2 ms·

I think you need to be careful to distinguish between two different kinds of failures of the medical system here. In your anecdote, you suffered a failure to d

I think you need to be careful to distinguish between two different kinds of failures of the medical system here. In your anecdote, you suffered a failure to diagnose, and specifically, a failure to diagnose a rare disease. This is unfortunate, and bad, and a problem to try to figure out, but it is a completely different sort of failure than what other people are proposing for HCQ or IVM, that there is a highly effective and inexpensive treatment that the medical establishment is failing to recognize despite apparently having such clear evidence in its favor that people on Facebook can understand it.

beagle3 5y ago
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.