Roundtable Puts Focus on Improving Cancer Survivorship
On July 14, 2021, several organizations, including Children's Cancer Cause, participated in a virtual roundtable on cancer survivorship convened by Congresswoman Debbie Wasserman Schultz (D FL-23). Representative Wasserman Schultz, a breast cancer survivor, is a leading Congressional champion for the cancer advocacy community, having authored multiple cancer statutes. Currently, Wasserman Schultz is developing a comprehensive draft bill with many legislative specifications aimed at improving survivorship care across the board, for children, adolescents, and adult cancer survivors.
At the roundtable, Congresswoman Wasserman Schultz invited each organization to introduce themselves and then asked a series of structured questions about current needs in the cancer survivorship arena and potential solutions. Children’s Cancer Cause proudly represented children's cancer issues at the event.
During both the presentation section and as part of the questions and answer session, we explained that to adequately care for the estimated half-million Americans who are childhood cancer survivors, we must provide better survivorship care. Caring for a child cancer survivor requires a unique skill set. Many physicians are unaware of these needs, the possible late effects, and other necessary care. Too often, survivors leave active care without a survivorship care plan. In addition, the needs of survivors are often uncovered by the current insurance system or Medicaid. This lack of coverage can lead to large health consequences and late effects that only worsen as the child grows into adulthood. Not only does the United States need to improve physician understanding and knowledge of childhood cancer survivors, but it also needs to cover survivorship care. In short, there is a need for a standard of care in delivering survivorship care to these individuals.
In response, Children’s Cancer Cause reiterated our support for the Child and Adolescent Cancer Survivorship Transition (CAST) Model with the roundtable members. The draft proposal currently has language including our proposed model. This model is a long-time goal of our organization and will serve all children and adolescents under the Medicaid program starting with the prenatal period through age 21.
Representative Wasserman Schultz is still working on the details of the legislation. However, provisions that Children’s Cancer Cause prioritizes and supports, such as the CAST model, care planning services, transition plan tools, alternative payment models, a navigator program, grant programs for innovative models of care, workforce programs, and education and awareness initiatives, are current components of the draft proposal.
We applaud the leadership of Representative Wasserman Schultz on this issue and specifically thank her for recognizing the special needs of childhood cancer survivors and inviting Children’s Cancer Cause to participate in the discussion. We look forward to the bill being introduced this fall, which coincides with Childhood Cancer Awareness Month in September, and we are excited to work with her to help advocate for the need for survivorship legislation and to pass this important bill.
Susan Emmer and Brian Hess of Emmer Consulting are policy consultants to Children’s Cancer Cause.