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

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