The ASPHO Advocacy Brief
Welcome to the Advocacy Brief, a quarterly offering from the American Society of Pediatric Hematology/Oncology. The goal of this newsletter is to inform members about legislative and regulatory issues impacting the profession of pediatric hematology/oncology and the patients we serve.
ASPHO Bill Tracker
Visit ASPHO’s Legislative Tracking Chart to see a list of bills that ASPHO is monitoring.
Special Feature Contribution
By Eric Sandler, MD, ASPHO Advocacy Committee Member and Alliance Liaison; Shelton A. Viola, MD, ASPHO Alliance Liaison; and Dominic Sawaya, JD MPPA, Manager, Health Policy and Advocacy
In mid-April, ASPHO supported vital National Institutes of Health (NIH) and National Cancer Institute (NCI) funding through the Alliance for Childhood Cancer (Alliance) by signing on to letters sent to appropriations leaders in the House and Senate. This support includes advocating for full funding for the Childhood Cancer Survivorship, Treatment, Access, and Research (STAR) Act (P.L. 115-180) at $30 million and the Childhood Cancer Data Initiative (CCDI) at $50 million in FY 2022.
ASPHO also joined letters to Congress supporting the Peer-Reviewed Cancer Research Program (PRCRP) at the Department of Defense. An increase to $130 million for the PRCRP was requested along with and the continued inclusion of pediatric, adolescent, and young adult cancers, pediatric brain tumors, neuroblastoma, sarcomas, germ cell cancers, blood cancers, lymphoma, and thyroid cancer as eligible topics of funding under the program for FY 2022. This helps advance targeted research in these areas.
Then on April 27, approximately 300 advocates from 39 states met with nearly 200 members of Congress to bring the voice of the childhood cancer community to Capitol Hill. As a member of the Alliance, ASPHO was a major contributor to Childhood Cancer Action Days 2021 and helped conduct nationwide meetings with members of the House and Senate and their staff.
During these meetings, ASPHO members strongly advocated for continued support and funding for the Childhood Cancer STAR Act, which unanimously passed by Congress and became law in June 2018. Congress had provided $30 million each year for the last 3 years to fully fund the programs created by the Childhood Cancer STAR Act. For FY 2022, ASPHO requested $30 million to fully fund the Childhood Cancer STAR Act for the fourth year. ASPHO members also advocated for the provision of significant funding increases for the NIH and NCI, including $50 million to fully fund the CCDI. Specifically, ASPHO asked Congress to provide at least $46.111 billion (a $3.177 billion increase) for NIH and to provide $7.609 billion for NCI.
In the House meetings, representatives who were not already members of the Congressional Childhood Cancer Caucus were encouraged to join and help raise awareness of childhood cancer and promote public policies that will improve care, address the health needs of pediatric cancer survivors, encourage collaboration, and facilitate the elimination of cancer as a threat to children.
Action Days 2021 made excellent use of the virtual medium and the event was among the most impactful yet. ASPHO continues to build on this advocacy success in partnership with the Alliance.
ASPHO partnered with the American Academy of Pediatrics (AAP) on advocacy for the Pediatric Subspecialty Loan Repayment Program (PSLRP, Section 775 of the Public Health Service Act) in the House and Senate. The PSLRP became law through the Coronavirus Aid, Relief, and Economic Security (CARES) Act. However, in order to implement the program, it must be funded via the appropriations process.
Led by the Advocacy Committee, ASPHO members were encouraged to urge their representatives and senators to sign two bipartisan letters supporting $50 million in funding for PSLRP. In the House, the effort was led by Representatives Kim Schrier (D-WA-08) and John Joyce (R-PA-13) with Senators Jack Reed (D-RI) and Bill Cassidy (R-LA) leading the effort in the Senate. The PSLRP will offer up to $35,000 in loan repayment for up to three years for pediatric subspecialists who treat children in underserved areas after the program is funded.
In collaboration with the Sickle Cell Disease Coalition, ASPHO participated in the Knowledge is Power! campaign. This campaign celebrated World Sickle Cell Awareness Day on June 19 and shared knowledge and resources with a wide variety of stakeholders to educate and increase awareness of sickle cell disease.
In order to address care and knowledge gaps related to SCD across the globe, the Sickle Cell Disease Coalition (SCDC) released the Repository of Global SCD Educational Resources. As a member of the SCDC, ASPHO is excited to share these resources, which include presentation slides and infographics. These resources are applicable to both domestic and international stakeholders and are to be used (with appropriate citations) only for education and training.
ASPHO and the Alliance for Childhood Cancer endorsed the bipartisan Gabriella Miller Kids First Research Act 2.0 and sent a letter thanking Representatives Jennifer Wexton (D-VA-10), Tom Cole (R-OK-04), Peter Welch (D-VT-At Large), and Gus Bilirakis (R-FL-12) for introducing the legislation. The bill would redirect penalties collected from pharmaceutical, cosmetic, food supplement, and medical device companies that break the law; the money would then be used to fund critical research on rare pediatric diseases. This act supports the Gabriella Miller Kids First Pediatric Research Program (Kids First), which helps researchers discover new insights into the biology of childhood cancer.