In that story, which is very long and has all kind of hollywood quality twists (and heros, and villains), there was a highly effective and (relatively, ~$10K ov

In that story, which is very long and has all kind of hollywood quality twists (and heros, and villains), there was a highly effective and (relatively, ~$10K overall) cheap treatment, where the official treatment was $30K/month with potential for stopping at some point, but most kids are on it for years before they can stop. The diagnostic failure was just the beginning. (And, unlike the HCQ/IVM case, which I don't support and is in general speculative - the guy responsible for the official recommendation was actually convicted for taking bribes from the company making the treatment. I won't divulge any details, because that will de-anonymize me - the disease is rare enough that people in the field know each other and all the cases). p.s: That treatment (in combination) is also used for other, similar diseases, each is rare, but overall it was a lucrative market for the drug company.