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Patient Advocacy: A Success Story

This is a guest post from Dr. Steven Reznick.

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Patient Advocacy: It’s Worth The Effort

I have a 61-year-old patient who has been seen in my practice for over thirty years. When she first started developing strange aches and pains as well as abdominal symptoms, her evaluation turned up nothing. At that point she was very active: Playing ball with her two growing sons and dancing the nights away wearing out dance partner after dance partner at community social functions.

When I could not determine the cause of her ills, I asked for help at reputable places including the University of Miami rheumatology division and gastroenterology division. Like so many illnesses, the disease remained a mystery until it was ready to show itself and until technology and progress developed diagnostic tools to allow us to see what is actually there. With the help of a brilliant local gastroenterologist and rheumatologist, and after trips to Johns Hopkins Medical Center and the Mayo Clinic, collagenous colitis and sarcoidosis were documented. In the interim, local medical doctors and her friends branded this poor woman as “another neurotic spouse of a doctor who liked narcotics.”

She developed a peripheral neuropathy, which meant her feet and legs hurt all the time with burning/shooting discomfort exacerbated by walking. She went from dancing the Lindy to hobbling with the assistance of her husband, and a cane from the bedroom to her kitchen. She would then have to sit down, massage her legs, and put on thick-cushioned sweat socks to tolerate the foot and leg discomfort.

When her local rheumatologist had lost patience with the frustration of not being able to help her with the off-label use of drugs like gabapentin, lyrica, antidepressants, anti anxiety drugs, anti inflammatory drugs and narcotics, I recommended she be seen by the most acclaimed rheumatologist clinician in the United States. 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 read the article and called the doctors in Cleveland. They were warm, encouraging and helpful. They sent additional 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.

It took several weeks for the biopsy specimen results to confirm the diagnosis. We decided to try the IVIG and arranged for the daily infusions for five days out of each month, only to be turned down for reimbursement by Aetna Insurance Company. The medication costs about $8,000 per month. I wrote two appeals for the patient and faxed them off to Aetna, only to be quickly turned down because it was considered “experimental.”

Experimental? The Cleveland Clinic, the Mayo Clinic, and the Weitzman Institute in Israel have been using this drug successfully to treat small fiber neuropathy for years. The group in Cleveland had built on previous works in this area and developed an administration regimen and dosing that actually provided relief in 70 percent to 80 percent of cases. Nothing else worked.

Aetna was bound by law to offer another appeal. A teleconference was scheduled. I did my homework begging the rheumatologist in Cincinnati to assist me. He did not. I asked the local neurologist to help me, but “he was out of town not near a phone.” Fortunately the care team in Cleveland, along with their lead physician, supplied me with information and data and prepped me like an attorney preps a witness before a trial. The lead physician offered her time to participate, but Aetna would not alter the time of the appeal to accommodate her. I was on my own. Her husband assisted me with preparations and joined the conference on his wife’s behalf.

When I called in to the conference line and gave my password, I felt like David facing Goliath. When I was introduced to their panel of surgeons and laypersons not familiar with the disease, I felt encouraged. I decided to slay them 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 be carrying 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 treatments and off-label treatments they previously approved, had not worked. I then gave them an educational teaching session from the literature, quoting articles and experts on the subject from around the world. I told them that we now had a rare disease with a treatment that actually worked, quoting soon-to-be published success stories from around the world — all accumulated and performed at very reputable institutions.

The physicians representing Aetna thanked me for being my patient’s advocate. They told me such participation is rare, but it certainly gave them a much clearer picture of the situation and choices. They said a decision will be made within two weeks and we will be informed by mail of their decision.

I hung up the phone feeling very positive. I had taken the time to become an expert on my patient’s illness and fought for their care to the best of my ability. I called my patient and reported what had transpired and informed her that we would have about a two-week waiting period for a decision to be made. Then I sat back and picked up my yellow legal pad and drafted an outline of how I would approach the next appeal in the event this appeal was denied.

Several days had passed when my patient received notification of Aetna’s decision of our appeal. The news was fantastic — our appeal had been approved. I knew in my heart, regardless of the outcome, that advocating on behalf of my patient was the right thing to do. It was worth the effort.

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Steven E. Reznick, MD, FACP is board-certified in internal medicine with added qualifications in geriatrics. He has practiced internal medicine in Boca Raton, Florida and the surrounding communities since 1979.

Dr. Reznick has been frequently recognized by his peers as a “Best Doc” as published in the Miami Herald, Miami Magazine, and by the Consumer Research Council. He spent several years as a Clinical Assistant Professor of Biomedical Science at the University of Miami, Miller School of Medicine, at Florida Atlantic University.

In 2006 Dr. Reznick converted his traditional internal medical practice to a concierge model. His education, experience, and expertise coupled with his commitment to proactive care and hospitality services makes him a uniquely-qualified healthcare advocate for each of his patients.

More recently, Dr. Reznick started the Boca Raton Concierge Doctor blog. He has been a guest blogger on the nationally-acclaimed blog, KevinMD.com.

Dr. Reznick graduated Summa Cum Laude from the Brooklyn College of the City University of New York. He also graduated Summa Cum Laude from the State University of New York-Downstate Medical Center. He has held leadership positions at numerous medical associations, educational organizations, civic organizations, and sports advisory committees.

Disclosures: None


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One Response to “Patient Advocacy: A Success Story”

  1. Wally says:

    Is it relevant that the author practices as a concierge? And what on earth will medicine be like in another 10 years when it takes this kind of intervention today to get our patients the care they deserve?

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