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.