In 2003, Dominick Spatafora was diagnosed with multifocal motor neuropathy, a progressive muscle disorder that causes muscle weakness, cramping, and wasting in the hands and twitching of the legs. Treatment usually consists of intravenous immunoglobulin (IVIg) or immunosuppressive therapy with cyclophosphamide. Most patients who receive early treatment experience little, if any, disability; without treatment, the disease can become increasingly painful and debilitating.
Right before my thirtieth birthday, I developed a serious tremor in my right hand, recalls Spatafora. I was diagnosed with amyotrophic lateral sclerosis (ALS) and given three years to live. I received a second diagnosis of ulnar nerve transposition and was told I'd need surgery. Finally, I was diagnosed with multifocal motor neuropathy and started on IVIg immediately.
IVIg was a miracle drug for me, until my insurance provider told me that there was a national shortage. Spatafora did some detective work and discovered that the reason for the denial was more an issue of reimbursement than supply. Meanwhile, I had gone three months without treatment and lost the use of three fingers. He appealed the decision and won.
The first line of the letter back from the insurance company read, Dear Mr. Spatafora: We're pleased to inform you that we're granting you the appeal, but please do not discuss this with any other patients.
That's when I lost it, Spatafora says. He channeled his anger into forming the Neuropathy Action Foundation (NAF) to educate the public about neuropathy, empower patients to take control of their health care, and teach people how to appeal denials at the state level.
There are 20 million Americans affected by some form of neuropathy, Spatafora says. One out of two people with diabetes have it. It's the biggest disease that people have never heard of.
The NAF is holding Neuropathy Action Awareness Day on June 26, 2007 at the University of California at San Francisco. This free event will include seminars and an evening reception and entertainment. Go to neuropathyactionfoundation.org for more info.