I have had endometrial stromal sarcoma (ESS) eight times now — my eighth surgery will be in November.
Radiation and chemotherapy really don't attack this sarcoma so hormone therapy is often prescribed to try to stop the reccurrences. I have tried all of them that are available in the U.S. — except for Faslodex, which is an injection once a month and is about $1,700 per injection.
My insurance, Anthem Blue Cross, denied it when my gynecological oncologist from Stanford University requested it the first time, following my surgery in April 2010. Blue Cross said Faslodex is experimental. As my doc says — then all the drugs should have been denied. ESS is so rare that there are no specific studies on it — not a large enough group of us to do a study on — so all the drugs have really been experimental — based on results on similar estrogen-receptive breast cancers.
Since that first denial, my sarcoma returned twice — and at a faster and faster rate. The next time was in October 2010 (and my surgery was in January 2011) and then in April 2011 (my surgery is scheduled for November 29 to remove the tumor). It is major pelvic surgery to get the tumors out.
Michelle Robson, founder and CEO of EmpowHer.com, (and a friend) was outraged. She referred me to EmpowHer’s advisory board member Archelle Georgiou, MD, former Chief Medical Officer for United Healthcare. She knows how to navigate these systems and helped me.
But Stanford had no paper trail of their first request and denial — at least some of it was done verbally. So in April of this year, Archelle told me to have Stanford send a letter outlining the research on which they were basing the request for Faslodex. Again, Anthem called the doctor and said they would not approve this. I waited for the official letter. It did not come.
I called Anthem in June. They said "we told the doctor on the phone." When I told them legally they must send a letter (within two weeks), they said they would. I never got it. I filed an appeal. (Again, Archelle coached me each step of the way).
I found out last month that the appeal was denied.