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.