100 years ago.

The Ford Model T sold for $260 in 1925, which is $4,056 in 2021 dollars.

Prices were higher in 1922, and the Model T was basic and mass produced leading to a falling price.

Across the board, in 1922: https://www.1920-30.com/automobiles/1922-car-prices.html

Re: Once a death sentence, cardiac amyloidosis is finally treatable

#27
post #25

Earlier quoted context omitted.

You should've seen how unaffordable cars were 100 years ago.

The Ford Model T sold for $260 in 1925, which is $4,056 in 2021 dollars. Prices were higher in 1922, and the Model T was basic and mass produced leading to a falling price. Across the board, in 1922: https://www.1920-30.com/automobiles/1922-car-prices.html

> The Ford Model T sold for $260 in 1925, which is $4,056 in 2021 dollars.

I'm not sure I buy this conversion. It was targeting the middle classes (and on credit), and middle classes in 2025 could buy that cash. Working classes in 2025 could probably buy that cash, and definitely on credit.

Re: Once a death sentence, cardiac amyloidosis is finally treatable

#28
post #25

Earlier quoted context omitted.

The Ford Model T sold for $260 in 1925, which is $4,056 in 2021 dollars. Prices were higher in 1922, and the Model T was basic and mass produced leading to a falling price. Across the board, in 1922: https://www.1920-30.com/automobiles/1922-car-prices.html

> The Ford Model T sold for $260 in 1925, which is $4,056 in 2021 dollars. I'm not sure I buy this conversion. It was targeting the middle classes (and on credit), and middle classes in 2025 could buy that cash. Working classes in 2025 could probably buy that cash, and definitely on credit.

The conversion isn't a hill I'd die on, it was sourced from a reddit economics thread as a bold assertion of fact:

https://old.reddit.com/r/AskEconomics/comments/q20fr4/the_fo...

The 1922 price list looks solid though, it's from a dedicated 1920s 'fan' site, but, again, I haven't personally verified or cross checked the numbers - it just seemed like an interesting bit of info to chase :)

Re: Once a death sentence, cardiac amyloidosis is finally treatable

#29
post #19

>They are incredibly expensive, costing $250,000 to $500,000 per year. No way they cost that much to make. Big pharma is out of control.

Why don't you make some and sell it for a mere 200k?

Because patents, despite publicly funded research.

Every damn time.

Re: Once a death sentence, cardiac amyloidosis is finally treatable

#30
post #3

Robert Jordan, author of the "Wheel of Time" fantasy series, died of this disease in 2007. https://en.wikipedia.org/wiki/Robert_Jordan#Illness_and_deat...

That was my first thought, too. I guess the condition's name is pretty memorable. It's been almost twenty years, so it shouldn't surprise me that new research means that people who died in the past maybe could have survived longer if we had known better. And, of course, Jordan was going to die some day. But I certainly wish he'd had more time.

Another example of this is the famous mathematician David Hilbert. He came down with pernicious anemia in 1925 and suffered permanent damage, so much so that in the words of Eugene Wigner, "was hardly a scientist after 1925, and certainly not a Hilbert".

Today, PA is easily treated with vitamin B12 injections.

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