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Advocacy/Health Policy

dcimageAPHON is committed to ensuring that pediatric hematology/oncology nurses are provided with the latest information on pending legislative and regulatory issues and activities impacting the profession and patients. For more information, view our health policy agenda or contact us at This email address is being protected from spambots. You need JavaScript enabled to view it.

 

Legislative Action Center

The APHON Legislative Action Center provides federal and state legislative information about pediatric hematology/oncology patient care and nursing. Get involved by staying informed and taking action!

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Advocacy Correspondent

A quarterly offering from the Association of Pediatric Hematology/Oncology Nurses, the newsletter's goal is 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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Sign-On Letters

Sign-on letters are policy-oriented letters sent to Congress members, congressional committees, or federal agencies expressing the signatories' viewpoint.

Title VIII, STAR Act, Cancer Drug Parity, PCHETA, Sickle Cell, and Other Key Legislation

Letter to Senators Outlining Shared NCC Build Back Better Act Priorities, Including the FAAN Act

December 2, 2021

APHON joined the Nursing Community Coalition (NCC) letter strongly urging the Senate to preserve shared nursing priorities, including support for nursing education pathways such as the Future Advancement of Academic Nursing (FAAN) Act in the Build Back Better Act.

View the supporting letter

Sickle Cell Disease Partner Letter to Champions in Congress

September 29, 2021

APHON joined the American Society of Hematology (ASH), the American Society of Pediatric Hematology/Oncology (ASPHO), and other sickle cell disease (SCD) partners and sent a letter to Representatives Danny Davis (D-IL-7) and Michael Burgess, MD, (R-TX-26) and Senators Cory Booker (D-NJ) and Tim Scott (R-SC) to advocate for the development of a Medicaid demonstration project focused on SCD.

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APHON and PQLC Send Letter to House and Senate Leaders on PCHETA

September 15, 2021

APHON signed on the Patient Quality of Life Coalition (PQLC) letter to House and Senate leaders supporting the request from Senator Tammy Baldwin (D-WI) and Representative Yvette D. Clarke (D-NY-9) to support the bipartisan Palliative Care and Hospice Education and Training Act (PCHETA). The letter encourages Congress to use PCHETA as a model to grow, improve, and sustain the palliative care and hospice workforce in the upcoming reconciliation package.

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APHON Meets with the Biden-Harris Administration and Provides Input to the NIH on ARPA-H

August 23, 2021

APHON and the Alliance for Childhood Cancer met with the Biden-Harris Administration to discuss the Advanced Research Projects Agency for Health (ARPA-H) as it is being developed. ARPA-H would be a new agency intended to drive transformational innovation in biomedical research that has been proposed by President Joe Biden. In addition to the meeting, APHON provided specific input to the National Institutes of Health (NIH) as well.

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APHON Sends Gabriella Miller Kids First Research Act 2.0 Endorsement Letter to Senate

July 7, 2021

APHON and the Alliance for Childhood Cancer continued their support for the bipartisan Gabriella Miller Kids First Research Act 2.0 and sent an endorsement letter to the Senate. The letter thanked Senators Tim Kaine (D-VA), Bill Cassidy (R-LA), Mark Warner (D-VA), and Jerry Moran (R-KS) and emphasized the importance of authorizing continued resources to improve childhood cancer treatments.

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APHON Contributes to Letter to Congress on Home and Community-Based Services

April 26, 2021

In response to a request from the Senate Aging Committee, APHON contributed to a letter with the Patient Quality of Life Coalition to leaders in Congress regarding stakeholder input on a draft of the Home and Community-Based Services Access Act. The act would ensure Medicaid can provide critical services, creating national requirements for home and community-based services, and make it possible to enhance those services and the long-term care workforce.

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APHON and PQLC Send PCHETA Letter to Senate HELP Committee

April 9, 2021

APHON signed on to the Patient Quality of Life Coalition (PQLC) letter requesting that the Palliative Care and Hospice Education and Training Act (PCHETA) be included in the workforce package being developed by the Senate Health, Education, Labor, and Pensions (HELP) Committee.

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APHON Endorses the Gabriella Miller Kids First Research Act 2.0

March 31, 2021

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 and use the money to fund critical rare pediatric disease research.

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APHON Endorses the RISE Act

March 15, 2021

APHON signed on to the Alliance for Childhood Cancer letter supporting the Research Investment to Spark the Economy (RISE) Act.

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APHON Reiterates COVID-19 Priorities Including the FAAN Act

February 25, 2021

APHON signed on to the Nursing Community Coalition letter to Congress reiterating COVID-19 priorities, which includes additional nursing education infrastructure through the Future Advancement of Academic Nursing (FAAN) Act.

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APHON Welcomes 117th Congress

January 29, 2021

With the Nursing Community Coalition (NCC), APHON sent letters to the Senate and House welcoming the 117th Congress and outlining our shared priorities to combat COVID-19, invest in Title VIII Nursing Workforce Development programs, and support nursing research.

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APHON and NCC Congratulate Chairwoman DeLauro on her Leadership of the House Appropriations Committee

January 29, 2021

APHON signed on to the Nursing Community Coalition (NCC) letter congratulating Chairwoman Rosa DeLauro (D-CT-03) on her election as House Appropriations Committee Chair and looks forward to working with her again on issues relevant to nursing and healthcare.

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Health and Justice

APHON and NCC Urge House Veterans' Affairs Committee to Advance the US Cadet Nurse Corps Service Recognition Act

September 14, 2021

Fifty-three members of the Nursing Community Coalition (NCC) signed onto a letter to the House Veterans’ Affairs Committee urging them to support and advance the US Cadet Nurse Corps Service Recognition Act of 2021.

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

August 26, 2021

APHON published a letter in the Atlanta Journal-Constitution with the American Society of Hematology (ASH), the Sickle Cell Disease Association of America (SCDAA), and 14 other major health organizations highlighting the impact of recently enacted voting restrictions in Georgia, which are expected to disproportionately affect minority communities.

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APHON Named as Endorser of US Cadet Nurse Corps Service Recognition Act in Senate Press Release

May 28, 2021

Senators Bill Cassidy (R-LA) and Elizabeth Warren (D-MA) recently reintroduced the US Cadet Nurse Corps Service Recognition Act, a bill that honors women who served in the US Cadet Nurse Corps during WWII with honorary veteran status. We are proud to share that APHON was named as an endorser, alongside several other nursing organizations, in a press release announcing the reintroduction of the bill. APHON has endorsed this bill since last Congress.

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

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Leading Cancer Organizations Endorse Goal of Resuming Cancer Screening and Treatment during the COVID-19 Pandemic

January 28, 2021

APHON is teaming up with the National Comprehensive Cancer Network® (NCCN®), the American Cancer Society (ACS), and other leading cancer organizations and cancer centers across the country to endorse the resumption of cancer screening and treatment during the ongoing COVID-19 pandemic.

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Government Funding and Research

APHON and PQLC Send Letters to the NINR and NIH to Advocate for Palliative Care

December 13, 2021

APHON signed on to two letters with the Patient Quality of Life Coalition (PQLC) in an effort to get the National Institute of Nursing Research (NINR) to reconsider and keep palliative care as a strategic priority in the NINR 2022-2026 Strategic Plan. One letter was in direct response to the NINR’s request for feedback from the public and the other was a letter to Francis S. Collins, MD PhD, National Institutes of Health (NIH) Director

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CDC Letter on LDTs with AACC

November 2, 2021

APHON signed on to the American Association for Clinical Chemistry (AACC) letter to the Centers for Disease Control and Prevention (CDC) on the regulation of laboratory-developed tests (LDTs), including pediatric LDTs.

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Senate Resolution on DIPG Awareness Day

August 23, 2021

APHON and the Alliance for Childhood Cancer sent a letter thanking Senators Marco Rubio (R-FL) and Jack Reed (D-RI) for introducing and working to pass the Senate resolution to designate May 17 as DIPG Awareness Day. This raises awareness and encourages research into cures for diffuse intrinsic pontine glioma (DIPG) and pediatric cancers in general.

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Congratulations to the CMS Administrator

June 21, 2021

The Nursing Community Coalition (NCC) sent a congratulations letter to Chiquita Brooks-LaSure, who was confirmed as the Administrator of the Centers for Medicare and Medicaid Services (CMS).

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APHON Joins AACR in Sending Letter Supporting National Cancer Research Month

May 27, 2021

APHON signed on to American Association for Cancer Research’s (AACR) letter thanking Senators Dianne Feinstein (D-CA) and Shelley Moore Capito (R-WV) for their resolution recognizing May as National Cancer Research Month. This year marks the 50th anniversary of the National Cancer Act of 1971.

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APHON and NCC Submits Testimony to House Appropriations Subcommittee

May 6, 2021

APHON signed on to the Nursing Community Coalition’s (NCC) written testimony submitted to the House Appropriations Subcommittee on Labor, Health and Human Services, Education, and Related Agencies (LHHS-ED). The testimony featured the coalition's funding requests of $530 million for the Title VIII Nursing Workforce Development Programs and $193 million for the National Institute of Nursing Research (NINR) for FY 2022.

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APHON, LLS, and Over 100 Health Organizations Send CAPs Letter to Congressional Health Leaders

April 26, 2021

APHON and over 100 health organizations joined in sending a letter organized by the Leukemia & Lymphoma Society (LLS) to leaders on the Senate and House Appropriations Subcommittees on Labor, Health and Human Services, Education, and Related Agencies (LHHS-ED) supporting Consumer Assistance Programs (CAPs). Established under the Affordable Care Act, CAPs help consumers handle problems with their health insurance to increase insurance coverage and expand access to care.

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APHON and the Alliance Send Letters to Congress Supporting PRCRP at the DOD

April 14, 2021

APHON continued its support for the Peer-Reviewed Cancer Research Program (PRCRP) at the Department of Defense (DOD) through the Alliance for Childhood Cancer (Alliance).

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APHON and the Alliance Send Letters to Congress Supporting Vital NIH and NCI Funding, Including the Childhood Cancer STAR Act and CCDI

April 14, 2021

APHON continued its support for vital National Institutes of Health (NIH) and National Cancer Institute (NCI) funding through the Alliance for Childhood Cancer (Alliance). This support includes advocating for full funding for the Childhood Cancer Survivorship, Treatment, Access, and Research (STAR) Act at $30 million and the Childhood Cancer Data Initiative (CCDI) at $50 million in FY 2022.

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APHON Supports Federal Sickle Cell Disease Programs

March 19, 2021

APHON has joined the American Society of Hematology and other fellow Sickle Cell Disease Coalition organizations in signing on to a letter to Congress requesting funding for federal sickle cell disease programs at the Centers for Disease Control and Prevention and the Health Resources and Services Administration.

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APHON Urges House and Senate Subcommittees on LHHS-ED to Fund Title VIII and NINR

March 16, 2021

APHON signed on to the Nursing Community Coalition letter to the House and Senate Appropriations Subcommittees on Labor, Health and Human Services, Education, and Related Agencies (LHHS-ED) outlining the funding request levels of $530 million for Title VIII Nursing Workforce Development Programs and $193 million for the National Institute of Nursing Research (NINR) for FY 2022.

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APHON Supports Funding for Pediatric Reference Intervals

February 17, 2021

APHON signed on to a letter led by the American Association for Clinical Chemistry which supports funding to help generate pediatric reference intervals from existing clinical samples at the Centers for Disease Control and Prevention.

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Access Archived Sign-On Letters

Coalitions

Many times, the best way to make an impact with a broad audience is to partner with a coalition that can help advance our priority issues. APHON belongs to the following coalitions:

alliancechildhoodcancer 100x78coaliationforclinicaltrialslogoIPN 150x44nursingorgalliance 150x37patientqollogoSickle Cell Disease Coalition LogoCAC2 logo

APHON is also an active member of the Nursing Community Coalition which is comprised of 63 national professional nursing associations.