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Letter to Tom Harkin and Arlen Specter, Chairman and Ranking Member of the Subcommittee on Labor, Health and Human Services, Education and Related Agencies, Re: Greater Investment in Epilepsy Research and Treatment

Letter

By:
Date:
Location: Washington, DC

Senators Clinton and Schumer Call for Greater Investment in Epilepsy Research and Treatment

Senators Hillary Rodham Clinton (D-NY) and Charles Schumer (D-NY), joined by a bipartisan group of senators, are urging the Senate Subcommittee on Labor, Health and Human Services, Education and Related Agencies to support greater investment in groundbreaking epilepsy research and treatment led by the Centers for Disease Control and Prevention (CDC), the Health Resources and Services Administration (HRSA) and the National Institutes of Health (NIH). In a letter to Subcommittee Chairman Tom Harkin (D-IA) and Ranking Member Arlen Specter (R-PA), Senators Clinton and Schumer requested $13 million in program funding, and a 6.6 percent increase in research funding through the National Institutes of Health.

"We have made tremendous strides in understanding epilepsy, helping those who suffer from it, and expanding access to treatment. It is crucial that we continue to invest in cutting edge epilepsy research and treatment programs so that we can make further progress for the millions of Americans with this condition and those expected to be diagnosed with epilepsy in the future, including a growing number of seniors as well as soldiers returning from Iraq and Afghanistan," said Senator Clinton.

"Not that long ago, epilepsy was a devastating diagnosis that trapped sufferers in fear. Now, with intensive research, many with epilepsy are able to control their condition, but too many still suffer persistent seizures that limit their lives. With more and more Americans suffering from this condition, it is imperative that we continue to fund epilepsy research until we beat this debilitating illness," said Senator Schumer.

Approximately three million Americans have epilepsy, a neurological condition that makes people susceptible to seizures, and most commonly affects children and older Americans. In addition, brain injury can lead to epilepsy, and is more common with the severe or penetrating head injuries such as those sustained in combat situations. With an increasing number of soldiers returning from Iraq and Afghanistan suffering from traumatic brain injury, an increase in the number of epilepsy cases is expected. While advances in medical treatment have allowed some individuals with epilepsy to control their illness, more than 40 percent of people with epilepsy still have persistent seizures.

CDC, HRSA and NIH have undertaken a range of activities to improve the lives of individuals with epilepsy and their families. The CDC's epilepsy program supports activities to improve quality of care and quality of life for individuals with epilepsy, including school-aged children and seniors. HRSA supports demonstration projects that have made tremendous progress in improving access to comprehensive, coordinated health care and related services for children with epilepsy in medically underserved areas. Lastly, NIH has engaged in research that has dramatically improved our understanding of epilepsy, but requires additional funding to carry out trials and longitudinal studies to test findings and further develop new advances in epilepsy treatments.

Full text of the Senator's letter follows.

April 3, 2008

The Honorable Tom Harkin
Chairman
Subcommittee on Labor, Health and
Human Services, Education and
Related Agencies
Committee on Appropriations
United States Senate
D-184
Washington, D.C. 20510

The Honorable Arlen Specter
Ranking Member
Subcommittee on Labor, Health and
Human Services, Education and
Related Agencies
Committee on Appropriations
United States Senate
D-184
Washington, D.C. 20510

On behalf of the almost 3 million Americans with epilepsy, we urge you to increase funding for critical epilepsy activities at the Centers for Disease Control and Prevention (CDC), the Health Resources and Services Administration (HRSA) and the National Institutes of Neurological Disorders and Stroke (NINDS).

Ten years ago, the CDC sponsored the first Living Well with Epilepsy conference. This event provided a comprehensive overview of the state of epilepsy management, assessed the many unmet program, treatment, management, and advocacy needs of individuals with epilepsy and their families, and developed a series of recommendations to advance the public health agenda. In the decade since, CDC, HRSA, NIH, and other agencies and organizations have undertaken a range of activities to improve the lives of individuals with epilepsy and their families, including efforts to expand epilepsy research; improve access to comprehensive, coordinated health care services; train teachers, health care providers, first responders, and the public in the recognition and treatment of seizures; and ensure that people with epilepsy are accepted and valued in society.

Specifically, the CDC's epilepsy program has supported many activities to improve quality of care and quality of life for individuals with epilepsy. Through its partnerships with non-profit organizations such as the Epilepsy Foundation, CDC supports training programs that help first responders to recognize and treat epilepsy. Additionally, training programs have helped school nurses and educators to address the needs of children with epilepsy in the classroom. CDC funds also support activities to address the public health needs of seniors with epilepsy -- the fastest growing age-group of people with epilepsy. We urge you to increase funding for this important program to $9 million for FY 2009.

HRSA supports several demonstration projects that have made tremendous progress in improving access to comprehensive, coordinated health care and related services for children and youth with epilepsy in medically underserved areas. However, additional funding is necessary to develop and test a national public health awareness campaign to increase seizure recognition and improve access to care among minorities and underserved populations. We urge you to provide $4 million for this important effort.

Finally, research at NIH has dramatically improved our understanding of epilepsy. Last year, the National Institutes of Neurological Disorders and Stroke hosted the second conference on curing epilepsy. Since then, NIH has been working to develop plans and goals based on the latest research developments as highlighted at the conference. Clinician researchers are needed to carry out trials and longitudinal studies to test findings and further develop exciting research directions in epilepsy. We support a 6.6 percent increase to the NIH as a whole and the NINDS specifically to support these important activities.

We appreciate your commitment to improving the lives of people with epilepsy and urge you to increase funding for these critical programs.


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