5 ms·
Once a death sentence, cardiac amyloidosis is finally treatable
- sleepyguy 1y agohttp://archive.today/uTakY http://archive.today/uTakY
- pfdietz 1y agoRobert Jordan, author of the "Wheel of Time" fantasy series, died of this disease in 2007. https://en.wikipedia.org/wiki/Robert_Jordan#Illness_and_death https://en.wikipedia.org/wiki/Robert_Jordan#Illness_and_deat...
- dogmatism 1y agoit's not clear if he had ATTR or AL amyloid
- maxlybbert 1y agoThat 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.
- pfdietz 1y agoAnother 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.
- cma 1y agoThe drug: https://en.wikipedia.org/wiki/Tafamidis https://en.wikipedia.org/wiki/Tafamidis
- LoganDark 1y agoIt'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 1y agoIt'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 1y agoPresumably 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.
- LoganDark 1y ago> Presumably your friend wants a particular brand of insulin, not the insulins that Medicaid covers because they are the most cost effective? I don't think they're picky about brand, I seem to recall that they didn't know about the cheap insulin at Fred Meyer when their Medicaid stopped covering what they were getting before. I think that insulin does work for them.
- dogmatism 1y agoa) 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
- dnautics 1y agoif 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/10.2174/156800705774322076 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.
- quantumwoke 1y agoWhat'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
- stefantalpalaru 1y ago[dead]
- snvzz 1y ago>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 1y agoThe first dose costs billions to make, every dose after that might only cost a few cents. It all averages out.
- abeppu 1y agoFrom a study looking at cost-effectiveness of tafamidis: > Orphan drugs enjoy substantial pricing power because there are few or no therapeutic competitors. As a result, discounts off the list price, if any, tend to be small. In a recent study of 50 patients receiving tafamidis, the mean (SD) cost of a 30-day supply was $23,485 ($2); the resulting annual cost of $281,820 is greater than the $225,000 list price we assumed. In fact, U.S. prices for specialty pharmaceuticals typically experience substantial year-on-year price increases during the period of market exclusivity. I mean, we shouldn't be surprised what happens to prices when the law goes out of its way to create a monopoly. https://pmc.ncbi.nlm.nih.gov/articles/PMC8170666/ https://pmc.ncbi.nlm.nih.gov/articles/PMC8170666/
- robertlagrant 1y agoYou should've seen how unaffordable cars were 100 years ago.
- defrost 1y agoThe 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 https://www.1920-30.com/automobiles/1922-car-prices.html
- robertlagrant 1y ago