Friday, August 22, 2014

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.




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. 

Wednesday, August 20, 2014

#Obamacare Bankrupting Our Family

J top. S bottom. We've paid a total of $5,285.49 in covered prescription copays in 2014 already, $520 for prescriptions not covered...don't have a total for OTC mito cocktail yet. Insurance has paid $232,813.99 for their meds. S is now 18, that's why accounts are separate. Our total OOP medical, not including premiums paid, is $16,339.89 billed..... That's $2,042.49 per MONTH of medical expenses. HOW is this affordable!?  Before #Obamacare, we liked our plan and it was more AFFORDABLE!!!! Don't forget our premiums have increased during this nightmare rammed down our throats, too. If you share nothing else today, share this to let others know that the UN #ACA is harming REAL families. Middle class working families who have to pay IMO lots of $$$ in taxes so that others get "free" stuff. It is immoral to push my family further and further into debt so that others get "free" stuff while my children's healthcare gets put in jeopardy. 

Can you believe that this is happening in AMERICA!? Of course next month, a majority of my kids Mito Cocktail is no longer covered.... Thanks Obama.

Monday, August 18, 2014

Another Letter-Another Med No Longer Covered

The picture speaks for itself. Our 11th letter. The 20th part if their mito cocktail no longer covered. 

Good Article About My Family's Healthcare Situation

Thanks to Ann Kane for writing an article about my family! You can read the article on WatchDogWire at this link:

I think the article is thoughtful and well done. The only correction I'd make is that we had over 27k in out of pocket medical last year. We only paid 21k in medical bills (cash and mostly credit) last year... 

I was impressed by the people she interviewed. I sincerely hope we can get the compounded medications covered like the Express-Scripts representative said would be done for those who "needed" them.  She quoted from the letter our doctor sent to the insurance company. I will try to post that later. 

Please read the article at the link above, share and post comments. We are not the only family affected by Obamacare in this way. The cost cutting measures by insurance companies BECAUSE of the extra financial burden placed upon them by Obamacare are affecting many! 

Tuesday, August 12, 2014

Senator Kay Hagan Visit and Protest

Last Thursday, Freedomworks activists got together to visit Kay Hagan's Greensboro office to discuss concerns about Obamacare. On the top of the list- insurance bailouts and IRS involvement. It was great timing to have this event, as we'd received letters earlier that our boys' meds will no longer be covered starting next month! Here are some pics from the visit and subsequent protest.

Our group outside of Hagan's office. 

Talking to staffers....who rolled their eyes as some people were speaking to them. 

Me with my sign. 

I love Mildred. I want to be her when I grow up. My favorite patriot.