Today as we celebrate International Epilepsy Day (#EpilepsyDay), epilepsies stakeholders from across the Unites States joined forces sending a letter to President Biden urging more funding for the epilepsies. A similar letter was sent in Fall 2022. The letter and its signers are below.
February 12, 2024
President Joseph R. Biden
The White House
1600 Pennsylvania Avenue, NW
Washington, D.C. 20500
Dear President Biden:
As a community of clinicians, researchers, and thought leaders collaborating on many fronts
alongside people with the epilepsies, family members, caregivers, and advocates, to improve
epilepsy healthcare and outcomes, we respectfully request increased federal investment for
research into the epilepsies, as part of your FY 2025 budget proposal. Collectively, the epilepsies
are among the most common conditions affecting the brain and range in impact from profoundly
debilitating to manageable with therapy. More significant government investment is needed to
advance understanding of these various epilepsies, develop more effective and targeted therapies,
and establish new, transformative models of patient care.
One in 26 people will develop a form of epilepsy in their lifetime1 and 3.4 million Americans
currently live with active epilepsy, including 470,000 children and teenagers.2 The epilepsies can
be deadly, with one out of every 1,000 people dying from sudden unexpected death in epilepsy
(SUDEP).3 Delayed recognition of seizures and inadequate or delayed treatment increases a
person’s risk of subsequent seizures, brain damage, disability, and death. Moreover, the epilepsies
that lack a definitive biological cause are some of the most burdensome neurological disorders in
the US, based on a recent survey.4
Epilepsy is a spectrum disease that affects infants, children, young people, working adults, seniors,
wounded warfighters, veterans, and persons impacted by traumatic brain injury. At the
fundamental level, epilepsies are disorders of the brain characterized by abnormal nerve cell
signaling. This causes seizures, which are driven by uncontrolled bursts of electrical activity that
change sensations, behaviors, awareness, and muscle movements. The epilepsies consist of many
diagnoses, including an ever-growing number of rare epilepsies. Due to this vast spectrum, there
are many different types of seizures and varying levels of seizure control. Furthermore, the health
challenges of the epilepsies extend far beyond seizures to include cognitive, behavioral, and
psychiatric mood disorders, as well as mobility, gastrointestinal, and respiratory issues.5
We deeply appreciate your administration’s efforts to prioritize access to innovation and eliminate
disparate health outcomes across disease states, especially for epilepsies and other neurological
disorders. This is exemplified by the U.S. Department of Health and Human Services’ statements
of support for the World Health Organization (WHO) Intersectoral Global Action Plan (IGAP)
that was unanimously approved in May 2022. IGAP envisions a future where “brain health is
valued and protected across the life course; neurological disorders are prevented, diagnosed and
treated; premature mortality and morbidity are avoided; and people affected by neurological
disorders have equal rights, opportunities, respect, and autonomy.”6 Your administration’s
commitment to encouraging the development of breakthrough areas of medicine and
transformative new therapies is commendable and can position the U.S. to realize the vision
outlined in the IGAP. By investing strategically in epilepsy research, new therapies, and data
surveillance through agencies such as ARPA-H, AHRQ, NIH, CDC, CMS, HRSA, FDA, DoD,
and the VA, we can drive forward innovative approaches backed by robust science to elevate the
level of healthcare for people with the epilepsies. Collaborative efforts across government will also
be key to addressing the challenges related to increasing data tracking and translating data into
solutions to help people with the epilepsies and save lives.
Recent research developments have pushed the envelope on multiple fronts. There is now a more
robust understanding of the genetic underpinnings of a growing number of epilepsies. The use of
rapid genome sequencing to diagnose genetic epilepsies has enabled precision medicine in the
clinical care of infants with new-onset epilepsy, with implications for the wider population.7,8
Other notable breakthroughs in the last year include the development of a novel seizure mitigation
therapy using stem cells that has progressed to clinical testing in people with epilepsy9,10 and the
creation of an electronic medical record model to predict seizures and minimize invasive
procedures.11
Despite these advances and valuable support from the NIH over several decades, the everyday
lives of people living with epilepsy remain largely unchanged. A vast number of patients (more
than 30% of adults and 20-25% of children) don’t respond to treatment.12,13 This number is much
higher for patients with rare, genetic epilepsies. For example, nearly 60% of tuberous sclerosis
complex (TSC) patients with focal seizures exhibit drug resistance, while a small-scale study of
patients with mutations of the SCN8A gene, demonstrated nearly 90% being unresponsive to
treatment.14,15 There has been no decrease in premature deaths due to the epilepsies, especially
among children. There are no biomarkers for the vast majority of the epilepsies and few effective
technologies to track real-time data from patients. Clinicians cannot predict drug efficacy, adverse
side effects or long-term prognosis for any given patient. These intractable issues are further
complicated by barriers that patients face in accessing care and participating in research. As the
Chief of the Dell Children’s Comprehensive Epilepsy Center, Dr. Dave Clarke has stated,
“There are still huge swaths of the population affected by the epilepsies that have no access, no voice and are unheard and not part of the research community. You have these vast differences in care.”
Funding for epilepsies research is disproportionately low compared to other health conditions,
including other major neurological disorders. For context, $24.5 billion in direct U.S. healthcare
spending is attributable to epilepsy or seizures, with the total healthcare burden being at least $54
billion.16 However, only half of a percent of the more than $42 billion the NIH spends on medical
research each year, goes to epilepsy.17 This disparity has worsened since 2007 and cannot be
explained by differences in the incidence or the overall impact of these diseases on Americans.
Another significant challenge to understanding the epilepsies and developing new therapies is the
lack of comprehensive, timely, representative data. The nation has insufficient surveillance data
on the spectrum of the epilepsies, which could contribute to some of the disparity in funding that
the epilepsies receive. The cause of the disease is unknown in about 50% of cases, according to
the WHO. This underscores the need for federal investment to better understand the root causes of
the disease and its progression, and facilitate translation of acquired knowledge into therapies that
can improve the quality of life for those impacted by the epilepsies.
This past year, considerable progress was made in raising the profile of the epilepsies, including
the establishment of the Congressional Epilepsy Caucus. Our community is united and continues
to work collaboratively to improve the lives of people with the epilepsies. We welcome the
opportunity to collaborate with government partners to facilitate better outcomes and prioritize
development of more effective treatments. Given the high incidence of the epilepsies in the U.S.,
it is nearly impossible to pass through daily life without encountering persons directly impacted
by these disorders. The epilepsies, therefore, merit greater, more strategic investment and attention
proportionate to their high personal and economic costs. Moreover, research advances in brain
health can catalyze breakthroughs across the wider spectrum of health, which aligns with the
priorities of your administration, particularly in improving access to and the quality of care,
promoting health equity, bettering understanding of rare diseases, and fostering an innovation
ecosystem.
As part of your administration’s forthcoming budget proposal, we strongly encourage you to
strategically augment federal investment in the epilepsies including: 1) programs with a high
potential for translational payoff that can lead to better health outcomes for people living with the
epilepsies and 2) existing funding streams at NIH, CDC, HRSA, VA and DoD to support research
needed to further understand the epilepsies. Thank you for your consideration.
Sincerely,
M. Scott Copeland
Co-Founder, Epilepsies Action Network
Principal, RST Development, LLC
CEO, Z-Pop Media, LLC
Jillian Copeland, MS
Co-Founder, Epilepsies Action Network
Founder, Main Street
Owner & Operator, The Soulfull Café
Founder, The Diener School
Joined By:
1 Hesdorffer et al., Estimating risk for developing epilepsy. A population-based study in Rochester, Minnesota Neurology 2011;76:23–27
2 Zack MM and Kobau R, National and State Estimates of the Numbers of Adults and Children with Active Epilepsy — United States, 2015 MMWR Morb Mortal Wkly Rep 2017;66:821-825
4 GBD 2017 US Neurological Disorders Collaborators, Burden of Neurological Disorders Across the US From 1990-2017 A Global Burden of Disease Study, JAMA Neurol. 2021;78(2):165-176.
8 D'Gama AM, Mulhern S, Sheidley BR, et al. Evaluation of the feasibility, diagnostic yield, and clinical utility of rapid genome sequencing in infantile epilepsy (Gene-STEPS): an international, multicentre, pilot cohort study. Lancet Neurol. 2023;22(9):812-825. doi:10.1016/S1474-4422(23)00246-6
9 Bershteyn M, Bröer S, Parekh M, et al. Human pallial MGE-type GABAergic interneuron cell therapy for chronic focal epilepsy. Cell Stem Cell.2023;30(10):1331-1350.e11. doi:10.1016/j.stem.2023.08.013
11 Barsh GR, Wusthoff CJ. Can electronic medical records predict neonatal seizures?. Lancet Digit Health. 2023;5(4):e175-e176.
doi:10.1016/S2589-7500(23)00041-9
12Chen et al., Treatment Outcomes in Patients with Newly Diagnosed Epilepsy Treated With Established and New Antiepileptic Drugs A 30-Year Longitudinal Cohort Study JAMA Neurol 2018;75(3):279-286,
14Jeong A, Nakagawa JA, Wong M. Predictors of Drug-Resistant Epilepsy in Tuberous Sclerosis Complex. J Child Neurol. 2017;32(14):1092-1098. doi:10.1177/0883073817737446
15Larsen J, Carvill GL, Gardella E, et al. The phenotypic spectrum of SCN8A encephalopathy. Neurology. 2015;84(5):480-489.
doi:10.1212/WNL.0000000000001211
16Moura LMVR, Karakis I, Zack MM, Tian N, Kobau R, Howard D. Drivers of US health care spending for persons with seizures and/or epilepsies,2010-2018. Epilepsia. 2022;63(8):2144-2154. doi:10.1111/epi.17305
17https://report.nih.gov/funding/categorical-spending#/; https://www.nih.gov/about-nih/what-we-do/budget
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