JOIN US IN CAMPAIGNING
FOR A NATIONAL PLAN
FOR the Epilepsies
THERE'S ONLY ONE PATH
TO A NATIONAL PLAN FOR THE EPILEPSIES.
THE ONE WE FORGE TOGETHER.
PEOPLE WITH EPILEPSY, CAREGIVERS,
CLINICIANS, RESEARCHERS
& POLiCYMAKERS – ARE ALL WITH US.
ONE VISION. ONE VOICE. ONE FUTURE.
WILL YOU JOIN US?
A National Plan for the Epilepsies will give us a clear, direct, shared path toward a better future for people living with the epilepsies.
01
WHAT IS A NATIONAL PLAN?
A National Plan is passed by Congress and signed into law by the President. It gets everyone moving in the same direction by developing a framework and roadmap for collaboration – providing clear vision and direction, ensuring the efficient use of resources, promoting sustainable and equitable progress, and fostering good governance.
02
WHAT CAN OUR PLAN ACHIEVE?
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Reduce epilepsy-related mortality from all causes
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Improve the detection, prevention, diagnosis, and treatment of the epilepsies and co-existing conditions
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Decrease socioeconomic, racial, geographic, and other disparities in care
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Increase the breadth and depth of epilepsy research
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Expand national surveillance (data collection) to capture the magnitude and diversity of the epilepsies
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Enhance public awareness and engagement
03
Other prevalent neurological conditions have NAtional Plans.
What Have They Achieved?
Alzheimer’s, Parkinson’s, Autism, ALS, and MS all have National Plans. (Epilepsy is the only common neurological disorder without one.)
Their plans have resulted in:
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Increased funding for targeted research
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Identified biomarkers to expedite diagnosis
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Tailored treatments individualized to patients
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Established data tracking systems to accurately report disease trends
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Improved and expanded training for healthcare providers
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Supported caregiver and community-based programming
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Funded awareness campaigns to educate and reduce stigma
Even with recent Congressional investments in NIH, less than .5% of biomedical research funding goes to epilepsies. There is no mechanism to coordinate epilepsies efforts across the federal government.
Greater federal attention to, and investment in the epilepsies, is necessary to coordinate and expedite efforts to prevent, diagnose, treat and cure the epilepsies and other seizure disorders.
1 in 26
people will develop epilepsy at some point in their lives.
3.4 MILLION
people living with active epilepsy in the U.S.
$54 BILLION
economic impact of the epilepsies and seizures.
30%
percentage of people who don't respond to epilepsy medications.
2-3X
people with epilepsy have a risk of premature death 2-3 times higher than general population.
[Statistic sources at bottom of page.]
50%
adults with uncontrolled seizures live in <$25,000/yr households.
OUR COALITION IS GROWING
HOW DO WE GET A NATIONAL PLAN?
The introduction and passage of a National Plan requires extensive education on Capitol Hill. We must collectively spread the word about the impact of the epilepsies on patients, the burden on families, and the cost to our economy and already overloaded healthcare system. Once a bill is introduced, advocates work to build widespread bipartisan support for the bill. Upon passage, ALL epilepsies stakeholders work together to draft the plan.
Sources 1. Hesdorffer DC, Logroscino G, Benn EK, Katri N, Cascino G, Hauser WA. Estimating risk for developing epilepsy: a population-based study in Rochester, Minnesota. Neurology. 2011 Jan 4;76(1):23-7. doi: 10.1212/WNL.0b013e318204a36a. PMID: 21205691; PMCID: PMC3032191. 2. Zack MM, Kobau R. National and state estimates of the numbers of adults and children with active epilepsy — United States, 2015. MMWR. 2017;66:821–825. DOI: 10.15585/mmwr.mm6631a1. 3. Moura 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 Aug;63(8):2144-2154. doi: 10.1111/epi.17305. Epub 2022 May 29. PMID: 35583854; PMCID: PMC10969856. 4. Chen Z, Brodie MJ, Liew D, Kwan P. Treatment Outcomes in Patients With Newly Diagnosed Epilepsy Treated With Established and New Antiepileptic Drugs: A 30-Year Longitudinal Cohort Study. JAMA Neurol. 2018 Mar 1;75(3):279-286. doi: 10.1001/jamaneurol.2017.3949. Erratum in: JAMA Neurol. 2018 Mar 1;75(3):384. doi: 10.1001/jamaneurol.2018.0018. PMID: 29279892; PMCID: PMC5885858. 5. Trinka E, Rainer LJ, Granbichler CA, Zimmermann G, Leitinger M. Mortality, and life expectancy in Epilepsy and Status epilepticus-current trends and future aspects. Front Epidemiol. 2023 Feb 23;3:1081757. doi: 10.3389/fepid.2023.1081757. PMID: 38455899; PMCID: PMC10910932. 6. US Centers for Disease Control and Prevention Epilepsy Program. About one-half of adults with active epilepsy and seizures have annual family incomes under $25,000: The 2010 and 2013 US National Health Interview Surveys, Epilepsy Behav. 2016;58(5):33–34. https://doi.org/10.1016/j.yebeh.2016.02.024