Phil Gattone
President and CEO, Epilepsy Foundation

Warren Lammert
Chair of the Board of Directors, Epilepsy Foundation

The Epilepsy Foundation is committed to advocating on behalf of the nearly 3 million people living with epilepsy and their families, and supporting the health providers and scientists that are improving their quality of life. Our state and federal advocacy efforts advance public policies that support epilepsy research and improve the quality of life for people with epilepsy.

Our Public Policy and Advocacy team works tirelessly to advance public policies that improve the lives of people living with epilepsy. We’ve long recognized that the voices of people living with epilepsy and their families need to be heard directly by legislators. This is why our cornerstone advocacy event has been our public policy conference, now in its 23rd year.

The Public Policy Institute (PPI) started over 22 years ago. The American Epilepsy Society (AES) was an original sponsor and continues to champion this event, with the AES President traditionally serving in the role of speaking with our program participants over dinner to discuss the latest in epilepsy research. We are very proud of this public policy partnership with AES that includes joint meetings of our advocacy leadership committees. PPI began with 35 attendees and has grown to over 200! Our goal has remained to provide a high quality advocacy training to Epilepsy Foundation affiliates staff and volunteers, teens and parents so that they may in turn educate Members of Congress about epilepsy, the need for epilepsy research, and increase public awareness of epilepsy and its consequences.

This year the Epilepsy Foundation held its annual Public Policy Institute and Teens Speak Up! (TSU) conference from March 23rd to 25th in Washington, DC. Attendees came from 30 states and 35 Epilepsy Foundation affiliates, bringing together more than 175 teens, parents, affiliates, and volunteers for a day and a half of advocacy training that culminated with Hill Day and visits to the offices of their Members of Congress on March 25th. These advocates flooded Capitol Hill in purple scarves to share their personal stories in support of the Epilepsy Foundation’s legislative goals, resulting in nearly 200 Congressional visits.

The Public Policy Agenda: What do PPI and TSU participants advocate for? The Epilepsy Foundation’s Hill Day supports epilepsy research and program funding at a time when Congress begins work on the federal budget for the next fiscal year. A big focus for the Hill Day is on funding for epilepsy research at the National Institutes of Health (NIH). This year, we advocated for legislative support for $160 million in funding for epilepsy research at NIH and $32 billion in overall funding at NIH. Even accounting for cuts due to “sequestration” (across the board, mandatory budget cuts enforced by Congressional appropriations), NIH funding for epilepsy research is down at least 10% since 2012, and less than ½ of 1% of NIH funding supports epilepsy research. The epilepsy community must stand behind NIH and Congressional supporters to ensure that adequate research funding and support for critical programs, which include the Interagency Collaborative to Advance Research in Epilepsy (iCARE); the new Anticonvulsant Screening Program (ASP) for developing new compounds to better address the needs of the patients for whom current therapies are not effective; the National Institute of Neurological Disorders & Stroke (NINDS) Centers without Walls program; the Translational Research Program for the Epilepsies, the Exceptional, Unconventional Research Enabling Knowledge Acceleration (EUREKA) grants; and the Brain Research through Advancing Innovative Neurotechnologies (BRAIN) Initiative.

Conference attendees also strongly advocated for epilepsy programs at the Centers for Disease Control & Prevention (CDC) during this important time for the federal budget. The Epilepsy Foundation has long advocated for epilepsy to be a priority for the federal public health system, and the CDC epilepsy programs are building safer communities, by combating stigma associated with epilepsy, educating community leaders, and building awareness that benefits everyone with epilepsy and other chronic health conditions. Stigma surrounding epilepsy continues to fuel discrimination and isolates people with epilepsy from the mainstream of life. Among older children and adults, epilepsy remains a formidable barrier to educational opportunities, employment, and personal fulfillment. There is a continuing need to better understand the public health impact of the condition, promote initiatives that encourage self management, and improve mental health. Meeting these needs will help create an environment in which people will feel free to disclose their epilepsy or seizures, without fear of discrimination or reprisal.

Innovation was a focal point of our Congressional outreach which featured two legislative requests to Congress. The first was a proposed bill focusing on the Drug Enforcement Administration (DEA) and its role in scheduling of new epilepsy treatments. The second was the Modernizing Our Drug and Diagnostics Evaluation and Regulatory Network Act,(MODDERN Cures Act, H.R. 3116), a broadly supported patient initiative that would facilitate the development of new treatments by opening up expanded patent pathways for drugs and molecules that have not been developed but offer promise for conditions with unmet medical needs.

We did not have to wait long for Congressional action on the DEA proposed legislation we advocated for on our Hill day. The following day Representatives Joseph Pitts (PA) and Frank Pallone (NJ) introduced the Improving Regulatory Transparency for New Medical Therapies Act (H.R. 4299), a bipartisan bill would modify the Controlled Substances Act to require that new molecular entities for which Food and Drug Administration (FDA) recommends scheduling are, upon FDA approval, scheduled by DEA within 45 days. The week following, Epilepsy Foundation Professional Advisory Board Chair Dr. Nathan Fountain provided testimony to the House Energy Commerce Health Subcommittee in support of H.R. 4299. The bill was favorably reported out of the committee without changes and our advocacy efforts continue as we push for the House passage.

The Epilepsy Foundation has been concerned that due to lengthy delays in the DEA scheduling process, newly approved treatments for epilepsy and other central nervous system conditions are not being made available to patients in a timely, transparent manner and the DEA review lacks a clear patient-centered timeline. For patients who are in need of new treatment options, waiting 6 to 12 months or longer for a decision that does not change the FDA scheduling recommendation seems unexplainable.

PPI and TSU brings together teens living with epilepsy, their parents, and affiliate staff and volunteers, to learn about the advocacy process and share their story, in support of the policy priorities for the Epilepsy Foundation.

For teens with epilepsy, we featured 5 Teens Speak Up (TSU) Ambassadors, older teens or returning teen advocates who provided leadership and peer training at the program. A highlight of this training is encouraging year long advocacy by our teens. As part of their Year of Service, all of the teens made a commitment to work on four separate initiatives throughout the year, including meeting with state representatives and other leaders in their communities. Everyone can join in this commitment by visiting the Epilepsy Foundation website at: http://www.epilepsy.com/make-difference/advocacy/advocates-year-service

The day and half conference educates all attendees about public policy priorities for the epilepsy community and prepares teens, parents and affiliate representatives to share their story with with Members of Congress and their staff.The conference also offers families and affiliate represenratives opportunities to get to know each other.

We kicked off the Hill Day with the presentation of the Sara Stubblefield Advocacy Award, which recognizes an individual who is a leader in advocating and making a difference in the lives of the millions of Americans living with epilepsy. This award commemorates Sara Stubblefield, who passed away unexpectedly while participating in the Public Policy Institute. This year the award was given to Liza Gundell, deputy director at the Epilepsy Foundation of New Jersey, for her work and dedication to epilepsy advocacy and programs.

After the presentation, teens, parents and affiliate representatives headed for Capitol Hill to speak up and speak out for the epilepsy community. Participants went on nearly 200 Hill visits and shared their story about living with epilepsy, urged Congress to increase funding for epilepsy programs and research, and voiced their support for legislation that would accelerate innovations in epilepsy. Families partner with a representative from the epilepsy community (e.g., physician, affiliate member) and they visit their Members of Congress.

Conference training was led by Epilepsy Foundation leadership, former congressional staff, partner patient advocacy organizations, and epilepsy advocates. We were pleased to feature a research dinner with the American Epilepsy Society (AES) for our parent and affiliate advocates. Attendees heard from AES President, Dr. Elson So, about new treatments and emerging issues in epilepsy care. A highlight for the AES dinner was a question and answer session with AES board members. Almost 30 physicians joined us for dinner and provided a welcoming and knowledge-filled face to epilepsy specialty care.

We are grateful to everyone who came to Washington, DC to participate and make this another successful conference, and look forward to building on the advocacy lessons learned at PPI/TSU, as participants continue to speak up and speak out for themselves and the epilepsy community. As federal resources continue to narrow and competition for those resources intensifies, we need to make sure that the voice of the epilepsy community is heard. We must speak up for access to quality care for patients and families and innovative research and programs that can improve the lives of people living with epilepsy and their families. We invite patients, families, and professionals interested in advocacy to join us as we advocate for the epilepsy community by visiting the Epilepsy Foundation at: http://www.epilepsy.com/make-difference/advocacy

In Epilepsy & Behavior; October 2014; 39: 10-11.

Reprinted with permission from Epilepsy & Behavior, Elsevier for Editorials.