My insurance keeps denying coverage for my rare disease treatment because there's not enough data on its effectiveness but there's not enough data because so few people have my condition.
More people experience this than they realize.
The circular reasoning that denies treatment due to lack of evidence while preventing the accumulation of evidence creates a systematic trap for those with uncommon conditions.
“Where Are You with Rare and orphan conditions?”
If this sounds familiar, the Library can help you find the bigger picture.