Stand with Daphne – Help fight mitochondrial disease

One in 2,000 Californians is currently living with a Mitochondrial Disease, a disease that impairs energy production by the cell's powerhouse, the Mitochondria. Our 2-year-old daughter Daphne is one of the afflicted. She was diagnosed with Leukoencephalopathy with Thalamus and Brainstem Involvement with High Lactate (LTBL) shortly after her first birthday. She's sweet, spicy and stubborn, and deals with her disease every day.

There are many variants of Mitochondrial Disease, which present with a wide range of symptoms and severity, but they all have one thing in common: there is currently no cure.

There are, however, drug therapies which can greatly improve quality of life. A Mito Cocktail of vitamins and supplements can make a world of difference to Mito patients, turning bad days to good by maximizing the function of the Mitochondria.

Health Insurance companies are not required to cover these therapies in California. The drugs are relatively inexpensive and readily available, so there is no financial incentive for pharamaceutical companies to produce the drugs, study their effects, or compel insurance companies to pay for them.  The burden is shifted to the Mito patients and their families, at a cost of approximately $500-$1,000 per month. Earlier this year, Kentucky led the way and began requiring insurance companies to cover these treatments.

We are petitioning the State of California to require health insurance companies to cover the cost of the Mito Cocktail.  This provision makes financial sense, because by employing these readily available daily therapies, expensive treatments down the road may be minimized or avoided.  But it also makes moral sense.  These debilitating diseases affect life at its most basic level.  There is simply no justification for denying relief to those afflicted.

If you are interested in helping further to get this bill sponsored and passed contact desiree@daphneslamp.com