November 2017

The ASPHO Advocacy Brief

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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Special Features

ASPHO Bill Tracker

Visit ASPHO’s Legislative Tracking Chart to see a list of bills that ASPHO is monitoring.

ASPHO Heads to Capitol Hill

On October 12, 2017, ASPHO President Amy Billett, MD, went to Capitol Hill to meet with the offices of Senators Corey Gardner (R-CO), Richard Burr (R-NC), Lamar Alexander (R-TN), Tim Scott (R-SC), and Representative Peter Roskam (R-IL) to urge support for the Childhood Cancer Survivorship, Treatment, Access, and Research (STAR) Act and the Sickle Cell Disease Research, Surveillance, Prevention, and Treatment Act. The goals of the meeting were to add the members of Congress as cosponsors to the STAR Act and to continue to build momentum within the Senate Committee on Health, Education, Labor, and Pensions (HELP). The sickle cell disease (SCD) legislation is on the verge of being introduced in the Senate, and the meetings informed key Senate offices of the legislation to gain support early in the process. Brief summaries of the legislation are as follows:

STAR Act

The bill would expand opportunities for childhood cancer research, improve efforts to identify and track childhood cancer incidences, and enhance the quality of life for childhood cancer survivors. This would expand existing efforts to collect biospecimens of childhood cancer patients enrolled in NCI-sponsored clinical trials to collect and maintain relevant clinical, biological, and demographic information on all children, adolescents, and young adults with cancer. The bill also authorizes grants to be awarded to state cancer registries to identify and track incidences of child, adolescent, and young adult cancer and enhance research on the late effects of childhood cancers, including conducting a study on insurance coverage and payment of care for childhood cancer survivors;

Sickle Cell Disease Research, Surveillance, Prevention, and Treatment Act

The bill would enhance federal government activities in research, training, and services. Specifically, the legislation reauthorizes SCD prevention and treatment grants awarded by the Health Resources and Service Administration (HRSA), authorizes the Centers for Disease Control and Prevention (CDC) to award SCD surveillance grants to states, and authorizes research to expand the understand of the cause and find a cure for SCD.

Legislative/Regulatory News

ASPHO Calls on Congress to Extend CHIP Funding

ASPHO joined more than 100 national organizations in calling on Congress to take immediate action to enact a 5-year extension of funding for the Children’s Health Insurance Program (CHIP). Congress missed the September 30 deadline to reauthorize the CHIP program, but the Senate Finance and House Energy and Commerce Committees have both passed their own bills reauthorizing CHIP funding. The Senate’s Keep Kids’ Insurance Dependable and Secure Act of 2017 (KIDS Act) would extend CHIP funding through fiscal year (FY) 2022 and maintain the federal matching rate at current statutory levels through FY 2019. For more information on CHIP reauthorization, read this article from Fierce Healthcare.

ASPHO Endorses Ensuring Children’s Access to Specialty Care Act of 2017

ASPHO joined with other organizations in endorsing the Ensuring Children’s Access to Specialty Care Act of 2017 (H.R. 3767/S. 989). This legislation would modify the National Health Service Corps (NHSC) loan repayment program to allow pediatric subspecialists working in underserved areas to participate.

ASPHO Supports Establishing Pediatric Subspecialist Loan Repayment Program

ASPHO signed on to a letter to leadership of the House Energy & Commerce Health Subcommittee urging them to support the inclusion of loan repayment for pediatric subspecialists as part of the effort to reauthorize the Title VII health professions workforce programs.

Initiative Launched to Examine the Maintenance of Certification Program

The American Board of Medical Specialties has launched an initiative entitled Continuing Board Certification: Vision for the Future that will bring stakeholders together to address ways to revise and modernize Maintenance of Certification (MOC) programs. Read more in this Modern Healthcare article.

NICHQ Releases Congressional Report on its SCD Treatment Demonstration Program Findings

On September 29, The National Institute for Children’s Health Quality (NICHQ) released a congressional report on the outcomes from the Sickle Cell Disease Treatment Demonstration Program (SCDTDP) 2014–2017. Serving as the national coordinating center for the SCDTDP, NICHQ worked with four regional coordinating centers to improve access to care by increasing the number of providers treating patients with SCD, providers prescribing hydroxyurea, and patients with SCD that are receiving care from providers who are knowledgeable about treating SCD. A full copy of the congressional report—which includes the outcomes, lessons learned, and recommendations stemming from this work—is available on the NICHQ website.

New Treatment Raises Topic of Payment Reform

The recent approval of Kymriah (tisagenlecleucel) for certain pediatric and young adult patients with B-cell precursor acute lymphoblastic leukemia (ALL) that is refractory or in second or later relapse has spurred the Centers for Medicare & Medicaid Services (CMS) to continue to discuss the development of payment models that reflect the value delivered to patients. Read more from CMS.

ASCO Study Decreases Age Eligibility Requirements

The American Society of Clinical Oncology (ASCO) Targeted Agent and Profiling Utilization Registry (TAPUR) Study is planning to decrease the enrollment age from 18 to 12 years to extend the opportunity for participation to adolescent patients with advanced cancer where there is a defined adolescent dose for the study drugs. View the press release for more details.

Cancer Moonshot Funding Opportunities

The 21st Century Cures Act, which was signed into law in December 2016, made $300 million available in Fiscal Year (FY) 2017 for the National Cancer Institute (NCI) to accelerate research efforts aligned with the Cancer Moonshot. NCI has updated the Cancer Moonshot webpage to list all funding opportunity announcements aligned with the goals of the Moonshot.

For more information on our coalition partners and activities, please visit:

Alliance for Childhood Cancer
American Academy of Pediatrics
American Society of Hematology
Sickle Cell Disease Coalition

Please visit our Health Policy & Advocacy website section for past issues of Advocacy Brief.