Neuropathy: Neuropathy Advocacy

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Dennis 2010

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National Neuropathy Week 2010: Focus on Advocacy

As your advocate, we continue to represent you—and the over 20 million Americans impacted by neuropathy—in D.C. by attending NIH roundtables, advocating for legislation to enable our autoimmune neuropathy community to have access to IVIG treatments in all sites of care, and representing the community during health reform discussions.

From what health reform means to you—and the neuropathy community at large—to our call to action for every person who has or knows someone who suffers with neuropathy, the following articles provide a snapshot of the challenges our community faces and how we all can step up—together—to build a better future for the millions afflicted with this debilitating neurological disease.

Health Reform: What It Means for Our Community
On March 23, 2010, President Obama signed comprehensive health reform, “The Patient Protection and Affordable Care Act,” into law. While this reform is a historic attempt to improve the cost, quality, and fairness of American health care, the specific impact on our neuropathy is still to be determined. Two very important issues for our community were not included, and these could impact us negatively in the long run. The final legislation did not include a permanent repeal of the Medicare sustainable growth rate formula (SGR), and neurology was not included in the primary care bonus section, a key element The Neuropathy Association had been advocating for along with the American Academy of Neurology (AAN) and other patient groups. Read more...

The Neuropathy Association’s Call to Action: Let’s Be 20 Million Voices Strong and Silent No More
For National Neuropathy Week, we need to point out that peripheral neuropathy is being swept away by a sea of epidemics. We currently have an epidemic of 400,000 people in the U.S. with multiple sclerosis (MS). Over 5 million Americans are living with Alzheimer's. It was recently announced that we have now reached the epidemic proportion of 2.1 million people being treated every year for non-melanoma skin cancer...and the overall cancer epidemic continues to grow...according to the International Agency on Center in 2000 about 11 million new cases of cancer were diagnosed worldwide on top of 25 million already living with cancer. We are also in the midst of a U.S. diabetes epidemic of 23 million (and 50-60% of these patients will develop diabetic neuropathy). Read more...

Everyone who has or cares about someone with neuropathy has got to be counted as someone who cares about the issues the neuropathy community faces. You can become a neuropathy advocate by sharing with others your experiences with neuropathy, participating in our monthly polls, taking part in our letter-writing and advocacy campaigns when we ask you to, requesting neuropathy proclamations from your local government representative, and sharing with friends and family—in person and online—that neuropathy is important to you. By uniting as a single voice through the Association, we can act together to implement the critical changes needed for the millions whose lives have been impacted by neuropathy.