Policy Letters Written or Signed by Children’s Cancer Cause
118th Congress (2023-2024)
January 2024
A Cancer Leadership Council letter on the Notice of Benefit and Payment Parameters for 2025, offering comments on proposals around insurance options and providing suggestions for additional actions that the Centers for Medicare & Medicaid Services (CMS) should consider to improve access to affordable and adequate insurance for those with cancer and other serious and life-threatening illnesses.
Although we commend CMS for some proposals in the NBPP for 2025 that may improve access to prescription drugs and adequate and affordable insurance through ACA marketplaces, we urge the agency to establish a process to review and update EHBs, a process required by the ACA. We believe that such a process is critically important in light of therapeutic developments that are not reflected in the EHB standards developed years ago.
December 2023
A Children's Cancer Cause letter in support of the Innovation in Pediatric Drugs Act of 2023 (H.R. 6664).
This bill would help speed therapies to children who need them—including children with pediatric cancer and other rare diseases—by making improvements to pediatric drug laws including the Best Pharmaceuticals for Children Act (BPCA) and the Pediatric Research Equity Act (PREA) and by giving authority to the Food and Drug Administration (FDA to ensure that required pediatric drug studies are completed on time.
September 2023
Children's Cancer Cause led efforts to secure endorsement from the Alliance for Childhood Cancer for the Comprehensive Cancer Survivorship Act.
The Comprehensive Cancer Survivorship Act aims to address the entire continuum of care for the estimated 1 in 900 people in the U.S. that are childhood cancer survivors. This legislation also addresses important issues discovered by the Government Accountability Office in their 2020 report, “Survivors of Cancer: Factors Affecting Access to Follow-up Care,” including cancer care and survivorship care planning, employment barriers for survivors and caregivers, and fertility preservation.
July 2023
Children's Cancer Cause joined the National Organization for Rare Disorders (NORD), the Leukemia and Lymphoma Society (LLS), and other public health organizations in a letter supporting the Accelerating Kids Access to Care Act (AKACA). We have also signed on through the Alliance for Childhood Cancer.
Once enacted into law, this legislation will help reduce the time it currently takes children covered by Medicaid or the Children’s Health Insurance Program (CHIP) to access specialized care when providers in their home state cannot address their care needs. … It is a common-sense solution that will reduce burdens on health care providers, facilitate access to critical, time-sensitive treatment, and reduce the risk of care disruption and subsequent negative outcomes.
Children’s Cancer Cause signed on to an Alliance for Childhood Cancer letter endorsing the PREVENT HPV Cancers Act.
Childhood cancer survivors are at risk for developing secondary cancers, making efforts in cancer prevention and awareness especially important for their long-term health. According to the Centers for Disease Control and Prevention (CDC), HPV causes approximately 36,000 cases of cancer in the United States each year, accounting for 3% of all cancers in women and 2% of all cancers in men. The PREVENT HPV Cancers Act would create a national HPV awareness campaign to educate providers, parents, and the public about HPV and the HPV vaccine.
June 2023
Children’s Cancer Cause signed on to an Alliance for Childhood Cancer letter endorsing the Gabriella Miller Kids First Research Act 2.0.
The Gabriella Miller Kids First Act 2.0 will build upon the successes of the original Gabriella Miller Kids First Act, enacted in 2014 and is currently set to sunset in 2023. Further, this legislation will expand the Kids First Program, which supports collaborative research to uncover the genetic etiology of childhood cancer and structural birth defects. The Kids First Program holds promise to facilitate more refined diagnostic capabilities and, ultimately, more targeted therapies or interventions.
March 2023
Children's Cancer Cause submitted public comments to the Senate Homeland Security and Government Affairs Committee in response to a March 2023 report and hearing on the risks posed by a record-high number of drug shortages. The report cites a lack of transparency in the U.S. pharmaceutical supply chain as a key culprit and dives into the cascading effects on patient care that are caused by shortages.
Children are uniquely vulnerable to drug shortages and data suggests they have an impact on survival for patients with cancer. In the last five years, 75% of the 20 most essential pediatric cancer drugs have been in shortage, according to the advocacy group Angels For Change. Not only are pediatric oncology drugs more likely to go into shortage than adult essential therapies, but those shortages last about one-third longer than adult shortages.
We wish to re-iterate and emphasize the earlier recommendations made by the Children’s Oncology Group during the 2019 drug shortage [of vincristine]. As proposed in 2019, solutions that could be enacted in a reasonable time frame for today’s children include but are not limited to: (1) establishment and maintenance of a national stockpile of key cancer drugs used for the treatment of children with cancer, and (2) US government purchasing contracts that provide a guaranteed buyer and may help stabilize a fragile market. There undoubtedly are other ideas to consider, and we are committed to working with lawmakers and the childhood cancer community in galvanizing these efforts.
Children's Cancer Cause signed on to an Alliance for Childhood Cancer letter emphasizing childhood cancer funding priorities for Fiscal Year 2024 appropriations.
We join with the leading national cancer organizations in requesting at least $50.924 billion for National Institutes of Health (NIH) in FY24, including $9.988 billion for cancer research at the National Cancer Institute (NCI).
February 2023
Blinatumomab Clinical Hold: An Alliance for Childhood Cancer letter to the FDA Commissioner expressing concerns about the FDA’s notice of a partial clinical hold for trials AALL1731 and AALL1821, both of which include the delivery of blinatumomab. The letter urges the FDA to work expeditiously with trial sponsors in considering the impact this clinical hold could have on trial participation and accessibility in addition to weighing any safety concerns.
It has come to our attention that the FDA has disallowed the delivery of 72- and 96-hour IV bags of blinatumomab to newly diagnosed patients enrolling in AALL1731 and AALL1821 due to safety concerns. These are two critical trials that the Children’s Oncology Group (COG) is conducting for standard risk and relapsed acute lymphoblastic leukemia (ALL). We agree that the safety of children enrolled in these studies is of the upmost importance, and we are concerned that this decision could lead to new safety risks for children involved in these studies.
Find sign-on letters from previous Congresses here.