To Whom It May Concern Re: HB 977

Feb. 20, 2014

To whom it may concern re: HB 977

My wife and I are lifelong residents of Norwell. My child has a serious medical condition called mitochondrial disease. I am writing to you in support of House Bill 977.
Mitochondrial disease is a genetic disorder that occurs when the mitochondria of the cell fail to produce enough energy for cell or organ function. It is a progressive neuromuscular disease, the common symptoms of which include muscle weakness and loss of muscle control, autonomic dysfunction, gastroparesis, metabolic acidosis, seizures, visual and hearing impairment, and heart, liver, and kidney disease.
Currently, there is no known cure for mitochondrial disease. However, use of high-dose vitamins and supplements that act on cell mitochondrial metabolism have been shown to improve a patient's overall well-being and to prevent further baseline deterioration. According to the leading mitochondrial disease experts at such places as the Cleveland Clinic and Mass General Hospital, these supplements constitute the frontline treatment for the disease.
Until recently, these supplements were covered by insurance and provided in compounded form - known by patients as the "Mito cocktail" - from several specialized compounding pharmacies in the state. However, insurers such as Harvard Pilgrim Health Plan have recently stopped covering the Mito cocktail. House Bill 977 would require insurers to reinstate coverage of it. Without coverage, families must pay thousands of dollars each month if they wish to purchase their prescribed cocktail of vitamins and supplements in compounded form. The insurers claim that patients can simply purchase these supplements over the counter rather than from the specialized pharmacies, which prepare them in consolidated, compounded form. The insurers' claim is unrealistic, though.

The reason is that the dosage for Mito patients can be many times more than the maximum recommended daily dosage for healthy people. So, not only do families incur significant out-of-pocket expense to purchase these, but also any given patient must take an inordinate number of over-the-counter pills just to reach their daily prescribed amount. Consider that the typical prescribed cocktail such as my child’s includes high doses of: CoQ10, vitamins (B-1, B-2, B-5, B-6, B-9, B-12, C, E), creatine, alpha-lipoic acid, L-carnitine, L-arginine, selenium, and biotin. For patients who already suffer from GI complications, this is especially onerous, and many cannot tolerate the non-compounded over-the-counter form. Moreover, the potency and safety of these over-the-counter supplements is unclear since they are not regulated by the FDA. So, physicians recommend only certain brands to their Mito patients, and these are the more expensive ones.
House Bill 977 requires that health plans cover prescribed treatments for mitochondrial disease, including the Mito cocktail. Please support House Bill 977 to mandate coverage of these vitamins and supplements to treat mitochondrial disease, as they are the only treatment option we have and make a life-saving difference in my child’s care. Thank you for your consideration.

Sincerely,
John Doe
Street Address
City, State, ZIP

cc: Local representative name, CITY, MA