Published onCHOP Talk: A Voice for Children
Grace and Dr. Hedrick were on Capitol Hill to advocate for the passage of the Advancing Care for Exceptional Kids Act of 2015 (ACE Kids Act). The ACE Kids Act is a proposal with the goal of improving the way care is delivered to America’s children with complex medical conditions who are covered by Medicaid.
The Act has garnered wide bipartisan support with more than 130 co-sponsors and endorsement from physicians and families across America. The bill aims to improve coordination of care for children to reduce the burden on families, address problems with fragmented care across state lines and gather national data on complex conditions to help researchers improve treatments for rare diseases, all while reducing costs, potentially saving an estimated $13 billion during its first 10 years.
Dr. Hedrick, Grace, CHOP Vice President Peter Grollman, and Government Affairs Manager Jonathan Hood met with U.S. Sens. Bob Casey (D-PA) and Pat Toomey (R-PA); and U.S. Reps. Jaime Herrera Beutler (WA-3), Ryan Costello (PA-6), Joe Pitts (PA-16) and Glenn Thompson (PA-5). Their conversation with U.S. Rep. Beutler was unique because she also has a daughter with complex healthcare needs.
During all of the visits, Dr. Hedrick, Grace and the team discussed the care Grace needs as a patient with Friedreich’s ataxia and the many providers she sees, as well as the ACE Kids Act, and the importance of federal research funding from the National Institutes of Health (NIH).
They also discussed the federal funding necessary for the Nation’s freestanding children's hospitals to help maintain graduate medical education (GME) programs that train resident physicians, as well as the 21st Century Cures Initiative. All of these initiatives are essential to providing the highest quality and safest care at the most reasonable cost, but also necessary to drive the research to discover new ways of treating both common and rare diseases.
For more information on Family Advocacy Day, please contact Jonathan Hood, manager of Government Affairs, Community Relations and Advocacy for Pennsylvania.
Categories: Federal Policy Update