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.

Wednesday, August 6, 2014

Next Month: Our Boys' Meds Will No Longer be Covered!

Everything I have said about Obamacare has come to fruition. I knew that insurance would drop their mitochondrial disease cocktail medications first. I've said it so many times and it's finally happened.  I hope my prediction about losing insurance next year is wrong!

We received TEN letters stating that as if 9/15/14 our plan will no longer cover compounded pharmaceuticals with < list 19 of the ingredients of their mito cocktail>. Those letters did wonders for our stress level. 

If we can't get the mito cocktail covered, we can't afford the thousands of dollars each month to purchase them without insurance. What do these medications do? For starters, there is no cure for mitochondrial disease. The only treatment is high dose <expensive> supplements that target the mitochondria and their function. Mitochondria, as you'll remember from biology 101, are the powerhouses of the cells.

My boys have OXPHOS deficiencies and the powerhouse chain doesn't function properly. They aren't energy efficient, in lay terms. The supplements help them to be more efficient, create more energy and to live more normal lives. Mitochondrial disease is also known as a neuromuscular disease. Muscles need energy to function, nerves...our entire bodies. We have mitochondria in every cell of our bodies, except red blood cells. 

Prior to starting the mito cocktail, my youngest son choked and had micro aspirations into his lungs all day long (dysphagia is the medical term for this set of symptoms). Every meal was a nightmare. His bladder function was worse. He tripped over nothing constantly because his weaker foot drags when he's tired. With mito, there is always some level of fatigue. He would sonetimes "blank out" while reading or doing small tasks. He describes it as being here, but not being here. He can see and here what is going on, but his brain is frozen and he can't respond.  His doctor explains that the brain takes a lot of energy ( mitochondrial energy) and when another vital organ needs energy at a time when there isn't enough, it will slow things down in the brain ( again, my lay regurgitation of what we've been told) Within three months of starting the cocktail, he was choking and aspirating less ( we have before and after swallow studies showing a difference), his foot was dragging less, tripping less and we noticed differences in fatigue levels. He has less frequent "blank outs", as he calks them.  These supplements have changed his life.

My middle son has chronic fatigue and migraines from mitochondrial disease. Within three months if starting the mito cocktail, we noticed a huge improvement. He was often too tired to participate in sports practice, fell asleep sitting up in spite of 8-10 hours of sleep the night before. He had sleep studies to make sure there wasn't something wrong (apnea, restless leg...) with his sleep causing his daily fatigue. He had difficulty doing school work! These supplements have changed his life. 

Their doctor actually tests blood levels and blood leukocyte levels of these supplements to make sure they are receiving the correct dosages. They each have different variants of the mito cocktail, based on their symptoms and individual needs. They are monitored closely!  

Before sharing the photos of the ten letters, I have a few more things to say.  We are working on appealing the decision. So far, no one is sure we can even gain coverage, but we are trying and praying.  Express-Scripts has cut compounded medications across the board as a cost cutting measure- see article link below pictures. I have no doubt they are cutting costs because if the burden placed upon them by Obamacare. These medications have been covered for YEARS without a problem.  Like the medication protecting my son's kidneys from damage, Obamacare regulations and costs are making life with and for the chronically ill more onerous. 

Finally, I have private information blocked out, including the drug names. If you need more info, contact me. My almost 17 year old still has not been able to finish driver's ed and get his permit because some lunatic in the driver's ed program turned him into the state for a benign medication he takes. His doctor was appalled, filled out the necessary paperwork for the state and he has yet to be able to finish the course. It has been over one year! This action also flagged him and he must be reviewed again every few years. By the time he ever gets around to qualifying for a permit, he'll be up for review again. Can you see the process going as a perpetual, unending inability to drive? 10 months before the next review. Wouldn't it have been nice if the person had just asked to speak to my son's physician before turning him into the state? Alas, some people think government is the solution to every problem. Sighs. 

The letters:

Article about express scripts cutting coverage. Wish I'd of seen this before the letters arrived