Proper treatment

Here is an article that was published in the SF Chronicle recently, about patients, and doctors fighting insurers over denied payment of treatment. This article makes me think about "evidence-based medicine" and makes me question who is using that evidence and who is making that evidence. doctors vs insurers. In this article, it seems like the evidence-base is being used to go against the individual physicians best-judgment. My question is whether this is a good thing or a bad thing for quality of care?

I agree that if a women is a diagnosed with breast cancer, she should receive the standard treatments, and if not, should be placed on a clinical trial so we can ethically and honestly monitor her health and safety and quantify her response. Doctors should not be using drugs that have not been vigorously tested in diseases that enable such testing.

The problem becomes more complex when you start dealing with diseases that are extremely rare in the population. Li Fraumeni syndrome for example. The number of people with this gene mutation is so little that there is not enough statistical power to ever conduct a clinical trial, to make "evidence" about effective treatments or therapies. In these more rare cases, I am concerned and would rather have care dictated by thought leaders and experts, rather then for-profit insurance companies.