JoshuaSlocum on Nostr: The boutique disease I had in mind in particular is cystic fibrosis. It is a uniquely ...
The boutique disease I had in mind in particular is cystic fibrosis. It is a uniquely (more or less) northern European genetic disease, and is usually classified as the most common life-threatening genetic disease.
That said, all of the CF patients worldwide wouldn't fill the University of Texas football stadium. The newly available CFTR modulators have a sticker price of somewhere around $300K/year, and they were developed with the help of some of the same Wall Street shenanigans we were talking about earlier.
The problem with charity in healthcare is that healthcare varies wildly. Getting a free wellness check is way different than a prosthetic limb which is way different than an organ transplant. Charity certainly can fill in cracks here and there, but it scales poorly. A lot of healthcare requires massive vertical integration and the physical plant to keep it operating. GamGam's sewing circle volunteering part-time is not gonna cut it.
That said, all of the CF patients worldwide wouldn't fill the University of Texas football stadium. The newly available CFTR modulators have a sticker price of somewhere around $300K/year, and they were developed with the help of some of the same Wall Street shenanigans we were talking about earlier.
The problem with charity in healthcare is that healthcare varies wildly. Getting a free wellness check is way different than a prosthetic limb which is way different than an organ transplant. Charity certainly can fill in cracks here and there, but it scales poorly. A lot of healthcare requires massive vertical integration and the physical plant to keep it operating. GamGam's sewing circle volunteering part-time is not gonna cut it.