Aetna Insurance denies treatment to breast cancer patient

[Ms. Toad]

30. My daughter has been denied critical screening tools because they were considered experimental.

It is less of an issue with breast cancer (and conditions which are common). But virtually everything is experimental for my daughter (about 30,000 individuals in the US have her condition). With a patient cohort so small, it is both financially prohibitive (return on investment) to run clinical studies. Even if the studies can be run from a financial perspective, there are too few patients to populate the studies.

It's a real issue - and while it shouldn't happen to anyone, when it happens to such popular diseases like breast cancer - it ultimately brings attention to the problem which disproportionately impacts those of us with rare diseases.