Has anyone had experience with higher appeals for the use of cancer drugs off label?

The problem is that off label drug use is only approved by Medicare when it's listed in a compendia or in medical journals. Unfortunately, my loved one has an extremely rare cancer (one of the first handful of reported cases), so there is no accepted treatment listed ANYWHERE.

Since the cancer responds to estrogen, they've been trying various anti-estrogen meds -- which have definitely slowed but not completely stopped the progression of the cancer. Now the oncologist wants to try Ibrance but Medicare says no, because there is no established standard for Ibrance with this cancer. Again, this type of cancer has no established standard at all. It wasn't even thought to exist till five years ago.

Has anyone ever hired a lawyer to appeal at a higher level?