> ...we now have to assume the existence of some kind of insurance with copay, otherwise I don't know how 900 people afford $365k/year in medical costs You jus

> ...we now have to assume the existence of some kind of insurance with copay, otherwise I don't know how 900 people afford $365k/year in medical costs You just hit upon the problem. > Some families spend thousands of dollars each year to buy orphan drugs, which are drugs that have received a special designation from the U.S. Food and Drug Administration. About 1 in 8 families [with children taking orphan drugs] paid more than $2,000 a year in 2018 – double the percentage who spent that much in 2013.[0] Put that up against the US median household income of $67.5k (or $46.6k for black households)[1], and you've got yourself a significant expense. Keep in mind, this is only the median income. 8.7% of households make between $15-25k per year[1] and probably can't afford the copays, much less the insurance. If it's a scenario where it's "take the drug or a kid dies," more than 1/10th of those kids die, absent any outside financial help. And, that would be quite a lot of financial help, too. Let's not also forget this kid is probably uninsurable, so, they'll have to have group health insurance for the entirre rest of their lives. Better not get fired from your job when you're past 26, kiddo! --- [0]: https://labblog.uofmhealth.org/lab-notes/big-costs-for-small-patients-rare-diseases-study-finds https://labblog.uofmhealth.org/lab-notes/big-costs-for-small... [1]: https://www.census.gov/library/publications/2021/demo/p60-273.html https://www.census.gov/library/publications/2021/demo/p60-27...