Epilepsy Foundation

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The Epilepsy Foundation (formerly Epilepsy Foundation of America), a national non-profit with affiliated organizations throughout the United States, has led the fight against epilepsy since 1968. The Foundation’s goals are to ensure that people with seizures are able to participate in all life experiences; and prevent, control and cure epilepsy through services, education, advocacy and research, so not another moment is lost to seizures. For additional information, please visit www.epilepsyfoundation.org.

Contents

[edit] About the Epilepsy Foundation

The Epilepsy Foundation is the national voluntary agency solely dedicated to the welfare of the more than 3 million people with epilepsy in the U.S. and their families. The organization works to ensure that people with seizures are able to participate in all life experiences; to improve how people with epilepsy are perceived, accepted and valued in society; and to promote research for a cure. In addition to programs conducted at the national level, epilepsy clients throughout the United States are served by more than 53 Epilepsy Foundation affiliates around the country.

Typical of the Foundation’s national programs are its Jeanne A. Carpenter Epilepsy Legal Defense Fund, Epilepsy Gene Discovery Project, H.O.P.E. (Helping Other People with Epilepsy) Mentoring Program, JobTech, Public Policy Institute, Elderly and Women’s Health Initiatives, Kids Speak Up! and Research Grants Program. Services commonly provided in local communities are information and referral, counseling, patient and family advocacy, school alert, community education, support groups and camps for children. Its Web site, www.epilepsyfoundation.org, offers the most comprehensive, medically approved consumer information about epilepsy and seizures on the Internet and is the trusted source for millions of people who seek reliable information about epilepsy.

The Epilepsy Foundation was established in 1967 as the Epilepsy Foundation of America, merging two largely regional epilepsy organizations. It began operating as the Epilepsy Foundation on January 1, 1998, formalizing the name most often used by the public in referring to the organization. It is a 501(c)(3) tax-exempt charitable organization existing under the laws of the State of Delaware, with a national office in metropolitan Washington, D.C.

The Foundation is governed by a Board of Directors comprising business leaders, health care professionals and client representatives, with the advice and counsel of a Professional Advisory Board whose more than 60 members are among the world’s leading epilepsy physicians and health experts. Its chief staff executive is its president and CEO, Eric R. Hargis. The Foundation’s professional advisory board is chaired by Bruce P. Hermann, PhD, Professor of Neurology, and Director of the Charles Mathews Laboratory of Neuropsychology, University of Wisconsin Medical School, an expert in the psychosocial consequences of epilepsy and its pharmacological and surgical treatment.

The Epilepsy Foundation is funded primarily through individual donations from the general public, and receives restricted grant support from the federal government, foundations and private industry. The organization is a participant in the Combined Federal Campaign and a member of the National Health Council and of the International Bureau for Epilepsy.

For more information visit www.epilepsyfoundation.org or contact the Foundation’s public information staff at 301-459-3700.

The Foundation has a comprehensive website highlighting the organization's programs, services, advocacy, and affiliate network. In addition, the Foundation publishes a magazine, EpilepsyUSA, six times a year.

The Foundation has a significant partnership with the Centers for Disease Control and Prevention. This partnership provides education to youth and seniors with epilepsy. While epilepsy's onset can happen at any time of life, it is most likely to occur in the young and the old.

Over the last few years, celebrities such as Amy Lee of the Grammy-winning rock band Evanescence, Greg Grunberg (star of NBC's Heroes), Pittsburgh Steelers star Alan Faneca, and Senator John McCain have worked with the Foundation to get the word out about the need to raise awareness of epilepsy and end the stigma and misunderstanding that is still prevalent in our society about people with seizures.

On Saturday, March 31st, 2007, on the National Mall in Washington, DC, the Foundation held their first "National Walk For Epilepsy", sponsored in part by Ortho-McNeil Neurologics. More than 5000 people participated and the event raised one million dollars to raise awareness and fund research.

[edit] About the Epilepsy Foundation: Names and Figures

Mission: The Epilepsy Foundation will ensure that people with seizures are able to participate in all life experiences; and will prevent, control and cure epilepsy through services, education, advocacy and research.

[edit] National Office

Non-profit status: Established in 1967 as the Epilepsy Foundation of America, a 501(c)3 tax exempt organization incorporated in the State of Delaware, the Foundation is the result of the merger of The Epilepsy Foundation and the Epilepsy Association of America.

Mailing address: 8301 Professional Place Landover, MD 20785-7223

Administration: Voice: 301-459-3700 Fax: 301-577-2684 E-mail: postmaster@efa.org

Consumer information services: Epilepsy Resource Center: Nationwide toll-free information line: 800-332-1000 Public Web site: www.epilepsyfoundation.org National Epilepsy Library : 800-332-4050 Jeanne A. Carpenter Epilepsy Legal Defense Fund: www.epilepsylegal.org

[edit] National Affiliate Network

Direct services in the community are provided by a national network of more than 50 independently incorporated Epilepsy Foundation affiliates serving 39 states, the District of Columbia and Puerto Rico.

[States without a local Epilepsy Foundation affiliate office are Alaska, Arkansas, Maine, Montana, Nevada, New Hampshire, New Mexico, Oklahoma, South Dakota, Utah, Wyoming (as of May 1, 2007).]

[edit] Combined Operations

Personnel: 75 full-time national office staff [as of March 1, 2008] Approximately 1,000 affiliate staff

Annual Budget: $79,794,495 [As of 6/30/06]

Revenue Sources: Individual and corporate contributions, government grants and contracts, special events, program/service fees, and wills and bequests.

Program and administrative expenses: Program and Research: 86 percent Management and Fundraising: 14 percent

Social Responsibility: The Epilepsy Foundation adheres to key standards for philanthropy including the administrative and fundraising standards of the Better Business Bureau Wise Giving Alliance and of the National Health Council.

[edit] Volunteer Leadership

National Board of Directors: Chair, Steven T. Sabatini, CPA, New York, NY Immediate Past Chair, Tony Coelho, Arlington, VA Treasurer, Joyce A. Bender, Pittsburgh, PA Secretary, Denise Pease, New York, NY President and CEO, Eric R. Hargis, Kensington, MD

National Professional Advisory Board: Chair, Bruce P. Hermann, Ph.D., Department of Neurology, University of Wisconsin Medical Center, Madison, WI Chair-Elect, William D. Turk, M.D., Division of Child Neurology, Nemours Children’s Clinic, Jacksonville, Fl. Secretary, Thomas R. Henry, M.D., associate professor of neurology, Emory University School of Medicine, Atlanta, GA

Memberships and affiliations: National Health Council, Combined Federal Campaign, International Bureau for Epilepsy, American Epilepsy Society, Consortium of Citizens with Disabilities, Research to Prevention, Coalition for Aging Research.

Special Initiatives: In addition to its ongoing programs and services for affected individuals and their families, the Epilepsy Foundation conducts a variety of special initiatives in association with the Centers for Disease Control and Prevention (CDC), Health Resources and Services Administration (HRSA), National Institutes for Neurological Disorders and Stroke (NINDS), American Epilepsy Society (AES), The Epilepsy Project, the International Bureau for Epilepsy (IBE), and other agencies and organizations. [Partial listing as of July 1, 2005.]

[edit] Jeanne A. Carpenter
 Epilepsy Legal Defense Fund

The Epilepsy Foundation's Jeanne A. Carpenter
 Epilepsy Legal Defense Fund is dedicated to advancing the rights of people with epilepsy by changing discriminatory practices, policies and laws and to ending epilepsy-related discrimination and injustice through education and increased access to legal services for individuals with epilepsy through a system of managed referrals and legal support to a nationwide network of attorneys committed to this cause. Additionally, the Epilepsy Foundation is a vigorous advocate for people with epilepsy. The Foundation has been active in Congress, the executive branch, and the courts, focusing attention on the needs of those with epilepsy. Priorities for the Foundation include: the availability of affordable quality health care, the search for the cure, and the protection of civil rights for people with epilepsy.

[edit] Kids Speak Up!

[edit] What is Kids Speak Up!

Children with epilepsy and their families converge annually on Capitol Hill to take part in the Epilepsy Foundation’s Kids Speak Up! campaign. Through this unique program, young people with epilepsy learn the importance of speaking up about their rights, they learn how to speak up to their elected representatives, and they receive the chance to actually meet with their representatives on behalf of the more than 3 million Americans—including 350,000 children—who have epilepsy. During Kids Speak Up! participants are available for interviews with journalists in order to discuss the program and their battles with epilepsy. Kids Speak Up! takes place in conjunction with the Epilepsy Foundation’s annual Public Policy Institute.

[edit] What is epilepsy?

Epilepsy is a generic term used to define a family of seizure disorders. A person with recurring seizures is said to have epilepsy. Epilepsy is the most common neurological condition in children, affecting 350,000 people under the age of 17 in the U.S., and the third most common in adults after Alzheimer’s and stroke. Despite modern therapy, about one million people continue to experience seizures or significant side effects from treatment.

[edit] What is the purpose of the program?

Kids Speak Up! brings young people with epilepsy between the ages of 7 and 16 to personally petition congressional leaders for aid in assuring better access to care, improved public education and greater research toward a cure for epilepsy. Like all Foundation programs, Kids Speak Up! is designed to ensure that people with seizures are able to participate in all life experiences; and to prevent, control and cure epilepsy through research, education, advocacy and services.

[edit] How many children will be selected to participate?

Funding is available for up to 40 children, plus one parent for each child.

[edit] How are children selected to come to Washington, D.C?

Nearly 60 affiliates across the country nominate local children and their families for the program. The selection committee then considers the geographic location (there are certain congressional districts and members of Congress that are key to our legislative agenda), the family’s experience in advocacy at the state and federal level, the family’s involvement in community outreach, if the child has had previous experience in representing the epilepsy cause and the overall diversity of program participants to make their decisions.

[edit] Controversy

According to the Wall Street Journal, the Foundation, with its local affiliates, has been lobbying for state laws in 25 states that would prevent pharmacists from substituting generic epilepsy drugs for brand-name drugs unless the pharmacist had written consent of the physician or patient. The pharmaceutical industry has also been lobbying state legislatures for the change, and working with the Foundation.

The pharmaceutical industry spent $8.8 million in state campaign contributions in 2006. In its annual report, the Epilepsy Foundation reported that it got $500,000 to $999,999 from GlaxoSmithKline, and $100,000 to $499,999 from each of Abbot Laboratories and Johnson & Johnson. Representatives of four pharmaceutical companies sit on the Epilepsy Foundation's board, as does Billy Tauzin, head of PhRMA, which gave $25,000 to $49,999. The Foundation denied that pharmaceutical funding had anything to do with its support of the laws.

Generic drug substitution is significant, according to the Journal, because 4 major branded drugs, with $5 billion revenue last year, will be going off-patent by 2010. (The 5 best-selling drugs are Topamax, Lamictal, Lyrica, Keppra and Depakote.) Pharmacists can now substitute generics, because every generic drug, in order to be approved, has to demonstrate that it is equivalent to the branded drug.

The Epilepsy Foundation received anecdotal reports of patients experiencing seizures and side effects after switching drugs, and tried to convince the FDA in 1999 that there was a problem, but the FDA decided there was no evidence. In 2006, the Foundation convened a committee of medical experts, and its own experts also found no evidence. Nonetheless, the Foundation recommended that doctors be required to give permission to switch to generics.[1][2]

: The Los Angeles Times, however, more closely explored the issue in a series of articles)[3]. In : "FDA standards for generics are questioned,")[4] it is pointed out that generic and brand name medications usually aren't the same and there are, according to many experts, a number of problems in the FDA's process of approving generic medications--for instance, the bioequivalence/therapeutic indices are not realistically tested. A medication might be tested on a healthy young adult when it will never be used on a healthy young adult. Furthermore, the FDA generally allows an 80-125% difference in bioequivalence in generic medications, meaning that the generic can, with all of its different fillers and varying ingredients, fall within a fairly large bioequivalence arena. The article goes on to say that medical and pharmacology specialists say this range is too broad for medicines that have a narrow therapeutic index (NTI), which is to say medicines that must be carefully calibrated for a particular individual.

Another article in the L.A. Times series, : "For some, generics may be more costly," )[5] discusses how switching patients to generic meds might, in the long run, be more costly than keeping them on the more tightly and rigidly controlled brand name medications.

Practicing physicians absorb the cost and liability of prescribing therapeutic substitutes at the whim . . . of the health plan providers, whose sole motivation is to wring out every cent of cost savings possible for the benefit -- i.e., the profit -- of the plan... I have never been harassed to the point where I currently am from insurance companies. . . . This is the most obnoxious racket that I've ever been involved in.

— Dr. Dean J. Kereiakes, chief executive and research director of the Ohio Heart & Vascular Center in Cincinnati, Los Angeles Times, March 17, 2008

In the opening story to the series, the L.A. Times points out that the American Epilepsy Society would like a study to prove one way or the other whether or not generics and brand-name medicines are the same[6].

As stated on the Epilepsy Foundation's own Web site: The Foundation maintains that the individual and physician should be notified and give their consent before a switch in medications is made, whether it involves generic substitution for brand name products, or generic to generic substitutions. This is a long-standing position of the Foundation which has been communicated to the Food and Drug Administration (FDA). The Foundation continues to advocate for policy changes regarding this issue.)

For more information, please see: AMERICAN ACADEMY OF NEUROLOGY's POSITION STATEMENT ON THE COVERAGE OF ANTICONVULSANT DRUGS FOR THE TREATMENT OF EPILEPSY, NOVEMBER 2006)

[edit] References

  1. ^ Pill push: Industry fights switch to generics for epilepsy, big drug makers help patient groups lobby; more attention to states, Sarah Rubenstein, Wall Street Journal, July 13, 2007. Free full text
  2. ^ Big Pharma States Its Case by Joe Mantone, Wall Street Journal Health Blog, July 13, 2007, 6:53 am
  3. ^ Healy, M: "Generic drugs: Just as good?", Los Angeles Times, March 17, 2008
  4. ^ Healy, M: "FDA standards for generics are questioned", Los Angeles Times, March 17, 2008
  5. ^ Healy, M: "FDA For some, generics may be more costly", Los Angeles Times, March 17, 2008
  6. ^ Healy, M: "Generic drugs: Just as good?", Los Angeles Times, March 17, 2008

[edit] External links