Bad News On the External Appeal

Bad News On the External Appeal

Unfortunately, our external expedited appeal went very badly.

It was assigned to an Indepedent Review Organization named MCMC. The nurse who assigned the case, according to the Massachusetts Health and Human Services website, has her nursing license listed as “Stayed Probation.”

She and her colleague assigned the case to a a physiastrist who also has specialties in accupuncture and osteoporosis. Generally, physiatrists do not prescribe medicine. My wife’s bones are fines. She doesn’t need accupuncture. Nowhere does it mention any qualifications with genetic diseases, neuromuscular conditions, medicine to treat them, or management of high risk pregnancies.

The denial letter suggested that this pain doctor who does acupuncture knew little about regaining function in this rare neuromuscular disease and knows little of pregnancy. She made many general comments, but did not tie it into my wife’s specific circumstances. This is a shame since I spent several pages in the appeal talking about it:

  • said she had reached maximum function and predicted no further improvement without mentioning she was 8 months pregnant
  • said she had reached maximum function and predicted no further improvement without mentioning her medicine or its results
    • the prescription medicine that reversed the course of this disease
    • the progress she made with that prescription medicine
    • nor the planned increases in dosing / ingredients post-pregnancy
  • said my wife reached maximum function without mentioning much of her specific circumstance
  • merely selection portions of an abstract of one of 30 articles I included
  • offered no rebuttal to why this pain doctor disagreed with letters from my wife’s neurogeneticist, neurologist, endocrinologist, and consulting neuromuscular specialist about how she was regaining function.

The denial letter started with a clinical summary of her condition, selecting only certain aspects from the 10 months prior neurogeneticists report, before medicine was started. It neither listed her genetic defect, nor her medicine. But most significantly, it did not list her predominant medical issue and reason for the expedited appeal: that she was 8 months pregnant. Month 8 of a pregnancy is accompanied by Braxton-Hicks contractions, irritation from pelvis expansion, and difficulty breathing. Yet this pain doctor concluded my wife achieved maximal function? I do not understand since I thought pregnancy is temporary. Nor do I understand how it is “maintenance therapy,” since the appeal showed improvement and predictions of improvement post-pregnancy. Her pregnancy was on every page of the appeal and I included 4 articles on pregnancy and this disease. I believe this omissions show a physical medicine doctor who claims to specialize in pain and acupuncture and osteoporosis and who does not have a web site, was not appropriate to review my wife’s pregnant and neuromuscular condition.

I was also surprised the pain doctor said my wife achieved maximal function without any mention of her prescription medicine. This medicine wasvnot for pain !!! As I wrote earlier, it was started many months before and we saw significant strength improvement through Sept 2011. Her OB / GYN would not allow increased dosing until after the pregnancy. Therefore, it was impossible for my wife to have reached maximum function yet. Nowhere did this doctor discuss how the medicine works, nor why she thinks further increase will not lead to further restoration. In fact, she never mentions medicine anywhere in the denial, probably because she doesn’t use these medicine. My wife visited 40 doctors who had no idea to try medicine, until we saw this neurogeneticist at a prestigious clinic. The medicine was mentioned frequently in the appeal and I included 8 articles on how it improved patients with defects on this gene. I believe these omissions show she was the wrong reviewer.

The pain doctor selected parts of an abstract of one of the 30 articles I included, suggesting she knew little of this rare neuromuscular disease and pregnancy. That article (like her denial and her answers to my questions), neither mentioned pregnancy, nor the medicine. Twice in the appeal, I indicated 8 other articles were more specific to my wife’s problem gene than this one. The 30 articles covered physical therapy for these disease, physiology and pharmacology of the medicine, and management of pregnancy with neuromuscular disease. I also included Eagle 2002, on exercise and neuromuscular disease, which says, “The majority of therapists have little experience with inherited adult neuromuscular conditions and are unable to offer advice based on evidence or experience,” This should have alerted both the nurse at the IRO and this pain doctor reviewer that she could not review a case involving a rare genetic neuromuscular disease.

Overall, the denial letter really said very little about my wife’s specific condition. After paraphrasing that article, she made one comment about the physical therapy notes, responded to my point about safety, made general comments about maintenance therapy, and then concluded her therapy was maintenance. She did not address the ample evidence I provided that her function was being restored, or on medicine, or pregnancy.

To support the appeal, I had three of my wife’s physicians, her neurologist, her OB / GYN, and her endocrinologist write letters of support. But in this case, the doctor from the IRO was not even in the right specialty, which I believe violates the guidelines on medical specialty, which unfortunately, had a grace period on enforcement.

This external appeal denial letter suggested that this physical medicine pain doctor who has no web site rendered a non-appealable decision overruling my wife’s neurogeneticist, neurologist, and OB / GYN on a condition that she poorly understood. Most neurologists will never see someone with this disease their whole career. Even fewer will see them 8 months pregnant. And who in their right mind will claim that a woman who is 8 months pregnant has hit maximum function?

I also looked up the address for this doctor listed on Healthgrades in Zillow. It shows a townhouse on a golf course, in a 55+ community. Is she still in practice? I looked up the address in Zillow that is with the state’s Medical Board. That address maps to a house that was sold for $750k or so. This was definitely the wrong person to be reviewing my wife’s condition.