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Activist, Yolo Neuropathy Groups, provide a voice and support for people with 'the most common disease you've never heard of'

By Emily Lavin | Enterprise correspondent | December 21, 2007 12:00

Dominick Spatafora, president of Neuropathy Action Now, feeds a kangaroo and emu in Australia during a Christmas vacation last year. Spatafora, who has multiple motor neuropathy, said that without the medical treatments he had to fight his insurance company for, he would not have been able to feed the animals or even hold the cone. 'The food would have fallen through my fingers,' he said. (Courtesy photo)

A few years ago, Dominick Spatafora started experiencing tremors in his right hand. He noticed he couldn't squeeze his fingers closed on that hand either.

After months of tests, visits to doctors from Sacramento to the Bay Area to Arizona, and more than one misdiagnosis, Spatafora finally learned he had multiple motor neuropathy, a disease that attacks the nerves and results in abnormal sensations and pain. Spatafora's doctor started him on the plasma-derived medication IVIG.

The medication worked to halt Spatafora's shaking, pain and freezing limbs. But then his insurance company put a halt to his treatment - a national shortage of IVIG made it too expensive to keep providing.

Spatafora, who spent years working in the healthcare policy field - he now teaches it at the University of Phoenix - spent the next three months fighting the system to regain access to the drug.

Meanwhile, the symptoms of his neuropathy began to surface once again.

'I woke up one Sunday morning and I was paralyzed in my entire right hand. For a 30-some-year-old man who relies on a laptop and this,' Spatafora said, holding up his blackberry device, 'it was absolutely devastating.'

Spatafora's lobbying was enough to restore his treatment. But his personal struggle opened his eyes to others diagnosed with one of the 100 different types of neuropathy. These people, he realized, may not have as much time, strength or understanding of the system to challenge the health care plans that are more and more frequently denying patients access to IVIG because of its cost.

At a recent meeting of the Yolo neuropathy support group at the Center for Restorative Health in Davis, Spatafora, who founded the group Neuropathy Action Now, spoke of the need to empower neuropathy patients with information, resources and tools to help them access treatment. He also called for increasing public awareness toward what he called 'the most common disease you've never heard of.'

While many doctors and health plans argue that IVIG is not FDA approved, proponents of the drug point to an abundance of medically approved and peer-reviewed studies affirming its benefits, as well as the proof of patient results - many neuropathy patients, Spatafora said, rely on IVIG to keep themselves mobile, and, he says nine people have died this year because of restricted access to the drug.

Access has become especially difficult recently, with Medicare changing the reimbursement rates for IVIG, Spatafora said, meaning hospitals have to charge more for the drug. And, Spatafora noted, often private plans follow Medicare's lead.

'Healthcare plans are doing everything they can to minimize their costs,' Spatafora said, adding that the trend likely will not stop with IVIG but go on to affect patient access to other drugs. 'As deficits climb, it's only going to get worse.'

The California Association of Health Plans responded to Enterprise questions about patient access to drugs with a statement by President and CEO Christopher Oman. 'The health care industry continually works with the medical research community and reviews medical evidence to assure coverage decisions are based on the latest expert knowledge and opinion,' Oman said. 'When there is a dispute between a plan and a member or their provider over coverage, members have a readily available and well-established option to ensure they are covered for medically effective treatments.'

But difficulty in accessing affective treatments for neuropathy was a theme that rang all too true for the 10 people present at the Davis meeting, some diagnosed with neuropathy themselves and some with family members battling the disease.

The problem is not as simple as healthcare plans versus patients, said Glen Cooley, who was diagnosed with peripheral neuropathy 15 years ago after a series of misdiagnoses. The healthcare system's lack of understanding of the disease means that patients often are forced to suffer through many different 'quick fixes' instead of getting the long-term care they need.

'They don't seem to understand (treatment of neuropathy) is an ongoing process - it's not an on-off switch,' Cooley said, adding that often times insurance companies will take a sign of slight improvement as an indication that the medication has worked in full and the patient doesn't need it anymore.

'That's just not how it works,' he said.

It's common for a patient's individual needs to get lost in the struggle with their health plan, agreed Donna Russell, an ex-nurse diagnosed with neuropathy.

'They'll try to fit you into pigeon-holes - those in this box gets this prescription,' Russell said. 'Sometimes the solution is not in the box. Sometimes the box is the problem. You have to look at the whole person.'

Martha Chandley, the founder of the Yolo Neuropathy Groups, stressed that America's current healthcare system puts a lot of pressure on the patient to fight a culture of ignorance about the disease.

'Sometimes I think there is growing awareness. But on the other hand, it's like, 'Oh god, we're still in the middle ages,'' said Chandley, noting the many different varieties and causes of neuropathy can make it difficult for doctors to diagnose and treat.

'I feel sorry for our doctors, but I also feel very sorry for patients. It's so hard when you're always discounted,' Chandley said, calling the need for information 'enormous.'

The Yolo group in Davis holds monthly meetings and has a monthly newsletter, and Chandley runs a neuropathy hotline out of her home for patients who have questions or need advice.

While Chandley and others like her keep support groups going at the local level, Spatafora continues to fight to bring national attention to the disease and to the struggle to obtain IVIG. With the Neuropathy Action Now Web site, http://neuropathyaction.org/, patients have at their fingertips information and resources - including the ability to file a complaint against their health plan when they are denied access to medication.

Eventually, Spatafora said, the group would like to establish a 24-hour hotline that patients can call if they have been denied treatment or have some other concern.

In June, the group will hold its second annual Neuropathy Action Awareness Day in San Francisco, all in an attempt to help neuropathy patients get the care they need.

'It's so hard when you're in pain and dealing with continuous letters from your health plan,' Spatafora said. 'But you can't give up. You have to maintain your will, your sense of humor and help others the best you can. Even if we each touch one person in a year, between all of us, that's a lot of people.'

Click here to comment on this story

Jason Fielder writes on December 21, 2007 at 22:10:15
Wow! Sounds like a remarkable young man. What an inspiration to all of us who suffer with a chronic disease but do not know how or what to do to fight the healthcare system. Accolades to Dominick and his foundation.

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Martha Chandley writes on December 21, 2007 at 20:18:09
Thanks so much, Emily and Linda! Great article with multiple angles covered. Bless you! Dominick's org is Neuropathy Awareness Foundation. We were at the Institute for Restorative Health/Physical Edge, the physical home of the Davis Support Group. We have groups in Woodland and West Sacramento as well in Yolo County, and 30 other groups associated with the Northern California Chapter of The Neuropathy Association. We're so grateful for the Davis Enterprise's gracious generous support of PNers. May all recieve wonderful Christmas blessings this season. Martha Chandley

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