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. Visit ASPHO’s Health Policy & Advocacy webpage for updates on sign-on letters, legislative efforts, and more information to support pediatric hematology/oncology advocacy. Visit ASPHO’s Legislative Tracking Chart to see a list of bills that ASPHO is monitoring. During the 2026 Conference, ASPHO held a General Session focused on advocacy, Advocacy in Action: Shaping Policy, Protecting Patients. This session, developed by the ASPHO Advocacy Committee, included a far-reaching discussion on how current policy and funding decisions are impacting pediatric hematology/oncology, research, and access to care for patients. Our speakers discussed the important role PHO subspecialists play as trusted health advocates and how they may be able to shape policy, protect programs, and maintain and advance care for patients. This session was moderated by Connie Piccone, MD, ASPHO’s Advocacy Committee Immediate Past Chair. Our speakers were experts who focus on health policy, pediatric cancer research, and community engagement: Heidi Russel, MD PhD, the Director for Health Policy at the Baker Institute for Health Policy, and a pediatric oncologist and health economist; Lia Gore, MD, the Chief of Pediatric Hematology/Oncology/BMT-Cellular Therapeutics at the University of Colorado School of Medicine; and Rae Blaylark the President and Chief Executive Officer of Sickle Cell Foundation of Minnesota. All of these speakers have been successful at making an impact in different ways, at both the local and national levels on matters relevant to pediatrics and pediatric hematology/oncology. During the session they brought their unique perspectives to the issues currently facing the health care system and discussed important ways in which ASPHO members may be able to engage at various levels of government, as well as in their communities and institutions. Advocacy is an important component in providing comprehensive, scientifically-sound medical care for the most vulnerable patients. As health advocates, physicians and other health care providers contribute expertise and influence as they work within communities to improve health. Advocacy in pediatrics takes on special importance because most pediatric patients are unable to advocate for themselves. It is important to understand the needs of patients and their families and speak on their behalf in order to best support the mobilization of resources to affect change. As ASPHO continues our advocacy work, we will continue to bring members opportunities for engagement, as well as resources to help you in your efforts at home. In April, the Sickle Cell Disease Coalition (SCDC) and the Sickle Cell Community Consortium (SC3) held the Sickle Cell Disease United Action Forum (Forum). The Forum brought together a diverse group of SCD stakeholders including patients, caregivers, clinicians, researchers, community-based organizations (CBOs), payors, industry and pharmaceutical representatives, and policymakers with a goal to identify gaps in advocacy and care delivery, share lived experiences, and align on collective action to improve outcomes for individuals living with sickle cell disease. ASPHO was represented by Amy Tang, MD, a hematologist from Atlanta. ASHPO was able to provide a unique perspective as pediatricians who treat individuals with SCD. During the 2-day meeting, participants learned about ongoing initiatives from stakeholder groups and discussed ongoing advocacy efforts. There was a focus during the meeting to center the patient voice in decisions about best practices and treatments for research and medical care, so most importantly the group collaborated with SCD individuals themselves to identify shared goals and unmet needs. The Forum included sessions that were designed to determine ways for efforts on SCD to be done across sectors and determine where there may be gaps or limitations in the current landscape. There were also important discussions on how to best integrate patient and caregiver perspectives into both research and advisory structures, how to develop advocacy ready stories, and an examination on the use of AI and technology use in the sickle cell space, including independent innovation as well as industry-led tools and community-led solutions. ASPHO will continue to partner with both the SCDC and the American Society of Hematology (ASH) on policy efforts related to SCD, including working toward passage of the Sickle Cell Disease Comprehensive Care Act. Legislative/Regulatory News The Office of Management and Budget (OMB) has proposed a new rule, Regulation for Federal Financial Assistance, which would overhaul the regulations for all federal grants, and seeks to formalize tighter political control of all federally funded research. This proposed rule would reduce the role of peer review in determining what research would be federally funded as well as limit the ability of all researchers to utilize federal dollars to publish or travel to conferences to present their findings. This proposed rule would also provide more latitude to political appointees to terminate grants at will. This is a proposed rule and currently open for public comment until July 13. Any member of the public is permitted to submit comments. If you have interest in submitting comments, you may do so here. ASPHO continues to work with our partners on this important issue and will keep members updated on ongoing efforts. ASPHO, in partnership with organizations across the cancer community, released a consensus statement identifying the primary drivers of the persistent drug shortage crisis in the United States and proposing actionable policy solutions to protect access to critical cancer medications. The statement outlines three priorities that require immediate action to address both the root causes and patient impact of drug shortages: The organizations who have issued this statement represent thousands of patients, caregivers, and healthcare professionals nationwide. ASPHO will continue to work in partnership with these organizations and remain committed to advancing practical, sustainable solutions that ensure a stable supply of essential cancer medications. Ensuring that no patient faces uncertainty regarding the availability of life-saving treatments remains our highest priority. ASPHO has joined the American Society of Hematology (ASH), the American Academy of Pediatrics, and more than 50 other organizations in support of the Sickle Cell Disease Comprehensive Care Act (S. 721/H.R. 5178). In a letter to the Senate Finance Committee and the House Energy and Commerce Subcommittee on Health the organizations urged these committees to include the legislation in an upcoming hearing or markup. This legislation would authorize state Medicaid programs to submit a state plan amendment to establish SCD health homes to deliver coordinated and comprehensive care. In partnership with more than 50 other organizations, ASPHO signed onto a letter to Health and Human Services Secretary Robert F. Kennedy, Jr. to highlight the importance of the U.S. Preventive Services Task Force (USPSTF) in the fight against cancer and urging him to support the scientific integrity of the Task Force’s work. The USPSTF is charged with making evidence-based recommendations about preventive services, including preventive services related to cancer prevention and early detection. This letter was written after Secretary Kennedy had removed the leaders of the panel and after the panel had not met for over a year. ASPHO joined the American Academy of Pediatrics and more than 400 other medical, public health, and research organizations in requesting increased funding for gun violence prevention research from Congress. Specifically, the groups requested $35 million for the US Centers for Disease Control and Prevention (CDC), $25 million for the National Institutes of Health (NIH), and $1 million for the National Institute of Justice for the purpose of conducting public health research into firearm mortality and prevention. American Academy of Pediatrics Please visit our Health Policy & Advocacy website section for past issues of Advocacy Brief and stay up to date by following #ASPHOAdvocates on Facebook and Bluesky.
June 2026The ASPHO Advocacy Brief
ASPHO Bill Tracker
Special Feature Articles
ASPHO Holds Important Advocacy Session During 2026 Conference
ASPHO Represented at Sickle Cell Disease United Action Forum
OMB Proposes Federal Rule That Could Impact Federal Research Funding
Drug Shortages Consensus Statement Endorsed by ASPHO
ASPHO Continues Support for the Sickle Cell Disease Comprehensive Care Act
Highlighting the Importance of the US Preventive Services Task Force in the Fight Against Cancer
Funding for Gun Violence Prevention Requested
For more information on our coalition partners and activities, visit:
Alliance for Childhood Cancer
American Society of Hematology
Sickle Cell Disease Coalition
