Addressing the ‘S’ in the STAR Act

Childhood cancer survivors face a lifetime of risks and monitoring, as well as many psychosocial and financial challenges. As many of us know, more than 95% of childhood cancer survivors will have a significant health-related issue by the time they are 45 years of age, as either side effects of their cancer or - more commonly - its treatment. As of this year, there are approximately 500,000 childhood cancer survivors in the U.S. As that number continues to grow, so will the need to manage these long-term effects.

Addressing the complicated needs of survivors and their families has been a special focus of Children’s Cancer Cause and is a legacy of our work, harking back to an Institute of Medicine report from 2003. Our program agenda has featured Capitol Hill briefings, survivorship webinars and large-scale conferences, scholarships for survivors, and, more recently, the development of the Stewart Survivorship Initiative which will offer guides, resources, and support.

→ To be among the first to know when the Stewart Initiative is live, add your name here.

Two summers ago, our community celebrated the passage of the Childhood Cancer Survivorship, Treatment, Access & Research Act (STAR Act), the most comprehensive childhood cancer legislation ever introduced. Children’s Cancer Cause championed a number of provisions in the STAR Act that elevate the recognition and integration of survivorship care, one of which was increased research at the National Cancer Institute (NCI).

Another less noticed but critical provision might have been left unfulfilled if not for the follow-up and persistence of Children’s Cancer Cause. One of the challenges facing survivors is the lack of standards in follow-up care. While the Children’s Oncology Group regularly publishes a set of guidelines, they are sometimes inconsistently followed by survivorship clinics. Healthcare providers recognize barriers to care but struggle to avoid or mitigate these disparities. Children’s Cancer Cause had successfully advocated for a provision in the STAR Act to have this addressed.

However, the final language suggested that the Secretary of the Department of Health and Human Services (HHS) “may” establish survivorship standards – and it was unclear if that was going to happen. Consequently, Children’s Cancer Cause recruited several Members of Congress to successfully urge HHS to begin this process. We thank Senators Jack Reed, Chris Van Hollen, Shelley Moore Capito, Johnny Isakson, and Representatives Michael McCaul, G.K. Butterfield, Jackie Speier, and Mike Kelly for their leadership on the STAR Act and around this specific provision.

This effort resulted in the HHS Secretary directing NCI to begin the process. Now funding has been provided to the Agency for Health Research & Quality (AHRQ) to conduct an assessment of childhood cancer survivorship programs to give NCI the means of finally establishing definitive standards. This assessment will explore the disparities and barriers to survivorship care and the proposed strategies for addressing those barriers. Our Founder Susan Weiner has been enlisted as a “Key Informant” to inform the work around this initiative.

→ AHRQ Research Protocol: Disparities and Barriers for Pediatric Cancer Survivorship Care (6/24/20)

Because of this accomplishment, childhood cancer survivors will one day soon have improved access to consistent, comprehensive, and effective long-term follow-up care. We extend gratitude to our Congressional champions, HHS leadership, and all of you - our partners, supporters, and advocates - for working together to launch this important survivorship work.