June 2025
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. Visit ASPHO’s Health Policy & Advocacy webpage for updates on sign-on letters, legislative efforts, and more information to support pediatric hematology/oncology advocacy.
ASPHO Bill Tracker
Visit ASPHO’s Legislative Tracking Chart to see a list of bills that ASPHO is monitoring.
HHS Removes all 17 Members of ACIP
By Arhanti Sadanand, MD, Children’s Healthcare of Atlanta, ASPHO Advocacy Committee Member
On June 9, 2025, Robert F. Kennedy, Jr, the Secretary of Health and Human Services, fired all 17 sitting members of the Advisory Committee for Immunization Practices (ACIP), the vaccine advisory board for the Centers for Disease Control and Prevention (CDC). This unprecedented decision was purportedly made to "restore public trust in...unbiased science."
ACIP is a federal advisory committee, comprised of medical experts from various fields of medicine and public health, which develops evidence-based recommendations on vaccine use. The Centers for Disease Control and Prevention (CDC) then sets the vaccine schedule for children and adults based on the recommendations from ACIP. Additionally, the vaccines recommended by the CDC are required to be covered under the preventive services mandate of the Affordable Care Act (ACA).
The termination of an entire board of scientific experts will have far-reaching effects for the health of American children, including our pediatric hematology/oncology (PHO) patients:
- ACIP provides immunization guidelines for our patients with sickle cell disease, or other patients with asplenia, helping protect our patients against severe pneumococcal and meningococcal disease.
- ACIP makes recommendations regarding patients with immunodeficiencies to help keep them and their household contacts safe.
- ACIP has made recommendations regarding the HPV vaccine for adolescents and young adults, importantly preventing a secondary cancer in our childhood cancer survivors.
A week after firing the full committee, Secretary Kennedy named 8 new members. As these new members were named without transparency nor through the typical vetting process, little is known about their backgrounds or scientific expertise. However, it is extremely concerning that these new appointees may serve an agenda that is opposed to vaccinations and evidence-based medicine. We continue to hope for a brighter future where the health of all of our patients and children is prioritized.
ASPHO members are encouraged to reach out to your Senators and Representatives in Congress to let them know that you oppose these changes and the impact they could have on access to vaccines. Pediatric hematology/oncology patients are often immunocompromised and fewer people being vaccinated can impact their quality of life. Advocate to ensure that PHO patients and their families will be able to access necessary vaccinations.
Physician Data Query Board Dismissed by NIH
By Louis Rapkin, MD, UPMC Children’s Hospital of Pittsburg, ASPHO Alliance for Childhood Cancer Liaison
The Physician Data Query (PDQ) was initially mandated in 1971 as part of the National Cancer Act of 1971, the legislation that founded the National Cancer Institute and signed into law by President Nixon. Its stated mission was to “Collect, analyze, and disseminate all data useful in the prevention, diagnosis, and treatment of cancer….” PDQ was officially launched in 1977, and in the ensuing 48 years has grown to provide information about ongoing trials, disease information, and recommended therapeutic strategies based on published research with ongoing peer review.ⁱ These summaries are available for clinicians (professional versions) and patients (parent versions) in English, Spanish, Japanese, and Mandarin. The PDQ editorial board was formalized in 1980, and the Pediatric Editorial Board was added in 1987. Initially available via modem connection to the National Library of Congress in 1984, PDQ was placed on the internet in 1995, and has been a free, concise summary of adult and pediatric oncology treatment recommendations since.ⁱⁱ
On May 8, 2025, the Pediatric PDQ editorial board received an email from the federal government stating their services would be terminated. At the same time, the staff that had supported PDQ at the federal government were placed on indefinite leave. Per the communication, both adult and pediatric PDQ were expected to be discontinued. At this time, there is no posting on the PDQ website explaining the change in status or future steps. PDQ was the original source of communal peer reviewed treatment guidelines for both pediatric and adult cancer, and having access improves the care of patients and especially children with cancer in the US and around the world.
The editorial board is made up of approximately 30 members, with Kim Ritchey, MD serving as Chair of the Pediatric PDQ since 2006. On May 12, 2025, Dr. Ritchey wrote to Jayanta Bhattacharya MD, PhD, Director of the National Institutes of Health, expressing the importance of the Pediatric PDQ as a real-time resource that has been a source of treatment guidelines. As of this writing, there has not been a reply.ⁱⁱⁱ
ASPHO members are encouraged to reach out to your Senators and Representatives in Congress to express concerns about losing this valuable resource for pediatricians.
ⁱ Manrow RE, Beckwith M, Johnson LE. NCI's Physician Data Query (PDQ®) cancer information summaries: history, editorial processes, influence, and reach. J Cancer Educ. 2014 Mar;29(1):198-205. doi: 10.1007/s13187-013-0536-3. PMID: 23996204.
ⁱⁱ Ibid
ⁱⁱⁱ Personal Communication