The STAR Reauthorization Act Will Impact Care Through the Rest of This Decade and Beyond
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The signing into law of the Childhood Cancer STAR Reauthorization Act early this year is a major victory for the childhood cancer community. It will impact the future of pediatric cancer research and the delivery of care for the rest of this decade and beyond.
Reauthorizing this landmark legislation for five more years enables STAR (which stands for Survivorship, Treatment, Access, and Research) programs to continue making a life-saving impact for the 16,000 children in the U.S. who are diagnosed with cancer every year - and the more than 500,000 survivors who face a lifetime of health challenges due to their treatment. Children’s Cancer Cause helped draft the original legislation (at the time, the largest childhood cancer legislation ever enacted) and chaired the Alliance for Childhood Cancer’s survivorship workgroup, which was instrumental in drafting the survivorship provisions within the recently enacted STAR Reauthorization Act.
This legislation expands opportunities for childhood cancer research, improves efforts to identify and track childhood cancer incidences, and enhances the quality of life for childhood cancer survivors. Studies show that by age 50, more than 99 percent of childhood cancer survivors have had a chronic health problem, and 96% have experienced a severe or life-threatening condition caused by the toxicity of the treatment they received.
Since being signed into law in 2018, the STAR Act has delivered over $120 million to boost childhood cancer research and bolster data collection, with another $30 million secured for this fiscal year. This reauthorization ensures that progress into promising research will continue and expand in the coming years.
We’re pleased that the new law continues to put an emphasis on childhood cancer survivorship and includes provisions to implement pilot programs supporting the development of model systems of survivorship care. The bill gives the Secretary of Health & Human Services (HHS) authority to make awards for pilot programs to develop, study, or evaluate approaches for monitoring and caring for childhood cancer survivors.
Additionally, the bill specifies that STAR pilot program funds may be used to design tools to use health information technology to improve the transfer of treatment information and care summaries between health care providers and childhood cancer survivors. In other words, this means that we will have new information about best practices around sharing of data electronically as part of the survivorship care planning process.
Advocating for better survivorship policies and advancing survivorship care is an important strategic issue for Children’s Cancer Cause. Pediatric cancer survivors continue to face many obstacles as they transition from oncologic to primary care. It is still common that many completing treatment are not provided a summary of care and a transition plan.
We are committed to build on the work recently done by the National Cancer Institute (NCI) and the Agency for Healthcare Research and Quality (AHRQ) to affect a better systems approach for the survivorship care planning process. The assessment by AHRQ of the barriers and disparities around childhood cancer survivorship programs has resulted in three reports under the first STAR Act. These will better provide the means of establishing definitive standards, and we look forward to the next steps of advancing survivorship care under the reauthorized STAR Act.
The STAR Act is now authorized to receive $30 million annually to continue through fiscal year 2028 - but it still requires Congress to appropriate those funds each year. That’s where we (and you!) come in as advocates and partners in the childhood cancer community, to ensure that these programs receive their full funding year after year. Additionally, we were also delighted to see continued authorization of the Childhood Cancer Data Initiative for $50 million in fiscal year 2023.
To ensure that you’re part of our advocacy efforts in the 118th Congress, please consider joining our Kids Action Network. You’ll receive an exclusive email bulletin each quarter of 2023 with all the latest news, updates, and opportunities in childhood cancer advocacy. Thank you for standing with us to ensure that programs like those funded through STAR continue to have widespread bipartisan support in Congress.