Health Policy for Hydrocephalus

Even as we achieve strides in raising awareness and increasing research funding, too many Americans with hydrocephalus still live with unaffordable, inaccessible or insufficient health insurance coverage. The hydrocephalus community is not alone. We share this struggle with everyone who has a chronic medical condition. Raising our voices together with the 100 million people in the US who live with chronic disease or disability is the best way to change this reality for the better. Thankfully, the National Health Council recognizes this issue and is uniting us to inspire change.

Under the leadership of the National Health Council, the heads of 48 of the nation’s leading patient advocacy groups agreed on a powerful statement and a plan to call the presidential candidates to task on health care policy. At a September 2007 press conference in Nashua, New Hampshire, the first step of that plan was realized as the following joint statement was released:

“The lack of effective health care coverage is one of the most important issues facing our nation. Nearly 50 million Americans have no coverage at all. Many more have coverage that does not provide for their basic health and long-term care needs. The problem is especially acute for Americans with a chronic disease or disability – the people we represent. We urge you to propose specific solutions that guarantee effective and affordable health and long-term care coverage for all Americans.”

This effort represents the first time the nation’s leading patient advocacy groups have joined forces in support of improving health coverage for all Americans. “We’re facing a grave crisis that demands action,” said National Health Council Chair, Jim Williams who is also CEO of Easter Seals. “Many are at risk, but none more so than the 100 million Americans we represent. We hope to not only educate candidates, but compel them to act on this vital issue.”

The National Health Council, founded in 1920, is leading the effort to educate presidential candidates and the media about the importance of ensuring that all Americans have coverage. We are proud to join with the American Cancer Society, the American Diabetes Association, the Alzheimer’s Association, The Spina Bifida Association, Easter Seals, The American Heart Association and other prominent and influential organizations across the nation in this important effort.

You can support this effort by sending a letter to the editor of your local newspaper in response to any article or story relating to health care and the 2008 Presidential campaign explaining how this problem affects you and your family. Please also send a copy of your letter to the presidential candidates and ask them what they plan to do about this. For a sample letter and a list of the presidential candidates, please visit the National Health Council website.

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