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Fighting the Fragmented System

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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. The denial letter stated in the first paragraph that the head of the review was a doctor board certified — in pediatric medicine! (OK — I may seem young, but that seems a bit of a stretch).

The letter also said there was no proof that Faslodex works on “endometrial cancer.” That is not the cancer I have. THEY DID NOT EVEN GET MY CANCER CORRECT in this evaluation!

So I appealed to the state insurance commissioner. And I won! The California State Insurance Commissioner overruled Blue Cross and now I can get the drug.

I’ll start getting it immediately and hopefully Faslodex will be effective in reducing the size of the current tumor and the surgery in November can be cancelled!

My concerns also go beyond the denial of this treatment. The fragmented system must be fixed. Instead of being able to focus on my health, which already is an incredible distraction from my business, I had to try to walk through this extremely complicated system.

It’s been hard for me to sort out what doctors have said, what insurance companies have or have not responded to, and when you consider they send us to an outside pharmacy group, it just adds another layer. It's important to make sure YOU get everything in writing (keep a file!)

Should it take this much work to follow up on a claim? Should it always take having the help of someone like Archelle?

Thank goodness for EmpowHer.com (and Michelle and Archelle of course) to encourage me to continue advocating and not to give up.

Edited by Jody Smith

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We value and respect our HERWriters' experiences, but everyone is different. Many of our writers are speaking from personal experience, and what's worked for them may not work for you. Their articles are not a substitute for medical advice, although we hope you can gain knowledge from their insight.