APHON Participates in Alliance for Childhood Cancer Action Days

For the first time since 2019, the Alliance for Childhood Cancer held an in-person Action Days on April 24 – 25, 2023, bringing together the pediatric cancer community to advocate for issues currently before Congress in Washington D.C. There were approximately 500 advocates from both the medical and provider communities as well as pediatric cancer patients and their families who received advocacy training and then had a series of Hill visits. 

Advocates also heard updates and information regarding efforts to improve research and outcomes for pediatric cancer patients from speakers from federal agencies, including:

• Dr. Monica Bertagnollis, Director of the National Cancer Institute (NCI), and current nominee to lead the National Institutes of Health (NIH)
• Dr. Brigitte Widemann, Chief of the Pediatric Oncology Branch of the NCI
• Dr. Catharine Young, Assistant Director of the Cancer Moonshot
• Senator Jack Reed from Rhode Island, longtime supporter of the Alliance

In order to prepare for the next day the funding requests for the NIH, NCI, and other childhood cancer programs, which would be the focus of the Hill visits, were reviewed.   Attendees and advocates also reviewed best practices for approaching their meetings with Congressional delegations.

On April 25, the Alliance delegation traveled to Capitol Hill to advocate to Senators and Representative for the following:

• Appropriate full funding, $30 million, for the Childhood Cancer Survivorship, Treatment, Access, Research (STAR) Act.  This piece of legislation, originally passed in 2018, was reauthorized at the end of last year and needs funds allocated for fiscal year (FY) 24.  The STAR Act has funded some very important NCI efforts including the National Childhood Cancer Registry and the Molecular Characterization Initiative.
• Increased funding of $9.9 billion for NCI in FY24
• Appropriate $50.9 billion to NIH in FY24
• Provide full funding of $50 million to the Childhood Cancer Data Initiative (CCDI)

Congressional meetings including the patients and families of pediatric cancer patients, some of whom had lost children, represented a good portion of the advocacy efforts on Capitol Hill by providing vital personal stories that highlighted the need for the requested funding and research opportunities. 

APHON Joins Drug Shortages Workgroup 

To move the advocacy efforts on drug shortages forward, APHON is now a member of the Alliance for Childhood Cancer’s Drug Shortages Workgroup. The current focus of this group is to compile data to demonstrate the impact shortages are having on pediatric cancer patients and to gather stories from clinicians, patients, and families to describe their experiences with this issue. All of these efforts will be utilized to develop a comprehensive advocacy strategy to find long-term and permanent solutions to drug shortages.

The Drug Shortages Workgroup also developed a survey to collect stories from both clinicians and pediatric cancer patients and families on how drug shortages are impacting patients, physicians, and institutions. We encourage APHON members to fill out this survey to ensure the perspective of pediatric nurses are included all advocacy efforts moving forward.

APHON Endorses the Gabrielle Miller Kids First Research Act 2.0

In conjunction with the Alliance for Childhood Cancer, APHON has endorsed the newly reintroduced House and Senate versions of the Gabriella Miller Kids First Research Act 2.0. This bill would reauthorize and increase funding for the National Institute of Health’s (NIH) Gabriella Miller Kids First Pediatric Research Program (Kids First), which has supported lifesaving research of treatments for childhood cancer.

APHON Requests Increased Funding for NIH and NCI

APHON, and 16 other member organizations of the Alliance for Childhood Cancer, sent letters to House and Senate Appropriations Committees to make multiple funding requests related to pediatric cancer research and programs. This includes increased funding of $50.9 billion for the National Institutes of Health (NIH) and $9.9 billion for the National Cancer Institute (NCI). The letters also request level funding of $30 million to implement the Childhood Cancer Survivorship, Treatment, Access, Research (STAR) Act and $50 million for the Childhood Cancer Data Initiative (CCDI).   

Increased Funding for the Peer Reviewed Cancer Research Program Supported by APHON

APHON recently joined the Alliance for Childhood Cancer in requested increased federal funding for the Peer Reviewed Cancer Research Program (PRCRP) and the continued inclusion of pediatric, adolescent, and young adults (AYA) cancers, pediatric brain tumors, neuroblastoma, sarcomas, germ cell cancers, blood cancers, lymphoma, and thyroid cancer as eligible topics of funding under the program.   

APHON Urges Congressional Action on Nursing Priorities in Conjunction with National Nurses Week

Along with 62 other member organizations of the Nursing Community Coalition (NCC), APHON signed onto a letter urging Congress to take action on top appropriations and legislative priorities that impact nursing education, workforce, practice, and research. This letter coincided with the celebration of National Nurses Week 2023.

The priorities include:

• Support at least $530 Million for Title VIII Nursing Workforce Development Programs in FY 2024.
• Support at least $210 Million for the National Institute of Nursing Research (NINR) in FY 2024.
• Invest in Nursing Education: Support our Nursing Schools, Faculty and Students.
• Support the Nursing Workforce: Ensure Patients have Access to the High-Quality Care Provided by our Nation’s APRNs.
• Make Waivers that have Supported our Nation’s Health during this Public Health Emergency Permanent.
• Institute Safety Measures for the Current and Future Nursing Workforce.
• Invest in Maternal Health Today for a Healthier Tomorrow.
• Support Mental Health and Healthy Working Environments for Nurses.

APHON Requests Funding for Quality Palliative Care

APHON joined the Patient Quality of Life Coalition (PQLC) in requesting support from House and Senate Appropriations Subcommittees on Labor, Health and Human Services, Education, and Related Agencies to prioritize a Palliative Care, Trans-Institute Strategy led by the National Institute of Aging in order to increase access to quality palliative care and appropriate, effective pain management.