An active 61 year female, who has been in my practice for 30 years, developed strange aches and pains and abdominal symptoms. My evaluation turned up nothing.
I then asked for help at the University of Miami rheumatology and gastroenterology divisions. With the help of a brilliant local gastroenterologist and rheumatologist, and after a trip to Johns Hopkins Medical Center and the Mayo Clinic, collagenous colitis and Sarcoidosis were documented.
The patient developed a peripheral neuropathy which meant her feet and legs hurt all the time with burning / shooting discomfort exacerbated by walking. When her local rheumatologist had lost patience after the unsuccessful treatment with off-label drugs; I recommend she be seen by one of the most acclaimed Sarcoidosis specialists in America. She consented and went to Cincinnati.
The consulting physician discussed small fiber neuropathy as the cause of her pain. Fortuitously, an article arrived from the Cleveland Clinic describing the diagnosis and treatment of this disease with intravenous immunoglobulin (IVIG). I called the doctors in Cleveland. They were encouraging and helpful. They sent information and references, instructed me on how to obtain and transport the skin biopsies (required to confirm the diagnosis) and, explained the nuances of treatment.
The biopsy results confirmed the diagnosis. We decided to try the IVIG treatment – only to be turned down for reimbursement by Aetna Insurance. The medication costs about $8,000 per month. I wrote two appeals and Aetna turned them down because the treatment was considered “experimental.”
Experimental? The Cleveland Clinic, Mayo Clinic and Weitzman Institute in Israel were using this drug successfully to treat small fiber neuropathy for years. The group in Cleveland provided relief in 70 – 80% of cases. Nothing else worked.
A teleconference was scheduled for one more appeal. I requested the assistance of the rheumatologist in Cincinnati as well as a local neurologist. Neither provided any.
Fortunately the care team in Cleveland, along with their lead physician, supplied me with ample information and data. They also prepped me.
When I called the conference line I felt like David facing Goliath. I decided to slay their surgeons and lay persons with civility, professionalism and data. I painted a personal image of the patient’s life before her illness and now. I wanted the panel to carry the image of a human being in their minds and the devastation the disease was causing as they deliberated.
I explained that all the conventional and off-label treatments they previously approved, had not worked. I then provided information from the literature, quoting articles and experts on the subject. I told them we had a rare disease with a treatment that actually worked.
The Aetna representatives thanked me for being my patient’s advocate. They told me such participation is rare and it gave them a much clearer picture of the situation and choices. They said a decision would be made within two weeks.
I had taken the time to become an expert on my patient’s illness and fought for her care to the best of my ability. I felt positive about the call.
Several days passed before my patient received notification of Aetna’s decision of our appeal. The news was positive. The appeal was approved.
I knew in my heart, regardless of the outcome, it was well worth the effort.
Steven Reznick is an internal medicine physician and can be reached at Boca Raton Concierge Doctor.
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