Sickle cell awareness
September is National Sickle Cell Awareness Month, and just a few weeks ago during the summer, Chuck Adams, MSW, social worker in the Comprehensive Sickle Cell Center at Children's Hospital of Philadelphia, was in Washington, DC, to present before members of Congress, staff and the public at an educational briefing sponsored by the Congressional Sickle Cell Caucus on Capitol Hill.
Panelists, including Mr. Adams, discussed the unique medical issues that face children with this disease, as well as the most recent research and medical advancements in treating sickle cell.
Childhood cancer survivorship
Also this summer, Anne F. Reilly, MD, MPH, Medical Director of the Cancer Center at Children's Hospital of Philadelphia, presented in a congressional briefing hosted by the Children’s Cause for Cancer Advocacy about childhood cancer survivorship and access to adult follow-up care. Childhood cancer survivors face distinct challenges in transitioning to adulthood, including identifying the correct medical providers, ensuring continuous health insurance coverage, and accessing late-effects and specialty clinics.
September is also Childhood Cancer Awareness Month, when we celebrate and honor all children and families who have been impacted by cancer, as well as highlight the importance of pediatric cancer research to advance new treatment options and cures.
Pediatric research funding
Dennis R. Durbin, MD, MSCE, Assistant Vice President and Chief Clinical Research Officer at Children's Hospital of Philadelphia Research Institute, spent a day on Capitol Hill discussing the significance of pediatric research funding with congressional staff. He also emphasized the importance of including children in research studies to more effectively advance pediatric medical breakthroughs.
On August 9, Congressman Donald Norcross (D-NJ) held a constituent services fair at Camden Community College in Blackwood, NJ, where Jennifer McGuire, MD, a Pediatric Neurologist in the Division of Neurology at Children's Hospital of Philadelphia, participated in a panel entitled, "Zika Virus and other Mosquito-borne Illnesses." Dr. McGuire spoke about the effects of the Zika virus on babies and children and answered questions from the public.
ACE Kids Act advocacy
Peter Grollman, Senior Vice President, Public Affairs, and Sarah Guerrieri, Federal Affairs Manager at Children's Hospital of Philadelphia, were on Capitol Hill in September to meet with staff of a number of members of Congress about the ACE Kids Act.
The Advancing Care for Exceptional (ACE) Kids Act would improve care coordination and delivery for children with complex, chronic conditions and insured by Medicaid. It now has more than 218 bipartisan House co-sponsors, a majority, and its Senate companion bill has 37 bipartisan cosponsors. Children’s hospitals across the country, including CHOP, will continue to advocate for its passage.
Please contact Sarah Guerrieri if you have any questions about CHOP’s involvement in government affairs at the federal level.