Debra's Choice – Focused Ultrasound

Symptoms

I’ve had fibroids for the past 10 years that were closely monitored. About three years ago, I realized that my prolonged, heavy, crampy periods were taking over my life. I found it difficult to make social or vacation plans because I knew if I had my period, I wouldn’t want to leave my home (and proximity to a bathroom). I tried oral contraceptives to control the symptoms of my fibroids. Although I did not experience any symptom relief, I continued to take the oral contraceptives.

Six months later, I was hospitalized for two weeks with life-threatening blood clots in my leg and lungs, in addition to severe anemia from my prolonged periods. I had to take a blood thinning medication for the next two years, which make my periods even worse. I missed work frequently during those two years and I missed out on a lot of life, too. I could barely function as I continued to suffer with my all-consuming fibroids.

Treatment

I finally got the green light to stop taking blood thinners and sought a permanent solution to my fibroid problems. My general gynecologist referred me to a fertility gynecologist effects of who performs hysteroscopic (vaginal) myomectomies. After a healthy debate about the side effects of Lupron between nearly all of my doctors, I got medical clearance to begin monthly Lupron shots to shrink my largest fibroids prior to surgical intervention. Since my history of blood clots was such a significant risk factor for surgery, I discussed other treatment options with my fertility gynecologist. She referred me to a gynecologist who performs the Focused Ultrasound procedure.

Dealing with the Insurance Company

After that consult, I realized that it was going to be an uphill battle to get the procedure covered by my insurance plan. I started by asking for a pre-determination of benefits. I was denied coverage. I appealed the denial of benefits. I got a denial of the appeal. I then sought an external appeal, as was my right under my health plan. This is when the real work started. I built my own case for coverage and got whatever documentation I needed to support it. I facilitated the exchange of information between my doctors when necessary. I submitted a thorough packet of information to the external appeal agent (which had three gynecologist-reviewers write independent rulings) and hoped for the best. And I WON-two out of three of the reviewers overturned my insurance company’s denial of benefits! The judgment is legally binding and my insurance company will pay $7,500 for the procedure.

Debra’s Advice

As I think about what I can offer as advice to other women going through the same process, I came up with the following:

1) Understand your health insurance coverage. Know what the steps are for appeal(s) of denials of coverage. Make several phone calls and speak to people in different departments at your insurance plan. Confirm what you have been told by others.

2) Plan a few steps ahead for your course of action. While my insurance company made their decision, I went ahead on the assumption of denial of coverage and make calls to the external appeal agent to get information on their process. I got the paperwork ahead of time and started to gather the information needed to build a case for myself based around the questions asked on their paperwork.

3) Keep your paper work organized and maintain copies of everything. Request a copy of your test results from your physicians. Organize the transfer of information between physicians yourself. Fill out release of medical information forms as needed. Follow the paper trail and make sure information is disseminated correctly. Follow-up with phone calls.

4) Think about how to build your own case for coverage. Why is having the ExAblate a better option for you? What are the unique factors in your medical history that you need to highlight? Or perhaps your fibroid is in a position that makes surgery difficult. Have consults from different types of physicians to confirm these unique medical factors. During one of my consults with a gynecologist, she talked about needing a bikini cut (and 6-week rest period after surgery) due to the position of my fibroid. She talked about potential problems occurring including cutting through the uterine wall and scarring between the uterus and bowels (making a later potential hysterectomy more risky). Have your physicians write short letters about your condition (s). The letters that I asked my physicians to write turned out to be very important in getting my denial of benefits overturned.

5) Write your own letter of “medical justification” and include it in your packet to your insurance company or external appeal agent. It helps to organize all of the information that you have gathered. To write my own letter, I included my medical history with supportive testing, letters from my physicians, hospitalization records, etc. You want to organize the wealth of information so that it is easily followed. You want to make it easy for the physicians reviewing your case to follow. Also, whether it helps or not I don’t know, you can some personal/social/occupational history as well. I feel it helps the reviewers see you as a person and not just as a case number. In my letter, I let them know I was a pediatric physical therapist and that my work with severely disabled children requires constant dynamic movement and heavy lifting. This way they knew that an extensive surgical procedure would require a prolonged absence from work.

6) Be very aware of deadlines. Make sure your paperwork is on time. If you are cutting it close, fax over the necessary paperwork and follow it up with a packet of mailed information.

7) When you get your first denial of coverage, notice the reason. For me, they stated that needed to be more sound research. So I gathered my own research articles through the internet. I also reached out to Insightec for copies of research articles that I could not get off of the internet (which they were very helpful in getting for me). You do not need to understand the whole research article. You just need to read the summary and see if it supports your cause- that ExAblate is safe and effective.

After reading the decisions of the independent reviewers (the external appeal agent gave me a copy), it was clear that my work paid off. Even one of my physicians thought that they wouldn’t really care about my medical history; they would only care about the research. But it is clear that 2 of the 3 reviewers did care about my history as well as the research. They basically wrote in their decision that although there are concerns with the research on the ExAblate, it is proven to be safe and effective and the best alternative given my medical history.