- Posted February 16, 2014 by
Saint Cloud, Florida
This iReport is part of an assignment:
Living with a rare disease?
A Rare Treatment for a Rare Cancer
Imagine this: You’re a supplier (insurance company) for a customer (patient). It’s your responsibility to get your customer the items they need (medical treatment) that are deemed necessary by their manager (doctor). You don’t carry the item in your own warehouse (in-network), so you have to go to a different supplier to get what your customer needs.
If you were the company (Surgeon or hospital) that carried the item (lifesaving surgery), would you think it was fair if the requesting supplier tried dictating the terms to get what they needed from you?
I have a rare cancer known as multicystic peritoneal mesothelioma. There have been only 150 cases reported worldwide.
I need a lifesaving surgery: Cytoreductive Surgery with chemotherapy delivered a unique way. Hyperthermic Intraperitoneal Chemotherapy, also called HIPEC, is where a surgeon pours heated chemotherapy directly into the abdominal cavity during surgery. The surgery and HIPEC are both FDA approved, but very few doctors are qualified with sufficient experience to post successful outcomes.
In the list of items of concern at this moment, do you think one of them should be if my employer will pay for it?
Florida Hospital / Florida Hospital Healthcare System approved a single case contract with Dr. Sugarbaker and Washington Hospital Center in Washington, D.C. for me to have this lifesaving surgery in 2012. I underwent a grueling 7 hour surgery and remained in the hospital for 15 days. Survivors who have also had this surgery with Dr. Sugarbaker call Cytoreductive Surgery with HIPEC, “being hit by the Sugarbaker bus”.
Follow up treatment includes CT scans every 6 months to check for new cysts. My most recent scan in December 2013 showed cystic structures developing once again. Surgery is my only treatment option.
Unfortunately, I am not yet allowed to worry about whether I will survive this next surgery, nor can I ponder the amount of pain I will experience while recovering. On hold are things like scheduling flights from Fnnlorida to Washington, D.C., as well as getting my affairs in order “just in case”. This is because my insurance company is unwilling to sign another single case contract with Dr. Sugarbaker.
My local surgeon who works together with Dr. Sugarbaker has told me he does not perform this surgery, nor is it performed anywhere in my insurance network. He wants me to be treated by Dr. Sugarbaker, “because he has the best outcomes, and to not allow me to go forward with this surgery would threaten my life”. He has written a letter to my insurance company stating this as his medical opinion.
This is the same disease, with the same doctor, hospital, and surgical treatment. I am not sure why we are arguing over the same facts a second time. It feels cruel and unnecessary. I feel like I am being penalized for having a rare disease that few doctors can treat.
All I am asking is that Florida Hospital Healthcare System grants me the same treatment that they did in 2012 so I can continue to serve others through my job in their time of need. Is it too much to ask that they serve me now that it’s my time of need?
I’ve started a Change.org campaign to try and convince my employer (who is also my insurance company) to sign a single case contract with Washington Hospital Center/Dr. Paul Sugarbaker so I can have the same treatment and surgery I had back in 2012. So far it’s earned over 2,000 signatures.