Once a death sentence, cardiac amyloidosis is finally treatable

[sleepyguy]

http://archive.today/uTakY

[pfdietz]

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...

[maxlybbert]

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.

[dogmatism]

it's not clear if he had ATTR or AL amyloid

[LoganDark]

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...

[pfdietz]

It's expensive because it's categorized as an "orphan drug". I have to wonder if the underestimation of the prevalence of CA was part of that.

[refurb]

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.

[dogmatism]

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 transmitted younger patient for whom this is important. But there are a lot of frail older people who are getting diagnosed with wild-type ATTR amyloid for...questionable benefit at massive cost. IMO, the jury is still out

[quantumwoke]

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

[dnautics]

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.

[cma]

The drug: https://en.wikipedia.org/wiki/Tafamidis

[snvzz]

>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.

[zozbot234]

The first dose costs billions to make, every dose after that might only cost a few cents. It all averages out.

[robertlagrant]

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

[Am4TIfIsER0ppos]

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