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.