MARCH 28, 2023 – Association of Pediatric Hematology/Oncology Nurses

117th Congress Ends with Advocacy Wins for APHON

At the end of 2022, APHON continued its efforts to move our advocacy agenda forward and work for the passage of priority legislation and funding priorities. APHON’s work with our advocacy partners and coalitions has resulted in some big wins that will lead to great progress in the area of childhood cancer.

The Childhood Cancer Survivorship, Treatment, Access, and Research (STAR) Reauthorization Act was passed and signed into law by President Biden on January 5. The current law and funding authorization remains in effect through 2023, the newly passed version reauthorizes the programs in the STAR Act for an additional 5 years and expands opportunities for childhood cancer research, improves childhood cancer surveillance, and improves the quality of life for survivors. Passage of this bill was an advocacy priority for APHON in conjunction with the Alliance for Childhood Cancer.

Additionally, many of APHON’s priorities were funded as part of the $1.7 trillion fiscal year 2023 (FY23) omnibus funding agreement signed into law by President Biden on December 29, 2022.

Pediatric Cancer Related Programs:

The STAR Act received $30 million, and the Childhood Cancer Data Initiative (CCDI) received $50 million for FY23—full funding for both programs
The National Institutes of Health (NIH) received $47.5 billion for FY23, an increase of $2.5 billion over FY22
The National Cancer Institute (NCI) received $7.1 billion for FY23, an increase of approximately $190 million over FY22
Advanced Research Projects Agency for Health (ARPA-H) was funded with $1.5 billion
The Gabriella Miller Kids First Research Act received $12.6 million for FY23
The Peer Reviewed Cancer Research Program (PRCRP) received $130 million for FY23, which is the same level as FY22. The PRCRP includes each research category the Alliance requested in our FY23 Department of Defense letter: pediatric, adolescent, and young adult cancers; pediatric brain tumors; neuroblastoma; sarcoma; germ cell cancers; blood cancers; lymphoma; and thyroid cancer.

Nursing Programs:

$300.5 million for Title VIII Nursing Workforce Development Programs, which is a $20 million increase over FY22 levels
Nearly $200 million for the National Institute of Nursing Research, a $16.8 million increase over FY22 enacted levels. These funds are part of the nearly $47.5 billion in funding noted above for the National Institutes of Health (NIH).

These year-end successes are incredibly important as we work with our coalition partners to ensure continued progress. We thank Congress and the Biden-Harris administration for their ongoing commitment to these efforts. APHON remains committed to moving our advocacy agenda forward as the 118th Congress begins its work, and the voices of our members are vital to these endeavors.

APHON Participates in Webinar on NCI’s Molecular Characterization Initiative

APHON was recently invited to participate in a webinar on the National Cancer Institute’s (NCI) Molecular Characterization Initiative. APHON joined the Oncology Nursing Society (ONS) and the Hematology/Oncology Pharmacy Association (HOPA) in developing the webinar, Childhood Cancer Data Initiative – Molecular Characteristic Initiative. APHON was represented by Katherine Donahue, MS RN CPNP CPHON^®, chair of APHON’s Advocacy Committee.

The Molecular Characterization Initiative, part of NCI’s Childhood Cancer Data Initiative (CCDI), aims to provide the best possible molecular diagnostic information to children, adolescents, and young adults (AYAs) diagnosed with cancer, while also generating data that will help children and AYAs with cancer in the future. All children and AYAs with cancer deserve the best cancer care. The CCDI Molecular Characterization Initiative’s diagnostic testing will offer a critical first step in the cancer journey. The CCDI Molecular Characterization Initiative will provide tumor DNA and RNA analysis free of charge to children and AYAs to enable a precise diagnosis. Conducting this analysis rapidly and returning results to oncologists and their patients can directly inform treatment decisions, including participation in clinical trials. It also has the potential to transform how childhood cancers are diagnosed and treated.

Cancer Moonshot Initiative Highlighted in State of the Union

President Biden, during his State of the Union Address on February 7, again spoke about the Cancer Moonshot Initiative, which has a goal of reducing cancer deaths by 50 percent over the next 25 years and improving the experience of individuals, families, and caregivers living with and surviving cancer. During the speech, President Biden talked about a4-year-old girl and her parents who have been fighting a rare kidney cancer, bringing awareness to the many issues families face when they are dealing with a child’s cancer diagnosis.

The President will also be calling on Congress to reauthorize the National Cancer Act, which created the National Cancer Institute more than 50 years ago. The intention of the reauthorization is to update the nation’s cancer research and care systems, including standing up clinical trial networks, creating new data systems that break down silos, and ensuring that knowledge gained through research is available to as many experts as possible. The administration also hopes to maintain the strong investment in cancer research that passed in 2016 as part of the 21st Century Cures Act. That funding expires this year.

On the one-year anniversary of the relaunch of the Cancer Moonshot Initiative, President Biden announced several new initiatives intended to reduce cancer deaths and provide additional supports to children and families who are receiving treatment. To address childhood cancers, the National Cancer Institute (NCI) will launch a public/private partnership to bring clinical and patient navigation support to families facing childhood cancer: Childhood Cancer – Data Integration for Research, Education, Care, and Clinical Trials (CC-DIRECT). Through this initiative, families seeking support can be connected to excellent care and the opportunity to participate in research through clinical trials and data-sharing initiatives.

Additionally, the Health Resources and Services Administration (HRSA) is awarding $10 million to improve access to lifesaving cancer screenings and early detection including patient navigation support services. You can find information on the multiple initiatives announced by the White House on this fact sheet.

Biden Administration Announces End of COVID-19 Public Health Emergency

On January 30, the Biden Administration announced its intention to end the COVID-19 public health emergency (PHE) on May 11. The announcement aligns with the Administration’s previous commitment to provide at least 60 days’ notice prior to termination of the PHE. This will end most the Medicare and Medicaid waivers and flexibilities that were established at the start of the PHE. However, the existing telehealth flexibilities for Medicare will not be impacted due to legislation that was signed keeping telehealth flexibilities in place until December 2024. States always had the ability to cover telehealth services, even prior to the PHE, and that ability continues after it ends. The US Department of Health and Human Services (HHS) released a PHE Transition Roadmap Fact Sheet as well as updates to CMS’ Emergencies Pages, CMS “What Do I Need to Know?” factsheet, and provider-specific factsheet on COVID-19 waivers and flexibilities.

APHON Sends Letter to FDA

APHON sent a letter to the US Food and Drug Administration (FDA) to express concerns regarding a clinical hold for two trials the Children’s Oncology Group (COG) is conducting for standard risk and relapsed acute lymphoblastic leukemia (ALL), AALL1731 and AALL1821. The FDA has disallowed the delivery of 72- and 96-hour IV bags of blinatumomab to newly diagnosed patients enrolling in AALL1731 and AALL1821 due to safety concerns. This hold does not allow for new patients to be enrolled in these trials, potentially impacting their outcomes. APHON also partnered with the Alliance for Childhood Cancer on a letter to the FDA expressing these same points.

APHON Supports the Improvement of Pediatric Reference Intervals

APHON joined 32 other organizations in signing a letter to the US House and Senate Appropriations Subcommittees on Labor, Health, and Human Services, Education, and Related Agencies to urge the provision of funding to the Centers for Disease Control and Prevention (CDC) to improve pediatric reference intervals. While reference intervals for adults are generally reliable, there are inconsistencies and large gaps in the ranges provided for children. Accurate pediatric reference intervals would improve care quality and equity for children.

APHON Continues Support of PCHETA

Along with the Patient Quality of Life Coalition (PQLC), APHON submitted a letter to the Senate Health, Education, Labor, and Pensions (HELP) Committee urging consideration of the Palliative Care and Hospice Education and Training Act (PCHETA). This letter was in response to the HELP Committee’s public hearing on healthcare workforce shortages. Legislators focused on the nationwide healthcare professional shortage among nurses, doctors, dentists, and mental health services providers. You can view the full hearing, Examining Health Care Workforce Shortages: Where Do We Go From Here?, on the HELP Committee web page.

APHON Joins NCC to Welcome 118th Congress and Outline Priorities

APHON, along with the 63 other organizations of the Nursing Community Coalition (NCC), sent letters to all members of the US House and Senate in the 118th Congress which outline our shared priorities of investing in the Title VIII Nursing Workforce Development programs and supporting nursing research. NCC continues to work to ensure that the nation’s nurses have the resources needed to build a more equitable healthcare system.