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 117^th 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.

Cancer Initiatives Take the Stage at the State of the Union

President Joe Biden delivered his first State of the Union address on March 1. In this address, President Biden called for a reinvigorated focus on cancer research to “end cancer as we know it.”

APHON thanks President Biden for including cancer research in his State of the Union address. The reignited Cancer Moonshot and childhood cancer initiatives—the Childhood Cancer Survivorship, Treatment, Access, and Research (STAR) Act and the Childhood Cancer Data Initiative (CCDI)—have the potential to end cancer as we know it. APHON is actively advocating for the continued funding and support of each of these ongoing initiatives.

As part of this momentum, APHON joined nearly 100 other cancer organizations in signing a letter urging Congress to fund Cancer Moonshot initiatives. The letter was organized by the American Cancer Society Cancer Action Network and the National Comprehensive Cancer Network. A press release issued on February 28 supported President Biden’s reignited Cancer Moonshot initiative.

Childhood Cancer and Nursing Funding Priorities Signed into Law

Congress passed the $1.5 trillion fiscal year (FY) 2022 omnibus funding agreement, the Consolidated Appropriations Act, 2022, which was signed into law by President Joe Biden on March 15. APHON proudly reports that the appropriations that APHON (along with the Alliance for Childhood Cancer [Alliance] and the Nursing Community Coalition [NCC]) strongly supported were included and have become law.

These childhood cancer–related programs and funding—supported by both APHON and the Alliance—were included in the agreement:

• The Childhood Cancer STAR Act received $30 million, and CCDI received $50 million, which constitutes full funding for both in FY 2022.
• The National Institutes of Health received $45 billion for FY 2022, an increase of $2.25 billion over levels enacted in FY 2021.
• The National Cancer Institute received $6.9 billion for FY 2022, an increase of $353 million over FY 2021 funding. The funding included $194 million for the Cancer Moonshot.
• The omnibus agreement provided $1 billion to create the Advanced Research Projects Agency for Health within the Office of the Secretary in the Department of Health and Human Services. Funding is available for 3 years.
• The Gabriella Miller Kids First Research Act received $12.6 million for FY 2022.
• The Peer Review Cancer Research Program received $130 million for FY 2022, a $15 million increase over FY 2021 funding. The omnibus agreement makes funding available for projects in each of these research categories, as requested by APHON and the Alliance in our joint letter to the Department of Defense: pediatric, adolescent, and young adult cancers; pediatric brain tumors; neuroblastoma; sarcoma; germ cell cancers; blood cancers; lymphoma; and thyroid cancer.

These nursing-specific programs and funding—supported by both APHON and the NCC—were included in the funding allocations:

• Title VIII Nursing Workforce Development programs received $280.472 million, a $16 million increase over levels enacted for FY 2021.
• The National Institute of Nursing Research received $180.862 million, an increase of $5.905 million over FY 2021 funding.

APHON thanks Congress, the Biden-Harris Administration, and our coalition partners for this inspiring progress on the funding of research on childhood cancer and development of the nursing workforce, as well as general nursing research.

Access an overview of the omnibus funding agreement.

APHON’s Participation at PQLC 2022 and Advocacy for PCHETA

As an active member of the Patient Quality of Life Coalition (PQLC), APHON participated in PQLC’s 2022 Annual Meeting in January. The primary purpose of the PQLC is to help ensure that the Palliative Care and Hospice Education and Training Act (PCHETA) becomes law. As part of the meeting, guest speakers from the offices of several PCHETA sponsors were invited: Representatives Yvette Clarke (D-NY-9) and Tom Reed (R-NY-23) and Senators Tammy Baldwin (D-WI) and Shelley Moore Capito (R-WV). Staffers provided a strategic update on progress toward passing this bill in the 117th Congress (2021–2022), the current session.

Following the meeting, APHON collaborated with the PQLC in advocating for PCHETA by working to have it incorporated into a different piece of legislation aimed at preparing for pandemics and strengthening health infrastructure. Specifically, Senate Health, Education, Labor, and Pensions (HELP) Committee Chair Senator Patty Murray (D-WA) and Ranking Member Senator Richard Burr (R-NC) released a discussion draft of the Prepare for and Respond to Existing Viruses, Emerging New Threats, and Pandemics Act (PREVENT Pandemics Act). This bipartisan act focuses on strengthening the nation’s public health, medical preparedness, and response system in the wake of the COVID-19 pandemic.

APHON signed on to the letter to the Senate HELP Committee calling for PCHETA to be included in the PREVENT Pandemics Act. The bill also contains strong mental health provisions, which APHON heartily supports.

APHON Calls on Its Members to Contact Congress to Help End the Nursing Shortage Crisis

The APHON Advocacy Committee, via the Legislative Action Center and VoterVoice, issued a call to action encouraging members to contact Congress about ways to help end the nursing shortage crisis.

This call to action is a grassroots continuation of APHON’s advocacy for the Future Advancement of Academic Nursing Act (S. 246/H.R. 851) and the Senate HELP Committee’s draft legislation, the PREVENT Pandemics Act.

Pilot Sickle Cell Disease Learning Community Launched by ASH Research Collaborative

The American Society of Hematology (ASH) and ASH Research Collaborative have created the Sickle Cell Disease Learning Community, with the goal of improving the course of life and quality of life of those living with sickle cell disease.

The Sickle Cell Disease Learning Community is associated with the James M. Anderson Center for Health Systems Excellence at Cincinnati Children’s Hospital Medical Center and is informed by many stakeholders, including patients, families, clinicians, and scientists.

Congressional Briefing on COVID-19 and Cancer

In early February, APHON advocacy leaders participated in the American Association for Cancer Research’s (AACR) virtual congressional briefing announcing the release of the AACR Report on the Impact of COVID-19 on Cancer Research and Patient Care. The briefing included remarks from Senators Amy Klobuchar (D-MN) and Roy Blunt (R-MO), who underscored both the substantial gains that cancer research has made (thanks to federal funding) and the need for continued advocacy in this area. Lessons learned during the COVID-19 pandemic that can be used to improve cancer research and patient care in the future were also noted during this informative briefing.

Letter to House and Senate Reiterating Funding Requests for Title VIII and NINR

Through APHON’s membership in the Nursing Community Coalition (NCC), APHON signed on to a letter to House and Senate appropriations leaders reiterating vital federal funding requests. The NCC letters urged Congress to include at least $314.472 million for Title VIII Nursing Workforce and Development and at least $200.782 million for the National Institute of Nursing Research (NINR) for FY 2022. This effort continues APHON’s 2021 advocacy for nursing program funding.

September is National Sickle Cell Awareness Month and Childhood Cancer Awareness Month

APHON celebrated National Sickle Cell Awareness Month and National Childhood Cancer Awareness Month throughout September. APHON implemented a month-long social media campaign to raise awareness of issues related to sickle cell disease and childhood cancer. Members can view the campaign on Twitter.

The Advocacy Committee shared legislative successes supporting access to care, treatment, and research as well as opportunities to get involved and advocate for pediatric hematology/oncology nurses, patients, and families impacted by sickle cell disease and childhood cancer.

President Joe Biden issued these essential proclamations supporting the awareness months for sickle cell disease and childhood cancer. APHON applauds the Biden-Harris Administration for making awareness of these issues a national priority.

Letter Published in the Atlanta Journal-Constitution Addressing the Unequal Impact of New Georgia Voter Law

Minority communities that healthcare providers serve will be disproportionately impacted by voter restrictions.

On August 26, APHON published a letter in the Atlanta Journal-Constitution with the American Society of Hematology (ASH), the Sickle Cell Disease Association of America, and 14 other major health organizations highlighting the impact of recently enacted voting restrictions in Georgia, which are expected to disproportionately affect minority communities. The organizations represent more than 21.1 million providers and patients.

APHON is committed to diversity, equity, and inclusion, and part of that commitment extends to protecting the voting rights of patients and families. Legislation similar to the Georgia law has been passed in 17 states as of mid-June. ASH’s August 26 press release about the letter is available here.

APHON Meets with the Biden-Harris Administration on the Development of ARPA-H

In August APHON met with the Biden-Harris Administration to discuss the Advanced Research Projects Agency for Health (ARPA-H) as it is being developed. President Biden has proposed ARPA-H as a new agency intended to drive transformational innovation in biomedical research. The meeting, held with staff from the White House Office of Science and Technology Policy, was organized by the Alliance for Childhood Cancer (Alliance). If created, ARPA-H would exist within the National Institutes of Health (NIH) to carry out the goal of developing breakthroughs that prevent, detect, and treat diseases like Alzheimer’s, diabetes, and cancer.

ARPA-H would be focused on solving specific problems, similar to the high-risk, high-reward research done by the Defense Advanced Research Projects Agency (DARPA). As a health-focused DARPA, ARPA-H has transformative potential.

In addition to the meeting, APHON provided specific input to the NIH. In a letter sent with the Alliance, it was noted that childhood cancer research uniquely depends on the federal government as its primary source of funding, unlike adult cancer where the majority of funding for drug development comes from the pharmaceutical industry.

The Alliance is facilitating additional outreach to help ensure that childhood cancer is included in ARPA-H’s scope of work.

Joint Statement in Support of COVID-19 Vaccine Mandates for All Workers in Health and Long-Term Care

APHON is proud to sign on to a joint statement on COVID-19 vaccine mandates, organized by Dr. Ezekiel Emanuel, who served as a member of President Biden’s COVID-19 Advisory Board. APHON stands alongside the American Nurses Association, the American Medical Association, the American Academy of Pediatrics, and more than 90 other health organizations to support vaccine mandates for healthcare and long-term care personnel. Such mandates protect our patients and help ensure safe access to care.

APHON Joins the ASH Sickle Cell Advocacy Forum

APHON continues to advocate for funding for federal sickle cell disease (SCD) programs in partnership with the American Society of Hematology (ASH). In order to enhance this partnership, APHON joined the newly created ASH Sickle Cell Advocacy Forum. The forum’s work is focused on federal SCD programs including the Sickle Cell Data Collection Program at the Centers for Disease Control and Prevention and the Health Resources and Services Administration’s Sickle Cell Disease Treatment Demonstration Program.

New NHLBI Initiative—Sickle Cell Disease: Research, Programs, and Progress

APHON is excited to share word of the Sickle Cell Disease: Research, Programs, and Progress initiative, which was created by the National Heart, Lung, and Blood Institute (NHLBI) to increase education and awareness and effect positive changes in public health.

Sickle Cell Disease: Research, Programs, and Progress is a resource library and awareness-increasing tool created by the NHLBI. Among its offerings are publications and videos for patients, families, and health professionals. The NHLBI has also included information about research and a variety of fact sheets and handouts that can be shared to increase awareness.

APHON Named in Senate Press Release, Endorses Resolution Designating May as National Cancer Research Month

Senators Dianne Feinstein (D-CA) and Shelley Moore Capito (R-WV) introduced a resolution designating May 2021 as National Cancer Research Month. This effort was initiated by the American Association for Cancer Research, and APHON is excited to endorse the bipartisan resolution.