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Alzheimer’s, AUTISM, Parkinson’s, AND ALS all have National Plans.
Epilepsy is the only common neurological disorder without ONE.
What is a
national plan?
Passed by Congress and signed into law by the President, A NATIONAL PLAN IS A FEDERAL INVESTMENT IN THE FUTURE OF THE EPILEPSIES — providing TRANSFORMATIVE resources FOR EVERYONE LIVING WITH, AFFECTED BY, OR WORKING WITH EPILEPSY.
Why do we need a
national plan?
To reduce epilepsy-related mortality from all causes
To improve the detection, prevention, diagnosis, and treatment of the epilepsies and co-existing conditions
To enhance public awareness and engagement
To expand national surveillance (data collection) to capture the magnitude and diversity of the epilepsies
To decrease socioeconomic, racial, geographic, and other disparities in care
To increase the breadth and depth of epilepsy research
WHY DO YOU NEED A NATIONAL PLAN?
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FOR PEOPLE LIVING WITH EPILEPSY AND CAREGIVERS•Earlier diagnosis, better treatments, improved management, and better outcomes, for all patients including those in underserved communities •Better access to specialized care and precision interventions through improved diagnostic tools and tests •Accelerated early diagnosis to make better informed decisions about treatment, care and future planning •Personalized care addressing the whole person with both medical, physical, emotional, and social needs •Increased awareness and tools to prevent SUDEP and other causes of mortality, morbidity, and disability. •More support, resources, training, and aid for caregivers who bear a large emotional, physical, and financial burden •Programs, respite services, counseling, and more to reduce caregiver stress and burnout •Awareness and recognition and public acknowledgement of the burden of the epilepsies
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FOR RESEARCHERS & CLINICIANS•More federal funding to understand the disease, develop treatments, seek out cures, improve interventions and management, and understand the burden on individuals, families, and healthcare systems •More training to improve the quality and speed of diagnosis, treatment, and communication •Accelerates the understanding of who the epilepsies affect (and how and when it affects them) through improved surveillance – so interventions can be targeted •Improve clinical care and standardized practices with updated tools, resources, guidelines, and protocols •Better collaboration across different providers, institutions and geographies to improve the continuity and quality of care •Increased federal investment stimulates private investment and spurs public and private partnerships •Improves collaboration between government, universities, private companies, and nonprofits speeding up the process and reducing duplication of efforts •Incentivizes promoting data sharing to amplify learnings •Encourages investment in new areas including early detection, drug development, innovative caregiving models
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FOR THE ECONOMY•Early diagnosis and better management reduce the long-term economic burden by preventing and/or reducing hospitalizations, ER visits, as well as, unnecessary diagnostics and treatments •Support for caregivers to reduce their burden and may help improve productivity in the workforce for people who otherwise have to leave jobs to care for their loved ones •Spurred growth in biotech, healthcare, and technology creates jobs and economic opportunities •Reduced public costs through better management reduces Medicare and Medicaid spending •Better understanding of the economic, physical and mental health burden on individuals, families, communities, systems, and the country will ultimately reduce costs for a chronic, complex, life-long disorder.
How wILL WE get a
national plan?
ALL OF US – PEOPLE LIVING WITH EPILEPSY, CAREGIVERS, CLINICIANS, RESEARCHERS, AND CAREGIVERS – WORKING TOGETHER TOWARD A BETTER FUTURE FOR THE MILLIONS OF PEOPLE LIVING WITH EPILEPSY.
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