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The Anatomy of A Successful Campaign — Why Neurology Can Celebrate the Passage of Epilepsy Legislation

Policy wonks can attest that when it comes to advocacy on Capitol Hill, you win some and you lose some. Such was the case for neurology in late September when Congress approved legislation to create up to six Epilepsy Centers of Excellence within the Veterans Affairs (VA) Health system, but rejected the STOP Stroke (Stroke Treatment and Ongoing Prevention) Act, which would have provided national resources for stroke education and patient care programs.

Both bills were key issues at this year's Neurology on the Hill event in Washington, DC, where over 100 Academy members signed up legislation cosponsors in Congress, said AAN Legislative Counsel Michael Amery. The AAN led the advocacy front for the Epilepsy Centers of Excellence bill, and was involved in the STOP Stroke Act coalition led by the American Heart Association (AHA)/American Stroke Association (ASA).


DR. JOHN BOOSS helped draft the epilepsy center legislation and gather cosponsors of the bill.

Why did one bill pass, and the other fail? Neurology Today asked several experts who were involved at the forefront — and behind the scenes — for insight.


The cost of the legislation is certainly a key factor, said John Booss, MD, a former director of the neurology service at the VA and Professor Emeritus in the departments of neurology and laboratory medicine at the Yale University School of Medicine. “The price tag for the epilepsy centers legislation was relatively small, one million dollars per center per year,” he said.

Dr. Booss noted that for decades, beginning in the 1970s, the VA was a world leader in epilepsy research, surgery, and training. But most of the highly specialized epilepsy care collapsed after a fiscal reorganization of the VA in the mid-1990s. Ever since, the VA has lacked a nationally organized program to care for the large population of veterans with epilepsy. This void, along with the anticipated increase in veterans with epilepsy associated with post-traumatic brain injury (TBI), prompted the Academy to make improved epilepsy care for veterans a legislative priority.

The AAN Professional Association (AANPA) political action committee, BrainPAC, also helped pave the way to access to the House leadership on veterans affairs — as well as to the Veterans' Service Organizations and the Epilepsy Foundation, said Dr. Booss. And the epilepsy bill's sponsor in the House, Representative Ed Perlmutter (D-CO), had a personal interest in the issue — his daughter has epilepsy. Dr. Booss, a member of the AANPA Legislative Affairs Committee, and Rep. Perlmutter worked closely and relentlessly to draft the legislation and gather cosponsors of the bill.


REP. ED PERLMUTTER: “As the father of a daughter with epilepsy, I understand and am committed to making sure our nation provides the critical medical care and research necessary to give these brave veterans the highest quality medical treatment by establishing Epilepsy Centers of Excellence within the VA health care system.”

Getting cosponsors and demonstrating bipartisan support is an important part of the advocacy process, Alec Garnett, legislative assistant to Rep. Perlmutter, told Neurology Today.

On the Senate side, Lily Jung, MD, vice chair of the Academy's Legislative Affairs Committee, worked closely with Senator Patty Murray (D-WA) to draft the Senate version of the bill, S. 2004. Sponsored by Senators Murray and Larry Craig (R-ID), S. 2004 passed the Senate Committee on Veterans Affairs and was then included as part of a larger veterans' health bill — the Veterans' Mental Health and Other Care Improvements Act of 2008 (S. 2162)—which ultimately passed unanimously.

Bill packaging can be useful for efficiency purposes in advancing legislation, Amery noted. The House and Senate Veterans' Affairs Committee staff had added the epilepsy bill to the larger one because each of the bills had wide support, he said.

Dr. Booss noted that the epilepsy bill was buoyed by greater public and Congressional awareness about TBI as the “signature wound” of the current conflicts in Iraq and Afghanistan.

Said Amery: “The impressive thing about the epilepsy bill is that it was completed in one congressional term; the effort began the summer of 2007 and passed in 2008.”

“This is a major accomplishment because our servicemen and servicewomen bravely fought for us — now it is time to fight for them and provide them with the best, highest quality medical care available,” Rep. Perlmutter said in an e-mail message to Neurology Today.

“As the father of a daughter with epilepsy, I understand and am committed to making sure our nation provides the critical medical care and research necessary to give these brave veterans the highest quality medical treatment by establishing Epilepsy Centers of Excellence within the VA health care system.”


The STOP Stroke Act also benefited from committed Congressional sponsors and testimonial support from representatives of lead advocacy organizations — including three dozen organizations in the STOP Stroke Coalition. Introduced as HR 477 by Representatives Lois Capps (D-CA) and Chip Pickering (R-MS) in 2007, the bill later passed the House and was brought to the Senate as S. 999 by Senators Thad Cochran (R-MS) and Edward M. Kennedy (D-MA).

By the rules of the Senate, a single senator can block a bill from coming up for a vote by the entire Senate. On Sep. 23, Senator Tom Coburn (R-OK) blocked the bill's passage, saying on the Senate floor, “Five different government agencies already have significant programs in that (stroke). This bill does not eliminate any of those, make improvements in those, just lays a layer of bureaucracy on top of that. With that, I object.”

Sen. Coburn ended negotiations on passing the bill, saying that the country's current financial constraints precluded passing any more public health bills this year, AHA/ASA Government Relations Manager Stephanie Mohl told Neurology Today.

Since STOP Stroke will help patients with stroke and those at risk, it's important that the bill's supporters not abandon their cause in the months ahead, said Larry B. Goldstein, MD, chairman of the AHA/ASA Advocacy Coordinating Committee and a member of the AAN Practice Committee. The advocacy team is looking forward to assessing their strategies and advancing federal policy to improve stroke care in the next Congressional term.