Two of Pattie Curran’s three sons have rare bone marrow failure syndrome combined with a secondary mitochondrial disease.
Life’s been tough, but they’ve made it work.
From the description of a new video produced by Nicole Revels (published below): this Piedmont-Triad family “has witnessed their family’s insurance coverage slip away as premiums, deductibles, and medication co-pays have drastically increased with the implementation of mandates contained within the Affordable Care Act. Pattie has now been notified that her sons’ life-saving compounded medications will be dropped from coverage all together as of September 15, though her family’s medications and treatments were covered for years with no denials prior to 2011.”
Their doctor sent the following on their behalf, clearly explaining the necessity of the coverage.
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.
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.
Sadly, even professional intervention was not enough. The response came and Pattie posted the following on her Facebook wall:
Denied. Denied. Got the denial letters in the mail. All of their mito cocktail meds. Every. Single. One. Not covered. The letter says we can’t appeal until our plan changes (again).
We liked our plan but we can’t keep our plan. These meds were covered for many years before #Obamacare.
Off to have a nervous breakdown.
You can read more about Pattie’s personal experiences at her blog.
Here is her video interview with Revels.
Donations to the family can be sent via this LINK.