Bay Area Man Starts Neuropathy Awareness ProgramWants To Inform People And Lawmakers
 

Bay Area Man Starts Neuropathy Awareness ProgramWants To Inform People And Lawmakers About Condition
By Carolyn Johnson


Jun. 19 - KGO - Chances are you know someone who has neuropathy -- a disease that affects some 20 million people in this country, causing numbness, pain, even paralysis. But one Bay Area man has taken charge of his disease and is now empowering others to do the same.

Dominick Spatafora, Neuropathy Action Foundation: "The way it started was a pretty serious tremor in my right hand."


Dominick Spatafora was 31-years-old at the time.

Dominick Spatafora: "I didn't think much of it initially, but then I realized I wasn't able to close my fingers."

Figuring out what was wrong took a year.

Dominick Spatafora: "I was misdiagnosed twice, first with Lou Gehrig's disease and I was told I had 3 to 5 years to live, and then I was diagnosed with something with my ulnar nerve."

Ultimately he learned he had multi-focal motor neuropathy. The treatment: I.V.IG -- intravenous immune globulin therapy.

Dominick Spatafora:"This was an absolute miracle drug, from my very first infusion, I gained back the use of my fingers, the tremor stopped completely. It went away all my symptoms disappeared immediately."

But when Medicare changed the reimbursement rates for I.V.I.G in 2005, Dominick's health plan would no longer authorize the treatment. It is expensive, for Dominick, about $80,000 dollars a year. For three months he fought to have it reinstated.

Dominick Spatafora: "I did wake up one Sunday morning I will never forget this, and I had completely lost the use of the fingers in my right hand. Being 31 years old at the time, owning my own business, relying on a Blackberry, it was absolutely devastating."

After months of negotiation, Dominick succeeded in getting his insurance to pay for his I.V.I.G, a battle that inspired him to do more.

Dominick Spatafora: "Knowing how to work the system and still struggling to the degree I did, I thought for a second, what do senior citizens do? The vast majority of neuropathy patients are senior citizens in excruciating pain."

Dominick is a health care consultant and an expert in health care administration. He turned his knowledge into advocacy, and created the Neuropathy Action Foundation -- a non-profit focused on education and empowerment.

Dominick Spatafora: "We want to help patients, we want to give them the tools to be able to fight their plans and obtain the necessary treatments, medications, etc. that their physicians feel are best for them."

Renowned neurologist Jonathan Katz of California Pacific Medical Center serves on Dominick's advisory board.

Jonathan Katz, M.D., Chief of Neuromuscular Services, California Pacific Medical Center: "What Dominick's doing is kind of unique because he's kind of bringing the idea of patient support and political action together into one category and I think its a very powerful combination and it's going to be very useful for this disease in the long run."

In March, Dominick organized this news conference on the capitol steps in Sacramento to draw attention to the I.V.I.G crisis, and he's spoken before the Arizona state senate as well.

Dominick Spatafora: the best way to predict the future is by creating it, and i think that we're really instilling a sense of that in patients, that they need to take power, and take control of their health care for their futures."

And his neuropathy action foundation offers the tools to help get them there.

To learn more about this condition, please visit:

Neuropathy Action Foundation

Neuropathy Action Awareness Day

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