Childhood Cancer STAR Act Addresses Research and Survivorship Needs

The number one cause of death in children in the United States is cancer, according to the American Society of Clinical Oncology (ASCO)¹. Fifteen thousand children and adolescents are diagnosed annually.² To address this critically under-researched and underfunded area of cancer, President Trump signed the Childhood Cancer Survivorship, Treatment, Access, and Research Act (STAR Act) into law on June 5, 2018.³ As oncology nurses we should be aware of what the bill entails and how it impacts our patients, even if we don’t work in pediatrics.

The STAR Act aims to empower the National Institute of Health (NIH) with resources to gather specimens from young patients who have been diagnosed with certain cancers for which current treatments are least effective.⁴ This act affects children, teenagers, and young adults. Cancer treatment is not an equal opportunity cure. Some cancers have poor outcomes and this act is intended to shine a spotlight on them.

Nuts and Bolts

The first part of the STAR Act, “Maximizing Research through Discovery,” explains the provisions for biorepositories of specimens from pediatric cancer patients.⁴ Now, at least 1 pediatric oncologist will also be included on The National Cancer Advisory Board.⁴

The second part of the Act, “Maximizing Delivery: Care, Quality of Life, Survivorship, and Caregiver Support,” deals more with funding and discusses grants, survivorship programs, and identifying the gold standard, or best practices, for pediatric cancer survivors who are in long-term remission.

The STAR Act provides for the Center for Disease Control and Prevention (CDC) to monitor certain childhood cancers by supporting registries. The national childhood cancer registry has received grants from the CDC to follow childhood cancers, and funding has been put in place through fiscal year 2022.⁴

What happens to these children and teenagers if they survive chemo and radiation? The Department of Health and Human Services (HHS), has been given a three-fold task concerning survivors of childhood cancer.⁴ The STAR Act calls for pilot treatment programs and a task force to create treatment standards. The STAR Act also incorporates programs for the grey area between adolescence and adulthood.

Time Is of the Essence

HHS has also been charged with the task of creating a Workforce Development Collaborative on Medical and Psychosocial Care for Pediatric Cancer Survivors. Like all cancers, successful treatment options are dependent on early detection. Despite the Patient Protection and Affordable Care Act, in economically deprived segments of the US population, young cancer patients cannot always access the treatment they need to achieve remission on a timely basis.

The Government Accountability Office (GAO) also has been given the task of figuring out how these patients should receive and pay for cancer treatment. The NIH is backing research into this problem as well as looking at the aftermath of cancer treatment. Data shows that two-thirds of survivors will be faced with bad news later in life, which can include new cancers and effects to their organs as a result of the treatment they had in childhood.⁴

More Funds Needed

This act has now become a reality. Despite this, the battle is not over. Cancer organizations are concerned that funding will be inadequate to complete the required tasks that the bill calls for, such as setting up registries for cancer survivors and standards of care.⁵ Offices must be staffed, and the training of employees and the myriad of tasks for setting up a new government entity must be realized. Fundraising is vital at this point.⁵ This is an opportunity to change the way children with cancer survive and live into the future.

References

• Childhood Cancer STAR Act approved by Senate and House. The ASCO Post website. ascopost.com/News/58867. Published May 23, 2018. Accessed June 24, 2018.
• Cancer in children and adolescents. National Cancer Institute website. cancer.gov/types/childhood-cancers/child-adolescent-cancers-fact-sheet. Reviewed August 24, 2017. Accessed June 29, 2018.
• President Donald J. Trump signs S. 292 and S. 1282 into law. The White House website. whitehouse.gov/briefings-statements/president-donald-j-trump-signs-s-292-s-1282-law/. Published June 5, 2018. Accessed June 29, 2018.
• H.R.820 - Childhood Cancer STAR Act. Congress.Gov website. www.congress.gov/bill/115th-congress/house-bill/820. Published June 5, 2018. Accessed June 20, 2018.
• The Childhood Cancer STAR Act passes and is signed into law. St. Baldrick’s Foundation website. www.stbaldricks.org/blog/post/the-childhood-cancer-star-act-passes-and-is-signed-into-law. Published June 5, 2018. Accessed June 24, 2018.