Patient Advocacy – The Decision

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.

Advocacy Makes You Feel Good

I have a 61 year old patient who is the wife of a prominent local physician and has been 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 a trip 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 recommend she be seen by the most acclaimed rheumatologist clinician in the United States.  She consented and went out 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 $8000 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 were 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 70-80% 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 lay persons 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 when this appeal is denied.

Electronic Health Records – A Better Way?

Five years ago my associate and I invested sixty thousand dollars to purchase and set up an electronic health record system and eliminate extensive paper use. We researched all available systems and decided upon MediNotes because it was a large company with an excellent record of service and their system met all the national requirements for certification. We worked through our local computer vendor’s family run business because they had supplied and serviced our electronic billing system well for years.  Their fees included an annual software maintenance fee and an annual hardware maintenance fee which, combined, cost several thousand dollars per year.

We were overjoyed when Congress passed the American Recovery and Reinvestment Act of 2009 which said that we would be reimbursed up to $44,000 per doctor over 5 years for our investment and the meaningful use of the system. Shortly after learning the details of the law, MediNotes sold out to Eclypsis – a gigantic computer company.  We were told that Eclypsis had developed an updated MediNotes product called Peak Practice that met the new meaningful use criteria of the law.  The Peak Practice system implemented recommendations from MediNotes users to improve upon the software and user experience.

We were informed we could convert our system, or “migrate” to the new system, by paying an additional $7500 in fees for training, software and integration of our system with our websites. Due to a backlog of orders to “migrate”, we planned on contracting in the fall of 2010 to convert in the spring of 2011.  Once our decision was made, we requested the contract and other documents from our local vendor.  However, they did not appear.  We were then informed that Eclypsis sold out to Allscripts. Allscripts is a large health care services provider that has a large hospital computer health record business as well as a small practice electronic health record package branded “My Way” which my vendor has yet to see.

I am all in favor of capitalism. I am also in favor of investors getting back their money with a profit. I am not in favor of absolutely no federal oversight of the medical record computer industry.  The vendors have created a feeding frenzy for physicians seeing $44,000 as the carrot at the end of the stick. The vendors won’t wait for the federal payments for meaningful use to collect payment for their systems. They want their money up front. Meanwhile, computer companies continue to sell out to larger predatory companies leaving physicians saddled with a computer system that is obsolete and has no future technical support.

There has to be a better way.