Once a death sentence, cardiac amyloidosis is finally treatable
1–10 of 39 posts
Re: Once a death sentence, cardiac amyloidosis is finally treatable
#2Re: Once a death sentence, cardiac amyloidosis is finally treatable
#3Robert 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...
Re: Once a death sentence, cardiac amyloidosis is finally treatable
#4The drug: https://en.wikipedia.org/wiki/Tafamidis
Re: Once a death sentence, cardiac amyloidosis is finally treatable
#5It'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...
Re: Once a death sentence, cardiac amyloidosis is finally treatable
#6It'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...
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.
Re: Once a death sentence, cardiac amyloidosis is finally treatable
#7Robert 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...
it's not clear if he had ATTR or AL amyloid
Re: Once a death sentence, cardiac amyloidosis is finally treatable
#8a) 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
Re: Once a death sentence, cardiac amyloidosis is finally treatable
#9a) 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.
Re: Once a death sentence, cardiac amyloidosis is finally treatable
#10[dead]