top of page
  • Epilepsies Action Network

Epilepsies Stakeholders Across the Nation Urge President Biden to Increase Epilepsies Research Funding on International Epilepsy Day


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


Comments


bottom of page