Welcome to the Advocacy Brief, a quarterly offering from the American Society of Pediatric Hematology/Oncology. The goal of this e-newsletter is to inform members about legislative and regulatory issues impacting the profession of pediatric hematology/oncology and the patients we serve.
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Legislative/Regulatory News
State of the Union Pledges Funds to Childhood Cancer
During the February 5, 2019, State of the Union address, the President announced that he would seek an additional $500 million over ten years to fund research related to childhood cancer. In an additional follow-up call with childhood cancer stakeholders, including ASPHO, members of the Trump Administration specified that the funding will be used for data sharing in an effort to find new treatments and protocols for childhood cancers. No other additional details have been released at this time.
Sickle Cell Disease Bill signed Into Law
On December 12, 2018, the Sickle Cell Disease and Other Heritable Blood Disorders Research, Surveillance, Prevention, and Treatment Act of 2018 (S.2465) was signed into law. This bill creates funding opportunities to study aspects of sickle cell disease, it creates a surveillance program, and reauthorizes a sickle cell disease treatment demonstration program at the Health Resources and Services Administration. ASPHO joined the American Society of Hematology (ASH) in supporting this bill through sign-on letters and grassroots efforts. Thank you for contacting your Members of Congress to request that they support this bill.
ASPHO Supports Loan Repayment Program
ASPHO joined the American Academy of Pediatrics (AAP) and 61 other groups to support reauthorizing loan repayment for pediatric subspecialists as part of the broader effort to reauthorize Title VII health professions workforce programs. If enacted, this program would increase pediatric subspecialists and encourage greater geographic distribution, ultimately increasing access to children in underserved areas.
ASPHO Supports Letter to General Accountability Office
ASPHO joined with AAP to support a reauthorization of the Pediatric Subspecialty Loan Repayment Program (PSLRP, Sec. 775 of the Public Health Service Act), part of the Title VII Health Professions programs administered by HRSA. This program would provide up to $35,000 in loan repayments per year up to three years for pediatric subspecialists in exchange for serving in an underserved area. This bill, if authorized, would increase access to care for patients by bringing critical pediatric subspecialists to the area.
Alliance for Childhood Cancer Action Days
The Alliance for Childhood Cancer is holding their annual lobby days, called Action Days, in Washington, D.C., on March 26-27. The Alliance will be lobbying for funding for the Childhood Cancer STAR Act, a bill that was signed into law in 2018. The STAR Act creates funding opportunities for research into treatment and survivorship of childhood cancer. Although the legislation was signed into law that created these programs, the legislation did not include funding.
New Committee to Recommend Sickle Cell Disease Strategic Plan
The National Academies of Sciences, Engineering, and Medicine, by request of The Department of Health and Human Services (HHS), Office of Minority Health, has convened a committee to recommend a strategic plan of action to address sickle cell disease in the United States. In particular, this committee will study current practice guidelines, factors associated with sickle cell disease, and treatment and survivorship. Following this research gathering, the committee will recommend a series of programs and policies related in the areas of barriers to care, surveillance programs, and research. The committee met for the first time February 21-22. For more information, please go here.
For more information on our coalition partners and activities here are some helpful links:
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