Letter From the Mito Doctor

Here is an excerpt from a letter of medical necessity the boys' mito doctor wrote to insurance. We pray that this means they will decide to cover the medication (for a year...because these Obamacare changes mean we have to do these things yearly, always worried coverage will end...of course, if we have insurance at all next year).

The doctor emailed me the letter he sent to insurance. I wish he hadn't. Don't want to believe any of this is true. I hate reality. The one sentence is kind of choppy.... "result in death as seen in..." The doctor is crystal clear about what will happen if the meds are no longer covered. 

August 15, 2014

Re: XXXX Curran (dob: XXX)

 

To Whom It May Concern:

 

I am writing on behalf of my patient XXXXX who I diagnosed with Mitochondrial Disease (ICD9: 277.87). 

 

He experiences muscle weakness and fatigue which affect his ability to engage in daily activities. He has deficient cellular energy production which causes neurological deficits, muscle pain and fatigue. He has difficulty swallowing and frequently chokes and microaspirates. 

 

Management of XXXX's disorder significantly depends on these [compounded medications] which have been shown in many studies to be helpful in improved muscle strength, increased energy levels, and slowing the progression of this disease (refs 1-3). He has been on the compounds that I've prescribed which resulted in a significant improvement in his swallowing, energy and strength as well as activities of daily living. 

 

As his primary Mitochondrial Disease specialist, it is my opinion that without this [compound] XXXX's muscle and organ functioning would decline significantly resulting in the life-threatening progression of his disease (well known part of natural course mitochondial disease) and subsequent extended hospital stays. 

 

If insurance coverage for the [compounded medications] is denied, XXXX may develop neurodegenerative symptoms which can result in death as seen in mitochondrial disease.

 

I would be glad to answer any questions and communicate further. I would also provide lab reports, clinic notes and scientific literature substantiating my assessment and recommendations.

 

References:

 

1. Parikh S, Saneto R, Faulk MJ, Anselm I, Cohen BH, Haas R, Medicine Society TM. A modern approach to the treatment of mitochondrial disease. Curr Treat Options Neurol. 3009 Nov; 11(6):414-30.

 

2. Dimauro S, Rustin P. Biochim Biophys Acta. A critical approach to the therapy of mitochondrial respiratory chain and oxidative phosphorylation diseases, 2009 Dec; 1792(12): 1159-67.

 

3. Tarnopolsky MA. The mitochondrial cocktail: rationale for combined nutraceutical therapy in mitochondrial cytopathies. Adv Drug Deliv Rev. 2008 Oct-Nov;60(13-14): 1561-7.