Welcome to the Advocacy Correspondent, a quarterly offering from the Association of Pediatric Hematology/Oncology Nurses. This newsletter aims to inform members about legislative and regulatory issues impacting the profession of pediatric hematology/oncology nursing and the patients we serve.
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APHON Advocacy Correspondent
APHON Sign-On Letters
For more information about the various sign-on letters discussed in the Advocacy Correspondent, visit the Advocacy/Health Policy page.
October 20, 2023
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.
JULY 11, 2023
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.
MARCH 28, 2023
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.
- $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.