In early November 2022, we previewed a new initiative of becoming stronger advocates for our families and their challenges at the national level.
Now, after a year-long planning process, we are proud to announce our official 2023 Policy Agenda. The advocacy priorities listed below align with our most engaged programs, ensuring that the support we seek from lawmakers will directly impact our work with families and medical providers.
Shortening the Diagnostic Odyssey
An early and correct diagnosis allows parents, caregivers, and physicians to make more informed treatment decisions. Still, for too many in the CNF community, the diagnostic journey takes too long, is burdensome, and can be expensive. Advocacy to address these issues will support education for providers and caregivers, create better systematic approaches to the early identification of complex conditions, and allow for more access to innovative diagnostic tools.
Facilitating Access to Clinical Trials
Medical professionals, patients, and caregivers all face obstacles when it comes to understanding and accessing clinical trials. Our advocacy efforts here will focus on helping medical providers learn about relevant trials and then communicate them to their patients. For families, we want to tackle obstacles like transportation and childcare, increase participant diversity, and encourage more patient/family input into the research process.
Increasing Care Coordination
Managing a neurologic condition often requires the burdensome task of working with different medical providers across a variety of disciplines. Children and families in this situation need better care coordination among providers, a streamlined prior authorization process, and fewer hoops to jump through. Advocacy in this area will aim to address all these issues, ultimately improving access to timely care and lowering overall healthcare spending.
Supporting Children and Youth with Special Health Care Needs (CYSHCN) and their Caregivers
There is a need for a unifying, prominent national voice for children and youth with special health care needs (CYSHCN) and their caregivers, and CNF believes that we can fill this role. CNF exists to support the 1 in 5 children in the U.S. with neurologic conditions. As such, we are eager to embrace our position as a convener to learn from and share our community’s message with our advocacy partners in the CYSHCN area and policymakers.
For all of these priorities, we are leveraging the collective expertise of the CNF community and working closely with our federal advocacy partners at the Food and Drug Administration, the Centers for Medicare and Medicaid Services, the Agency for Healthcare Research and Quality, and more.
But most importantly, we need you on board.
As caregivers, patients, and medical professionals with the lived experiences of managing neurologic conditions, you have important opinions that we want to consider.
What sorts of advocacy matter to you and your family? What questions do you have about how to get involved in advocacy issues?