APHON and ONS Health Policy Legislative Conversation Featuring Senator Baldwin and Representative Underwood

On November 29, APHON and the Oncology Nursing Society (ONS) hosted an event that focused on overcoming new COVID-19 challenges by strengthening the nursing workforce and palliative care education and training. Remarks from Senator Tammy Baldwin (D-WI) and Representative Lauren Underwood, RN, (D-IL-14) were featured, and each legislator expressed the importance of supporting the Future Advancement of Academic Nursing (FAAN) Act and the Palliative Care and Hospice Education and Training Act (PCHETA).

A panel of APHON and ONS leaders had a robust legislative conversation on these topics and encouraged attendees to become nursing advocates and support both pieces of legislation.

Nursing Professional Panelists

  • Jennifer Backes, MSN RN AGCNS, ONS Southeastern Wisconsin Chapter President
  • Darcy Burbage, DNP RN AOCN® CBCN®, ONS National Board Director
  • Joan O’Hanlon Curry, MS RN CPNP CPON®, APHON Immediate Past President
  • Marge Karas, MSN RN OCN® CMSRN®, ONS State Policy Liaison
  • Amy Newman, PhD RN CPNP-PC CPHON®, APHON Director-at-Large

The event was organized and co-led by Dominic Sawaya, JD MPPA, APHON Manager of Health Policy and Advocacy, and Alec Stone, MA MPA, ONS Public Affairs Director.


Palliative Care Resources from Together at St. Jude Children’s Research Hospital

In honor of November having been National Hospice and Palliative Care Month, APHON is sharing palliative care resources and information for childhood cancer patients through Together, which is powered by St. Jude Children’s Research Hospital.


APHON and PQLC Advocate for Palliative Care at the NINR and NIH

The National Institute of Nursing Research (NINR) has long been a partner in palliative care research and in advancing treatment. The NINR, currently in the process of creating the NINR 2022–2026 Strategic Plan, has released the draft framework and invited public commentary. Unfortunately, the current draft of the strategic plan eliminates palliative care.

APHON signed on to two letters with the Patient Quality of Life Coalition (PQLC) in an effort to get the NINR to reconsider and keep palliative care as a strategic priority. One letter responded directly to the NINR’s request for feedback, and the other letter was addressed to Francis S. Collins, MD PhD, Director, National Institutes of Health (NIH). APHON continues to advocate for palliative care, which should be part of the genome of NIH and NINR investment and biomedical research as a whole.

APHON Supports Biden’s OSHA COVID-19 Vaccine Requirement

Ezekiel J. Emanuel, MD PhD, of the University of Pennsylvania and former advisor to President Joe Biden, contacted APHON regarding support for President Biden’s COVID-19 vaccine rules for businesses from the Occupational Safety and Health Administration (OSHA). APHON signed on to the joint statement, which is supported by more than 60 major health organizations, including the American Academy of Pediatrics, the Association for Clinical Oncology, the American Society of Hematology, and the American Society of Pediatric Hematology/Oncology.

This step is a continuation of APHON’s support for COVID-19 vaccine requirements. The statement received widespread coverage in the national media, including The Washington Post and USA Today. APHON continues to advocate for vaccinations, which protect individuals from illness and hospitalization.

Bipartisan Sickle Cell Comprehensive Care Act Introduced in Congress

In December, Representatives Danny Davis (D-IL-7) and Michael Burgess, MD, (R-TX-26) introduced the Sickle Cell Disease Comprehensive Care Act (H.R. 6216) in the House to improve access to comprehensive high-quality outpatient care for individuals who are living with sickle cell disease (SCD) and are enrolled in Medicaid. On the Senate side, Senators Cory Booker (D-NJ) and Tim Scott (R-SC) introduced companion legislation (S. 3389).

The American Society of Hematology (ASH) has worked through the ASH Sickle Cell Disease Initiative with members of Congress for several years to continue to educate them and their staffs on the lack of high-quality care for many individuals with SCD. APHON has participated in this outreach to Congress and in September joined ASH in sending a letter supporting the development of a Medicaid demonstration project through the Centers for Medicare and Medicaid Services to Representatives Davis and Burgess and Senators Booker and Scott. APHON celebrates this significant progress on hematology advocacy.

Resolution Raising Awareness of Sickle Cell Disease Passed by the Senate

The Senate unanimously passed a resolution by Senators Cory Booker (D-NJ) and Tim Scott (R-SC) designating September 2021 as Sickle Cell Disease Awareness Month. This official designation helps raise awareness with the goal of improving access to care. Read the December 14 press release.

Congressional Briefing on Sickle Cell Disease and Reproductive Health Care for Women

APHON leaders and advocates attended a virtual congressional briefing in October, Their Lives Depend on Us: Rising to the Challenge of Providing High Quality, Evidence-Based Reproductive Health Care for Women with Sickle Cell Disease. The briefing presented information on the current state of reproductive health care for women with sickle cell disease (SCD) and several policy strategies for improving SCD outcomes. APHON was invited through its involvement with the American Society of Hematology and the Sickle Cell Disease Association of America. This hematology issue will continue to be monitored as legislation and other policy strategies are considered.