Epilepsy Foundation
Urge Your Senator to Support Funding for Critical Epilepsy Programs

The Senate Labor, Health and Human Services, Education Subcommittee of Appropriations is scheduled to vote on Epilepsy Appropriations the week of July 11th.

The Epilepsy Foundation needs your help in writing Senators to urge their support of funding for critical epilepsy programs.

Sample Letter for Campaign

Subject: Support Funding for Critical Epilepsy Programs

Dear [ Decision Maker ] ,

I am writing to urge your support for increased funding for critical epilepsy related programs.

As you know, the House passed its version of the Labor, Health and Human Services and Education Appropriations bill on June 24th, 2005.

This legislation includes funding for epilepsy programs at the Centers for Disease Control and Prevention (CDC), the Health Resources and Services Administration (HRSA), and the National Institutes of Health (NIH).

We were especially pleased that House appropriators provided a $440,000 increase for the CDC's epilepsy program. This funding is necessary to begin implementation of the significant new recommendations from Living Well with Epilepsy II. Those recommendations include improvements in the areas of surveillance, public education, access to treatment, systems and models of care, and other issues of importance to people with epilepsy.

More than 2.7 million Americans have epilepsy, a neurological condition that makes people susceptible to seizures. If we are to improve the health of individuals with epilepsy, it is critical that we continue to support the CDC, HRSA, and NIH epilepsy efforts.

It is our understanding that the Senate is scheduled to mark up its version of this legislation following the July 4th recess. We hope that you will show your support for epilepsy related programs by, at a minimum, matching the funding levels provided by the House of Representatives.

Thank you for your support of people with epilepsy.

Signed by:

Campaign Launched:
July 06, 2005


Background Information

Information as of 29 June 2005

The Epilepsy Foundation's volunteer advocates continue to be a powerful force on Capitol Hill. Thanks to the hard work of advocates who met with their Members of Congress during the Public Policy Institute, the Foundation was able to circulate "sign on" letters that received 70 signatures in the House of Representatives, and 23 signatures in the Senate. These letters were then sent to the Chairmen and Ranking Members of the Appropriations Committee in the House and Senate, and serve as a powerful reminder that epilepsy programs enjoy broad, bipartisan support in both chambers.

House Proposed Funding Levels for FY 2006 Epilepsy Appropriations

The House of Representatives Labor, Health and Human Services and Education Subcommittee marked up its version of the FY 2006 appropriations bill at the end of June. This legislation includes funding for several epilepsy related programs at the Centers for Disease Control and Prevention (CDC), the Health Resources and Services Administration (HRSA), and the National Institutes of Health (NIH). It is important to note that overall funding for CDC public health programs was cut for the first time since 1973. The Coordinating Center for Health Promotion, which houses the epilepsy program, was cut by $42 million.

Against this backdrop, the Epilepsy Foundation is pleased that there was a substantial increase of $440,000 proposed on the House side for the CDC's epilepsy program. The total House proposed funding level for FY 2006 is $8,000,000 for epilepsy activities. We are also pleased that the Committee saw fit to include requested language for both the HRSA and NINDS sections. The FY 2006 recommendation for HRSA was again set at $3,000,000 to continue epilepsy demonstration programs, and the NINDS recommendations included epilepsy specific language.

Specifically, the House report language reads:

CDC:

"Epilepsy: The Committee provides $8,000,000 for Epilepsy activities, which is $440,000 above fiscal year 2005. The Committee supports the CDC's epilepsy program and applauds the collaboration the Agency developed with the Epilepsy Foundation in crafting the recommendations of Living Well with Epilepsy II. The Committee encourages CDC to maintain support for ongoing epilepsy public health programs as well to begin implementation of the new recommendations from Living Well With Epilepsy II as funds become available. It is also expected that CDC be prepared to report on the current results on implementation of those recommendations and future plans, including those involving coordination with other agencies, during the fiscal year 2007 budget hearings."

HRSA:

The Committee has also provided $3,000,000 within the SPRANS set-aside to continue epilepsy demonstration programs. These programs are designed to improve access to health and other services regarding seizures and to encourage early detection and treatment in children and others residing in medically underserved and rural areas. The Committee is pleased that HRSA has partnered with a national voluntary epilepsy agency to carry out these activities.

Of the amount provided, the Committee recommends that up to thirty percent be used to continue to fund the development and testing of a national public health awareness campaign to increase seizure recognition and improve access to care among minorities and underserved populations."

NINDS:

"Epilepsy remains a major, unsolved public health problem affecting the lives of millions of Americans and their families. The Committee seeks intensified efforts by the Institute to produce breakthroughs in the prevention, treatment and eventual cure of epilepsy. The Committee applauds the development of benchmarks for epilepsy research resulting from the Curing Epilepsy: Focus on the Future conference held in 2000 and encourages NINDS to address important research issues raised at the Living Well with Epilepsy II conference held in 2003. The committee encourages NINDS to continue to allocate resources to the anti-epileptic drug development program, and to report the Committee in next year’s hearing on its activities to further these important areas of research."

Markup in the Senate

Unlike previous years, the Senate environment is even more challenging than in the House. The Senate Appropriations subcommittees received its allocations at the end of June, and the Labor, Health and Human Services and Education subcommittee received $141.3 billion, the same as the President's budget. The House allocation was considerably higher ($142.5 billion).

The Senate Labor, Health and Human Services and Education subcommittee marked up its version of the bill during the week of July 11th, 2005. The Foundation and its advocates have been following up with key Senate appropriators staff in the next few weeks to ensure that epilepsy programs receive the greatest possible increases.