Pediatric Epilepsy Research Consortium (PERC) joined Epilepsies Action Network (EAN) for an extraordinary day of advocacy on Capitol Hill to ask for increased funding for pediatric epilepsy research. PERC is a national collaboration of more than 75 pediatric epilepsy programs and over 350 pediatric epileptologists, pediatric neurosurgeons, pediatric neuropsychologists, and other pediatric epilepsy researchers to find better treatments for their patients. PERC’s advocacy team includes leaders from top pediatric epilepsy centers nationwide who each shared their unique perspective on the burden of the epilepsies on the pediatric population with their respective Senators. For most clinicians, this was their first time advocating on Capitol Hill but you would never know it from their eloquent and compelling remarks.
Current PERC President, Dr. Scott Perry, joined from Cook Children’s in Fort Worth, TX, and met with Texas Senator John Cornyn’s office. Cook Children’s is one of the largest pediatric health care systems in the southwest with over 1 million patient encounters each year. Dr. Perry described the care his center provides locally as well as throughout the state of Texas serving underserved communities.
Alyssa Ailion, a neuropsychologist, joined Boston Children’s Hospital/Harvard alongside Aaron Warren, a postdoctoral neuroscientist from Harvard Medical School and Brigham Women’s Hospital. Mark Slater, a leader on PERC’s Board who lives with epilepsy, joined the MA contingency. In their meetings with Senators Ed Markey and Elizabeth Warren of MA they talked about
How the lack of research funding was drawing top researchers and clinicians away from academia to industry. They explained this will significantly impact both advances in research as well as the care of patients.
They also described their novel areas of research. Alyssa is using functional MRI to map key areas in patients brains to facilitate surgery planning. Aaron discussed groundbreaking work being done on implantable neuromodulation devices to stop seizures. Mark shared very compelling remarks as someone who benefited from early epilepsy care. See Mark’s full testimony below.
Drs. John Schreiber, Director of the Epilepsy Genetics Program; Madison Berl, Director of Research in the Division of Pediatric Neuropsychology; and Gabrielle Sarlo, Postdoctoral Research Fellow joined from Children’s National in Washington DC alongside Dr. Nassim Zecavati, Director of Epilepsy at the Children’s Hospital of Richmond at VCU Health. They met with Senators Tim Kaine and Mark Warner of VA. During these meetings, they shared the challenges of treating children with epilepsy including a portion of the population whose lives are profoundly impacted and struggle with far more than seizures. They also talked about
the time and lives being lost because we do not have systems in place to allow them to share data across all treatment centers and learn from every patient.
Dr. Sonal Bhatia joined from Medical University of South Carolina. She met with Sen. Tim Scott of SC and talked about the dearth of practitioners in her state. She shared
that there is currently only one neurologist for every thousand pediatric epilepsy patients in South Carolina.
She also described the significant disparities for persons of color and those from disadvantaged communities.
Jane McCabe, PERC’s new Executive Director, joined from Colorado and described how PERC has 60 research projects ongoing mainly fueled by its members volunteering their time after hours. She described how increased funding for research would help advance these important projects with speed as well as create the infrastructure to accelerate work across centers and translate learnings more expeditiously to patients. Ellie McCabe , an EMT who has treated epilepsy patients and who will begin medical school in the fall also joined. She described the importance of prevention and timely intervention when seizures were occurring.
EAN leaders, caregivers and advocates Gabi Conecker, JayEtta Hecker and Ilene Miller also joined the meetings to share the caregiver perspective and praise the underfunded yet critical work of clinicians like those associated with PERC. The day was coordinated and facilitated by Katie Collins and Aditya Girish of G2G Government Relations.
Each of the Senate offices were moved by the stories and experiences shared.
Each office emphasized the importance of the epilepsy community showing up to educate and advocate with a shared voice.
In addition to advocating for research, PERC asked their Senators to join the new bipartisan Senate Epilepsy Caucus. [link to article] They also shared that the community was organizing to ask for a National Plan for the Epilepsies and we would be back with additional updates this summer.
Mark Slater’s comments …
I’m here today for pediatric epilepsy research. But I’m also here today because of pediatric epilepsy research.
I’m a board member of PERC and a person living with epilepsy.
I was diagnosed with epilepsy at age sixteen, some thirty years ago.
A few things I’m grateful for:
Today I have a wonderful wife, an amazing son, a lovely home, and a great community. I own two businesses - a healthcare marketing agency, specializing in strategy and communications; and a similar agency, created exclusively to give back to the epilepsy community.
I am acutely aware of just how fortunate I’ve been.
I’m here speaking to you today - because for me, the right pediatric epilepsy research had been completed at the right time. My neurologists had access to drugs that effectively stopped my seizures – and that I take to this day.
If I were one of the 30-40% of kids who have drug-resistant, or medically refractory epilepsy, my life would be very different. Children with refractory epilepsy, often have multiple seizures a day, may never get to drive, work a job, or live independently. They can face higher mortality rates, higher medical costs, and an array of developmental issues.
Many of those kids will never be able to tell you their stories.
And that is the primary reason why I’m here today.
On another note, supporting the epilepsies puts us on the right side of a historical wrong.
Some facts about epilepsy in America (cited in an NIH article):
Until 1956, 18 states provided for the sterilization, on eugenic grounds, of people with epilepsy.
Until 1956, people with epilepsy were forbidden to marry in 17 states. (The last state to repeal this law did so in 1980 – Thanks, Missouri)
Until the 1970’s, many public facilities, including restaurants, had the right to deny service to people with epilepsy.
Until 2005, prior to the Affordable Care Act, as many as 36% of people diagnosed with epilepsy were denied insurance.*
And this is just recent U.S. history.
People with epilepsy have been historically discriminated against, persecuted, and stigmatized – often by their own communities. It’s this same history of stigma that’s led to epilepsy being so profoundly underfunded today.
It’s time to right this wrong and get every child with epilepsy the care they deserve.
And that is why I ask you to support the Pediatric-Onset Epilepsies Network request for increased funding for the National Institute of Neurological Disorders and Stroke (NINDS) and National Center for Advancing Translational Sciences (NCATS).
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