Impact of 2022 Midterm Elections

The November 2022 midterm elections resulted in Democrats retaining the majority in the Senate and a transition of the majority in the House of Representatives from the Democrats to Republicans. With the election over and the 117th Congress ending on January 3, the lame duck session has begun. APHON is working with its coalition partners to move our advocacy agenda forward and work for passage of priority legislation. We are simultaneously working to develop an advocacy strategy for the new Congress that begins in January.

APHON’s year-end advocacy efforts have focused on the Childhood Cancer Survivorship, Treatment, Access, and Research (STAR) Reauthorization Act, the Accelerating Kids’ Access to Care Act, the Sickle Cell Disease Comprehensive Care Act, and the Palliative Care and Hospice Education and Training Act (PCHETA). Advocacy efforts focus on including these bills in a larger year-end package.

APHON is also working with our partners to develop an advocacy strategy for the 118th Congress. APHON will continue to advance our advocacy agenda as bills that do not pass in the lame duck session would need to be reintroduced and new sponsors and cosponsors identified. Many existing congressional members who have championed our priorities will continue to serve in the new Congress, which should result in additional action around our legislative agenda in the new session.

Be on the lookout for emails from APHON regarding future opportunities for our members to participate in our advocacy efforts!

APHON Joins Day of Action to Protect Children

On October 19, 2022, APHON worked with the Leukemia and Lymphoma Society (LLS) and other childhood cancer organizations to participate in a Pediatric Day of Action. This day of action sought to ensure that children with cancer have access to affordable health care and that vital funding for pediatric cancer research continues. Specifically, APHON members reached out to their congressional delegations to get as many cosponsors as possible on the Childhood Cancer STAR Reauthorization Act of 2022 and the Accelerating Kids’ Access to Care Act.

The STAR Reauthorization Act expands opportunities for childhood cancer research, improves efforts to identify and track childhood cancer incidences, and enhances the quality of life for childhood cancer survivors. Reauthorization would extend the bill for another 5 years beyond its 2023 expiration date and ensure Congress continues to provide the $30 million per year currently authorized for these efforts.

The Accelerating Kids’ Access to Care Act would reduce regulatory burdens to allow children with complex medical needs greater access to out-of-state providers who can best meet their needs within the Medicaid program.

This Day of Action was a big success, with APHON members sending 105 messages to members of Congress representing 15 states. Thank you to everyone who helped to ensure the voices of pediatric hematology/oncology nurses were heard.

U.S. House Passes Gabriella Miller Kids First Research Act 2.0

With strong bipartisan support, the U.S. House passed the Gabriella Miller Kids First Research Act 2.0, which was endorsed by APHON. The Act, first signed into law in 2014, established the 10-Year Pediatric Research Initiative Fund and authorized $12.6 million in annual funds for childhood disease research. It also led to the founding of the Gabriella Miller Kids First Data Resource Center, a comprehensive data resource for research and patient communities, meant to advance discoveries. The bill now moves to the Senate for consideration.

APHON Supports Sickle Cell Disease Treatment Centers Act of 2022

APHON has expressed support for the Sickle Cell Disease Treatment Centers Act of 2022. Introduced by U.S. Senators Chris Van Hollen (D-MD) and Corey Booker (D-NJ) and U.S. Representatives Barbara Lee (D-CA-13) and Danny Davis (D-IL-7), this bill would create a national sickle cell disease (SCD) treatment center program. This would include a nationwide network of 120 SCD treatment centers and 100 community-based organizations to support patients and families and provide training to providers and stakeholders. A national center would coordinate the program infrastructure and collect, monitor, and distribute data and best practices. The bill would authorize $525 million a year for 5 years to fund these efforts.

APHON signed on to a letter thanking the sponsors for their efforts on SCD and for increasing access to care for patients. APHON members also contacted their members of Congress to ask for additional cosponsors.

Advocacy Efforts Continue for Passage of PCHETA

The APHON Advocacy Committee continues its active support of the Palliative Care and Hospice Education and Training Act (PCHETA). With our partners at the Patient Quality of Life Coalition (PQLC), APHON committee members sent messages to their senators to urge them to cosponsor the bill and to request it be passed as part of an end-of-year legislative package.

In addition, in addition, APHON sent members a Voter Voice message asking them to contact their senators to increase the voices of pediatric hematology/oncology nurses. You can participate in our advocacy efforts for PCHETA in our Legislative Action Center.

APHON Supports Sickle Cell Disease Quality Measures

APHON signed on to a letter co-authored by American Society of Hematology (ASH) and American Heart Association (AHA) encouraging federal leaders to include two National Quality Forum (NQF) endorsed measures for sickle cell disease (SCD) screening in the Medicaid Child Core Measure Set. The measures are for transcranial doppler ultrasonography screening among children with sickle cell anemia and hydroxyurea use among children with sickle cell anemia.

APHON Participates in the Alliance for Childhood Cancer Fall Meeting

APHON participated in the Alliance for Childhood Cancer’s Fall Meeting in September. The meeting included three presentations that highlighted funding mechanisms for childhood cancer research and the long-term impact of the Childhood Cancer Survivorship, Treatment, Access, and Research (STAR) Reauthorization Act, which APHON has endorsed. Specifically:

  • Donna Kimbark, PhD, health program manager of the Peer Reviewed Cancer Research Program, led an in-person introduction to the current funding mechanisms for pediatric cancer research in the U.S. Department of Defense, a funding mechanism parallel to the National Institutes of Health (NIH) and the National Cancer Institute (NCI) research funding.
  • Malcolm Brenner, MD, PhD, led an NCI STAR Act implementation webinar which reviewed how approximately $30 million in annual funding for the STAR Act has been utilized to promote research in cancer.
  • Brigitte Widemann, MD, special advisor to the NCI director for Childhood Cancer, head of the NCI Pharmacology and Experimental Therapeutics Section, and cochair of the Childhood Cancer Data Initiative (CCDI) Engagement Committee, presented information on implementation of the CCDI molecular profiling program at NCI.

The meeting also included a comprehensive review of legislation that the Alliance is supporting and working to move forward. The two current priorities are the Childhood Cancer STAR Reauthorization Act and the Accelerating Kids’ Access to Care Act. APHON has endorsed both pieces of legislation.

APHON Participates in the Sickle Cell Disease Coalition Annual Summit

APHON attended the Sickle Cell Disease Coalition (SCDC) Annual Summit in September. The summit provided an overview of the SCDC’s guiding principles. Updated SCDC goals are to:

  • Broaden, amplify, and harmonize voices within the sickle cell community to spread sickle cell awareness, engage new stakeholders, and motivate community-centered change.
  • Unite diverse stakeholders and interdisciplinary experts to lead initiatives that improve health outcomes and quality of life across the lifespan for individuals living with sickle cell worldwide.
  • Promote person-centered interventions and shared decision-making related to sickle cell care within health care systems and society at-large.

Working groups have been updating SCDC charters and strategic goals. The five working groups and their goals are:

  • Access to Care Working Group: to improve the physical, mental, and social health of the SCD community, including SCD warriors, their caregivers, and their healthcare providers.
  • Global Issues Working Group: to improve the quality of life for people living with sickle cell and establish an equilibrium across the globe.
  • Research and Clinical Trials Working Group: to enhance the development of treatments and therapies for those living with sickle cell disease (SCD).
  • Blood Donor Diversity Task Force: to enhance the blood supplies available to treat individuals living with SCD.
  • Sickle Cell Trait Task Force: to enhance sickle cell trait (SCT) awareness, combat misinformation and stigma around SCT, ensure informed decision-making around reproductive health, and improve health outcomes for individuals and families impacted by sickle cell.

Additionally, Isaac Odame, MB ChB MRCP (UK) FRCPCH FRCPath FRCPC, discussed the launch of the Worldwide Sickle Cell Disease Coalition, an international public-private partnership that aspires to be the global focal point for efforts to address SCD in low-and middle-income countries. Founded by the World Health Organization (WHO), the World Bank, and U.S. Department of Health and Human Services (HHS), this worldwide coalition seeks to vastly reduce childhood mortality associated with SCD and to significantly improve the lives of those living with the disease in low- and middle-income countries. It brings together a diverse group of stakeholders, including national governments, international organizations, financial institutions, foundations, healthcare providers, patients’ groups, medical organizations, and pharmaceutical companies and other private-sector entities.