With rare diseases this is always the case. Here in NW Europe we have the same issue with some one in a million diseases. The main issue is the insane prices charged by the companies to recouperate in a few years time to appease shareholders instead of several decades, which results in the cold truth it is not worth the effort looking at the grand scheme of things.

That’s the thing. The US system is expensive not only due to inefficiency but also due to a willingness to pay for things other countries don’t.

If you happen to have a kid with a rare disease, that matters.

> Medicaid is actually very good coverage.

As the saying goes, "it's the best insurance money can't buy".