My guess is they live in the US and they're making their argument under the assumption that the treatment will be enormously expensive and you will have to pay out of pocket for it. In that case you're caught between a rock and a hard place: will I die a slow and painful death due to genetical disease X, or do I go bankrupt paying for it.
In many countries this is a genuine concern I guess. Even in multiple European countries with great healthcare and (nearly) free health insurance, "novel" (and often very expensive) treatments are not always covered.
> Really shows how ill the "App Store" model is when a company like Nintendo who has an entire hardware empire off selling high quality non-exploitative games can't make money on it without resorting to gambling industry tactics like the other low quality apps/games on there.
Or they're just greedy. They make tons of money running their own walled gardens.
Emby, a (somewhat) open source C# project, is not a fork of Plex Media Server, a closed source C/C++ project. Emby was forked as Jellyfin however, as a reaction to Emby becoming more and more of a closed source project.
Using both Windows and macOS I feel that Windows has only recently started to catch up with Finder.