Did you know 1 in 5 children in the US live with a neurologic condition, many of which require life-long management of physical, cognitive, emotional, and behavioral symptoms?
Did you also know despite the high prevalence and impact of these conditions, families wait an average of nine weeks to access a child neurologist?
Lastly, did you know that many of these families report having financial hardships because of the extraordinary costs related to a neurologic condition?
The Child Neurology Foundation is urgently working to address these unacceptable status quos for wait time and finances.
We want to be advocates at the national level for our families and the challenges they are facing.
Because CNF has long served as a convener for the child neurology community, we are using our unique position to bring together stakeholder organizations and government bodies to discuss these multifaceted issues accurately. In search of solutions that will drive impact, our federal advocacy and policy agenda focuses on four areas.
- Shortening the diagnosis odyssey
- Increasing access to clinical trials
- Improving care coordination
- Supporting children and youth with special health care needs and their caregivers
CNF has already made progress in these areas, and we are optimistic that our accomplishments will enable and inform the policymakers about what is necessary and possible to do for our community. To date, CNF has:
- Been named a Healthy People 2030 Champion
- Met with the White House Office of Science and Technology Policy to discuss strengthening community health through technology
- Met numerous times with staff of members of Congress from both sides of the aisle to discuss the importance of telehealth and digital access and empower champions for the child neurology community.
CNF gave feedback to Congress highlighting the needs of the child neurology community specifically, and children and youth with special health care needs more generally, including on:
- Legislation to follow up on the 21st Century Cures Act legislation
- Development of the Advanced Research Projects Agency – Health (ARPA-H)
- Policies proposed in the Build Back Better Act
- Maintenance of telehealth flexibilities following the end of the COVID-19 Public Health Emergency
- Paid Family & Medical Leave, including expansion of benefits to caregivers for children and youth with special health care needs
- Republican-led Healthy Futures Task Force Request for Information
- Endorsement of the CONNECT for Health Act
CNF provided feedback to numerous parts of the executive branch related to health equity, the needs of the child neurology community, and the experiences of children and youth with special health care needs, including:
- The White House Domestic Policy Council on the importance of paid family and medical leave
- The Centers for Medicare & Medicaid Services on Medicare payment policy and provisions to protect against discrimination in health care;
- Maternal and Child Health Bureau
- National Institutes of Health on the formation of the Advanced Research Projects Agency – Health (ARPA-H)
- National Institute of Neurological Disorders and Stroke on its strategic plan
- National Center for Advancing Translational Science (NCATS) on facilitating the Early Diagnosis and Equitable Delivery of Gene-Targeted Therapies to Individuals with Rare Diseases
- The Office of Management and Budget (OMB) on best practices for advancing equity and increasing support for underserved communities across the federal government
CNF consulted with non-governmental organizations on issues impacting the child neurology community, including:
- The National Academies of Sciences, Engineering, and Medicine’s Ad Hoc Committee Review Federal Policies that Contribute to Racial and Ethnic Health Inequities
- The National Quality Forum (NQF), one of the primary organizations involved in developing quality measures for providers, The committee on Rural Telehealth and Healthcare System Readiness highlighted several aspects of CNF’s comments
The obstacles that our community is facing are heavy. And while our patients, caregivers, and medical professionals are stronger than we can ever comprehend, they don’t deserve to walk this journey alone.
Our goal is to advocate for all the #NeuroHereos in this community so we can further our mission of helping all children live up to their full potential. As CNF becomes more involved in federal advocacy efforts, we are grateful for your continued support.
Let us know your questions about our advocacy efforts at [email protected]