APHON Participates in the Alliance for Childhood Cancer Fall Meeting

The Alliance for Childhood Cancer (Alliance) recently held its fall meeting in Washington, DC. The meeting was attended by APHON’s Alliance liaison, Beth Siever, along with other organizational members of the ACC. Following the meeting, the Alliance sponsored an in-person Hill Day.

The meeting included a comprehensive review of all the legislation and appropriations requests that the Alliance is currently supporting and working to move forward with the support of APHON. The Alliance continues efforts to move forward legislation and appropriations requests which would expand research into childhood cancer as well as improve access to care for pediatric cancer patients. The current priorities for the Alliance, all of which APHON has endorsed, are:

• Funding increases for the National Institutes of Health (NIH) and the National Cancer Institute (NCI).
• Continued funding for the Department of Defense’s Peer Reviewed Cancer Research Program (PRCRP); the Childhood Cancer STAR Act, and the Childhood Cancer Data Initiative (CCDI).
• Addressing the current drug shortages of pediatric oncology drugs.
• Accelerating Kids’ Access to Care Act, which would reduce regulatory burdens to allow children with complex medical conditions greater access to out-of-state providers who can best meet their needs.

These funding and legislative priorities were advocated during the Alliance Hill Day, when Alliance organizations participated in more than 20 Congressional meetings. These meetings were used to advocate for additional research and access to care for children with cancer.

APHON Participates in the Sickle Cell Disease Coalition Annual Summit

APHON staff attended the Sickle Cell Disease Coalition (SCDC) Annual Summit this month. This meeting covered diverse topics related to the global treatment of sickle cell disease, including updates and strategy discussions for 5 SCDC working groups, an overview by American Society of Hematology (ASH) and the US Department of Health and Human Services (HHS) on SCD data collection, and sickle cell workforce development initiatives.

The SCDC working groups provided updates on their work and had strategic discussions regarding future work. There are 5 working groups:
• Access to Care Working Group
• Global Issues Working Group
• Research and Clinical Trials Working Group
• Blood Donor Diversity Task Force
• Sickle Cell Trait Task Force

There was a presentation by Dr. Vinita Srivasta – Health Advisor, Ministry of Tribal Affairs (MOTA), Government of India, who provided an overview of India’s national SCD strategy. In early 2023, the Government of India launched a national strategy to comprehensively address SCD throughout the country by 2047. This national effort aims to confront sickle cell as a public health problem in India by investing in increased social awareness, implementation of universal newborn screening and genetic counseling, and a strengthened, specialized health care workforce and infrastructure that facilitates access to care for tribal populations impacted by the disease.

Additionally, the American Society of Hematology (ASH) and the US Department of Health and Human Services (HHS) provided an update on a series of three roundtable discussions that occurred to explore how existing SCD data collection registries can be leveraged to avoid programmatic redundancies, reduce the data burden at participating sites, and maximize access to data. Michelle Davis, PhD, MS presented on the key takeaways from each roundtable and follow-up activities resulting from this roundtable series. HHS has created a working group to identify existing and disparate sources of data that can be linked and mined. There is also work being done to develop SCD consensus minimum data set.

Finally, there was a panel discussion on sickle cell workforce development initiatives. This discussion explored the limited amount of trained workforce of health care providers who are committed to caring for people living with sickle cell and how this creates a major barrier for individuals to access comprehensive, life-saving sickle cell care. SCDC member organizations, Sickle Cell Disease Association of America (SCDAA), International Association of Sickle Cell Nurses and Professional Associates (IASCNAPA), the US Health Resources and Services Administration (HRSA), and ASH, provided high-level presentations on their programs, resources, and services to support education, training, and workforce development for sickle cell providers.

APHON Continues Work on Drug Shortages

Significant drug shortages continue to impact pediatric hematology/oncology pediatricians and their patients. To move critical advocacy efforts on drug shortages forward, APHON continues to be an active participant of the Alliance for Childhood Cancer’s Drug Shortages Workgroup. The 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. Together, these efforts are being utilized to implement a comprehensive advocacy strategy to find both long-term and permanent solutions to the ongoing and repeating drug shortages issues.
Data has been gathered on pediatric chemotherapies and an estimate on an annual cost of providing needed drugs to pediatric cancer patients was developed. Data on the twenty-two most commonly used chemotherapies covering seventeen of the most common types of cancer was compiled and used to develop an estimate of the annual cost to provide these drugs to children in the United States, which is $137 million.

The data collected, along with the information gathered through a provider and patient survey, was used to develop a handout on pediatric drug shortages. This handout was distributed during the recent Congressional Hill visits during the September Alliance for Childhood Cancer Meeting and will continue to be utilized at additional meetings with members of Congress and the Administration as solutions are developed and move forward. This work is to ensure that pediatric cancer patients are not left behind on this vital issue.

APHON Continues to Support the Improving Care and Access to Nurses Act

APHON continues to support the Improving Care and Access to Nurses (ICAN) Act by signing onto a letter to Senate sponsors Senators Jeff Merkley and Cynthia Lummis, who are also co-chairs of the Nursing Caucus. This bill would eliminate barriers to the Medicare and Medicaid programs that prevent APRNs from practicing to the full extent of their training.

APHON Supports Legislation to Expand Access to Care in Medicaid

Along with 19 other organizations of the Alliance for Childhood Cancer, APHON has supported the Accelerating Kids’ Access to Care Act, which would create an alternative opt-in pathway for providers in good standing to enroll in multiple state Medicaid programs, allowing them to provide essential, time-sensitive care to children with special health care needs.

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.

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.

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.

APHON at NIWI 2021

The Nurse in Washington Internship (NIWI) returned in 2021 after being canceled in 2020 because of the COVID-19 pandemic. NIWI 2021 was a virtual event in April, and the Advocacy Committee proudly sent APHON NIWI Scholarship awardees from 2020 and 2021 to the event, in addition to APHON Board of Directors and Advocacy Committee leaders. These APHON members joined fellow nurses and nursing students from more than 30 states to influence health care through the legislative and regulatory processes. They attended informative and educational sessions, learned from expert nursing advocates and government officials, and networked with other nurses. All of these activities culminated in virtual visits with members of Congress.

Childhood Cancer Action Days 2021

On April 27, nearly 300 advocates from 39 states met with close to 200 members of Congress to bring the voice of the childhood cancer community to Capitol Hill. As a member of the Alliance for Childhood Cancer, APHON was a major contributor to Childhood Cancer Action Days 2021 and helped conduct nationwide meetings with representatives and senators.

Led by the Advocacy Committee, APHON members strongly advocated for continued support and funding for the Childhood Cancer Survivorship, Treatment, Access, and Research (STAR) Act (P.L. 115-180). The Childhood Cancer STAR Act was unanimously passed by Congress and became law in June 2018. Congress had provided $30 million each year for the last 3 years to fully fund the programs created by the Childhood Cancer STAR Act. For fiscal year 2022, APHON requested $30 million to fully fund the Childhood Cancer STAR Act for a fourth year.

During the meetings APHON members also advocated for the provision of significant funding increases for the National Institutes of Health (NIH) and the National Cancer Institute (NCI), including $50 million to fully fund the Childhood Cancer Data Initiative (CCDI). Specifically, APHON asked Congress to provide at least $46.111 billion (a $3.177 billion increase) for NIH and to provide $7.609 billion for NCI.

In the House, representatives who were not already members of the Congressional Childhood Cancer Caucus were encouraged to join and help raise awareness of childhood cancer and promote public policies that will improve care, address the health needs of pediatric cancer survivors, encourage collaboration, and facilitate the elimination of cancer as a threat to children.

A Conversation with Senator Kirsten Gillibrand

APHON participated in a legislative meeting with Senator Kirsten Gillibrand (D-NY) on May 24. The meeting, hosted by the Oncology Nursing Society, was attended by several of APHON’s New York members and several APHON leaders.

Senator Gillibrand provided updates on legislation affecting nurses and patients and answered questions from the nursing community. Discussion topics included accessible and affordable health care, nursing workforce issues, education and research priorities, and current and pending federal legislation on COVID-19 that has an impact on healthcare providers. APHON will continue to be in contact with Senator Gillibrand’s office to support related legislation.

World Sickle Cell Awareness Day 2021: Knowledge Is Power!

In collaboration with the Sickle Cell Disease Coalition, APHON participated in the Knowledge is Power! campaign. This campaign celebrated World Sickle Cell Awareness Day on June 19 and shared knowledge and resources with a wide variety of stakeholders to educate and increase awareness of sickle cell disease.

APHON Contacts Senators to Urge Support for SCD Programs

Senator Cory Booker (D-NJ) and Senator Tim Scott (R-SC), champions for individuals with sickle cell disease (SCD), asked their colleagues in the Senate to join them in sending a letter to the Senate Appropriations Committee in support of funding for SCD programs within the Centers for Disease Control and Prevention (CDC) and the Health Resources and Services Administration (HRSA). Through the Legislative Action Center, APHON reached out to our members, requesting that they send messages to their senators asking them to support these important programs by signing the “Dear Colleague” letter from Senators Booker and Scott to the Senate Appropriations Committee. The letter requests a funding level of $25 million for the CDC Sickle Cell Data Collection Program, a population-based system that collects and analyzes longitudinal data about people living with SCD, and $7.205 million for the HRSA Sickle Cell Disease Treatment Demonstration Program, which funds regional SCD grants that support SCD providers in an effort to increase access to high-quality, coordinated, and comprehensive care.

SCDC’s Repository of Global SCD Educational Tools

In order to address care and knowledge gaps related to SCD across the globe, the Sickle Cell Disease Coalition (SCDC) released the Repository of Global SCD Educational Resources. As a member of the SCDC, APHON is excited to share these resources, which include presentation slides and infographics. These resources are applicable to both domestic and international stakeholders and are to be used (with appropriate citations) only for education and training.

APHON Named as Endorser of U.S. Cadet Nurse Corps Service Recognition Act in Senate Press Release

In April Senator Bill Cassidy (R-LA) and Senator Elizabeth Warren (D-MA) reintroduced the U.S. Cadet Nurse Corps Service Recognition Act, and we are proud to share the news that APHON was named as an endorser, alongside several other nursing organizations, in an April 19 press release announcing the reintroduction of the bill. This legislation gives women who served in the U.S. Cadet Nurse Corps during WWII honorary veteran status. Senators Cassidy and Warren recognized APHON’s long-standing support for this bill, which APHON has endorsed since the last congressional session.

APHON signed on to Nursing Community Coalition letters to Senator Warren and Representative Cheri Bustos (D-IL-17) supporting the act. The letters thank a bipartisan group of 40 original cosponsors for reintroducing the act in the Senate and House.

APHON Endorses the Gabriella Miller Kids First Research Act 2.0

APHON and the Alliance for Childhood Cancer endorsed the bipartisan Gabriella Miller Kids First Research Act 2.0 and sent a letter thanking Representatives Jennifer Wexton (D-VA-10), Tom Cole (R-OK-04), Peter Welch (D-VT-At Large), and Gus Bilirakis (R-FL-12) for introducing the legislation. The bill would redirect penalties collected from pharmaceutical, cosmetic, food supplement, and medical device companies that break the law; the money would then be used to fund critical research on rare pediatric diseases. This act supports the Gabriella Miller Kids First Pediatric Research Program (Kids First), which helps researchers discover new insights into the biology of childhood cancer.

In addition, APHON encouraged members to use our Legislative Action Center, which allowed members to directly contact their members of Congress and the White House and request their support for the Gabriella Miller Kids First Research Act 2.0. The Advocacy Committee also encouraged APHON members to sign the Conquer Cancer in Kids petition started by CNN Correspondent Rene Marsh, who on Mother’s Day wrote a poignant article about the loss of her son, Blake, after his battle with brain cancer.

Cancer Moonshot, COVID-19, and Beyond

The Biden-Harris Administration and the 117th Congress present APHON new and distinct opportunities to advocate for the field of pediatric hematology/oncology nursing. We have an opportunity to protect and expand access to health care and research funding and to advance pediatric hematology/oncology, particularly through the Cancer Moonshot, an initiative launched by then-Vice President Biden under President Obama. President Biden is expected to expand upon the Cancer Moonshot’s three ambitious goals: to accelerate scientific discovery in cancer, foster greater collaboration, and improve the sharing of data.

APHON has actively engaged in this advocacy, signing on to letters and participating in various efforts to reach out to the Biden-Harris Administration and Congress on issues of central concern. Notably, APHON signed on to the Nursing Community Coalition’s letter to the House and Senate Appropriations Subcommittees on Labor, Health and Human Services, Education, and Related Agencies outlining the funding requests of $530 million for Title VIII Nursing Workforce Development Programs and $193 million for the National Institute of Nursing Research for FY 2022. APHON also joined the Nursing Community Coalition in letters welcoming the Biden-Harris Administration and reiterating to Congress vital priorities related to nurses’ involvement in meeting the challenges of COVID-19 and future threats to public health.

Among those priorities is passing the Future Advancement of Academic Nursing (FAAN) Act, which includes support for additional nursing education infrastructure. APHON endorsed the FAAN Act in 2020 and endorsed it again when it was reintroduced in the House in 2021 by Reps. Lauren Underwood (D-IL) and Eddie Bernice Johnson (D-TX), nurses and key APHON advocates. The act would invest $1 billion to support nursing education during public health challenges and then beyond to address workforce shortages. Infrastructure would be modernized and research enhanced at schools of nursing across the United States. Passing this act would yield benefits well beyond the current pandemic and help expand and strengthen the nursing workforce.

APHON Supports Federal Sickle Cell Disease Programs

APHON has joined the American Society of Hematology and other Sickle Cell Disease Coalition organizations in signing on to a letter to Congress requesting funding for federal sickle cell disease (SCD) programs at the Centers for Disease Control and Prevention (CDC) and the Health Resources and Services Administration (HRSA). The CDC estimated in FY 2020 that $25 million is needed to fully implement its data collection program; the letter includes this language and requests at least $5 million in FY 2022 to continue to phase in the Sickle Cell Data Collection Program in the currently participating states and allow expansion to additional states. The letter also calls for funding to be maintained in FY 2022 for the HRSA’s SCD Treatment Demonstration Program and SCD Newborn Screening Program.

CDC’s Sickle Cell Data Collection Program Expands from 9 to 11 States

The Sickle Cell Data Collection Program at the CDC expanded from 9 to 11 states in March 2021. The program data, along with a one-page sheet giving information on SCD health disparities, are available on the CDC’s website.

APHON Endorses the RISE Act

APHON signed on to the Alliance for Childhood Cancer’s letter supporting the Research Investment to Spark the Economy (RISE) Act. A bipartisan group of lawmakers—led by Rep. Diana DeGette (D-CO) and including cosponsors Reps. Fred Upton (R-MI), Eddie Bernice Johnson (D-TX), Anna Eshoo (D-CA), and Anthony Gonzalez (R-OH)—supports the legislation. The act provides $25 billion in needed relief to support independent research institutions, public laboratories, and universities across the country and gives them the regulatory flexibility needed to continue their work. This funding will help address major disruptions to research, including pediatric cancer research, caused by the COVID-19 pandemic.

APHON Supports Funding for Generating Pediatric Reference Intervals

APHON signed on to a letter that supports funding to help generate pediatric reference intervals, which are values that assist clinicians in interpreting their patients’ laboratory test results. These are generated from existing clinical samples. More than 30 organizations, including the American Society of Pediatric Hematology/Oncology, signed the letter; the effort was led by the American Association for Clinical Chemistry. The requested funding would help efforts to create more standard reference intervals and make possible more accurate diagnoses for pediatric patients. The CDC supports this initiative and has a plan is place, but it projects that an additional $10 million is needed to begin and advance this vital work. The letter, sent to House and Senate appropriations subcommittees in February, requests funding for FY 2022.