Mitococktail insurance coverage.
Asking congress to make coverage of non traditional medicines used to treat those with metabolic and mitochondrial disease.
More than one in 4,000 children in the United States will develop a mitochondrial disease by the age of 10;
? Each year between 1,000 and 4,000 in the U.S. are born with a type of mitochondrial disease;
? The reason for this broad range is that majority of these diseases are very difficult to diagnose;
? This is a disease which has no effective treatment and no cure; and
? While symptoms vary greatly, mitochondrial disease can lead to muscle weakness,
blindness, deafness, even unexplained strokes and seizures, and eventually death.
? Mitochondrial dysfunction has been implicated in Alzheimer?s disease, Parkinson?s disease, diabetes, hypertension, heart disease, osteoporosis, cancer and the aging process itself.
In fact, the NIH has recognized the importance of mitochondrial medicine research. Its institutes have collaborated with the UMDF to create a workshop at the NIH on primary mitochondrial disease. This workshop will serve as the starting point to create a research plan at the NIH into mitochondrial medicine. We must work to ensure that mitochondrial medicine remains in the forefront of science at the NIH.
Furthermore , mitochondrial disease , because of its unforeseen complications, can be extremely costly for patients and families. The Many trips to specialist , multiple stays away from home for specialty out patient procedures , numerous medical devices ( cpAp or bipap machines, wheelchairs, hospital beds, oxygen concentrators), along WITH COSTLY OVER THE COUNTER SUPPLEMENTS USED TO IMPROVE EVERYDAY QUALITY OF LIFE can financially suffocate a family.
THESE SUPPLEMENTS CAN COST ( in my case ) over $700-1000 per month. On my SSDI of $1500 monthly I could never afford to live as my travel expenses cost more than this on some months ( when symptoms flare up and I have to travel 400 miles to see my nearest specialist.)
IT IS IMPERATIVE THAT YOU PASS A LAW TO SUPPLY COVERAGE TO THE PATIENTS FOR THESE SUPPLEMENTS. THEY WORK TO IMPROVE OUR QUALITY OF LIFE AND WITHOUT THEM ( as I have had to go without because I can't afford them) my
Life consist of spending most of my day laying in bed, in pain , asking for help getting up and needing assistance for most everyday task. These SUPPLEMENTS are my lifeline and without them LIFE SUCKS.
PLEASE , we need your HELP.
? Each year between 1,000 and 4,000 in the U.S. are born with a type of mitochondrial disease;
? The reason for this broad range is that majority of these diseases are very difficult to diagnose;
? This is a disease which has no effective treatment and no cure; and
? While symptoms vary greatly, mitochondrial disease can lead to muscle weakness,
blindness, deafness, even unexplained strokes and seizures, and eventually death.
? Mitochondrial dysfunction has been implicated in Alzheimer?s disease, Parkinson?s disease, diabetes, hypertension, heart disease, osteoporosis, cancer and the aging process itself.
In fact, the NIH has recognized the importance of mitochondrial medicine research. Its institutes have collaborated with the UMDF to create a workshop at the NIH on primary mitochondrial disease. This workshop will serve as the starting point to create a research plan at the NIH into mitochondrial medicine. We must work to ensure that mitochondrial medicine remains in the forefront of science at the NIH.
Furthermore , mitochondrial disease , because of its unforeseen complications, can be extremely costly for patients and families. The Many trips to specialist , multiple stays away from home for specialty out patient procedures , numerous medical devices ( cpAp or bipap machines, wheelchairs, hospital beds, oxygen concentrators), along WITH COSTLY OVER THE COUNTER SUPPLEMENTS USED TO IMPROVE EVERYDAY QUALITY OF LIFE can financially suffocate a family.
THESE SUPPLEMENTS CAN COST ( in my case ) over $700-1000 per month. On my SSDI of $1500 monthly I could never afford to live as my travel expenses cost more than this on some months ( when symptoms flare up and I have to travel 400 miles to see my nearest specialist.)
IT IS IMPERATIVE THAT YOU PASS A LAW TO SUPPLY COVERAGE TO THE PATIENTS FOR THESE SUPPLEMENTS. THEY WORK TO IMPROVE OUR QUALITY OF LIFE AND WITHOUT THEM ( as I have had to go without because I can't afford them) my
Life consist of spending most of my day laying in bed, in pain , asking for help getting up and needing assistance for most everyday task. These SUPPLEMENTS are my lifeline and without them LIFE SUCKS.
PLEASE , we need your HELP.
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