For those with rare diseases, insurance also doesn't help with "N of 1" efforts. A case report to consolidate critical details would be invaluable. Yet there's no administrative path to fund this personally let alone with insurance help. Without summary case report it's harder to see the big picture, get a care team on the same page, and dial in on the underlying disease mechanism.
Pharma is also not enthusiastic about "off label" use of their medications. They are happy to lower costs when insurance denies coverage for an indicated diagnosis, to demonstrate benefit so it then becomes covered. However, "off label" use is often full cash fare, making it impossible for common folk to perform low-risk physician-guided experiments when standard therapies are ineffective.
We can and should do so much better.