S 292, the Childhood Cancer Survivorship, Treatment, Access, and Research (STAR) Act of 2018, addresses the maximization of 1) childhood cancer research and 2) the delivery of care for childhood cancer survivors. Here, “childhood cancer” includes cancer in children, adolescents, and young adults.
Portions of this act amend sections of the Public Health Service Act to improve childhood cancer research and survivorship by awarding grants for surveillance and collection of childhood cancer biospecimens, awarding grants for survivor monitoring and assistance programs, and facilitating the development of expertise in clinical and administrative positions. This act has the following amendments and stipulations:
Section 101 — Children’s Cancer Biorepositories and Biospecimen Research
This section amends section 417E of the Public Health Service Act (42 U.S.C. 285a–11), establishing and funding Department of Health and Human Services (HHS) and National Institute of Health (NIH) efforts to facilitate and expand opportunities for research regarding the treatment and prevention of childhood cancers, with respect to the following:
- Awards, Use of Funds, and Criteria for Applicants – Provide $30 million annually (fiscal years 2019 through 2023) in funding and an application process to support:
- Collection and secured storage of biospecimens, clinical data, and demographic data voluntarily provided by patients diagnosed with the country’s hardest to treat childhood cancers; and
- Integration of the biospecimens and data into a publicly available and searchable database to be used by researchers and physicians for research regarding the cause of these cancers, why relapse occurs, and the effects of known cancer treatments.
- Guidelines and Oversight – HHS will determine responsible development, maintenance, and oversight of awarded biorepositories.
- Reports – mandates the HHS to submit a report to Congress within four years regarding:
- Number of data collected and requested resulting from the Childhood Cancer STAR Act;
- Barriers and complications in the collection or access of data; and
- Recommendations for the improvement of provisions under the Childhood Cancer STAR Act.
Section 102 — Improving Childhood Cancer Surveillance
Section 102 of this act amends section 399E–1 of the Public Health Service Act (42 U.S.C. 280e–3a), to provide funding for State cancer registries for the identification of and collection of information regarding childhood cancers, which would eventually be incorporated into a national registry. Such funding may be used for:
- Identification, recruitment, and training of patient data sources (e.g., medical facilities);
- Procedures and infrastructure for quick and easy inclusion of data in State cancer registries by electronic reporting; and/or
- The submission of anonymized biospecimen, clinical, and demographic data to the Center for Disease Control’s (CDC) national registry.
Section 111 — Inclusion of at Least One Pediatric Oncologist on the National Cancer Advisory Board
This section amends clause (iii) of section 406(h)(2)(A) of the Public Health Service Act (42 U.S.C. 284a(h)(2)(A)), which determines the establishment; membership; compensation; and terms of office for advisors to the national research institutes, to ensure at least one member of the National Cancer Advisory Board of that National Cancer Institute (NCI) has professional experience in pediatric oncology.
Section 112 — Sense of Congress Regarding Pediatric Expertise at the National Cancer Institute
This section broadly recommends that the NCI should include pediatric oncologists in “all applicable study sections, committees, advisory groups, and panels”.
Section 121 — Reporting on Childhood Cancer Research Projects
This section requires that childhood cancer research projects conducted or supported by the NIH are included in any appropriate reports to Congress.
Section 201 — Cancer Survivorship Programs
This section enables HHS to give grants for pilot programs to develop, study, and evaluate systems for lifelong monitoring and care of childhood cancer survivors to provide them with more holistic care beyond cancer treatment. This section also requires HHS to review and report on HHS activities related to workforce development for healthcare providers specializing in the treatment of pediatric cancer patients and survivors. This review must assess the effectiveness of psychosocial care services for these individuals and must yield recommendations for improving the provision of such care.
Section 202 — Grants to Improve Care for Pediatric Cancer Survivors
This section amends section 417E of the Public Health Service Act (42 U.S.C. 285a–11), which establishes and funds NIH research on the treatment and prevention of pediatric cancers. Specifically, the section authorizes the NIH to continue funding or supporting research on childhood cancer survivorship to examine aspects like treatment outcomes; barriers to care; the impacts of familial, socioeconomic, and environmental factors; and late effects of cancer treatment and the development of targeted interventions to limit those effects.
Section 203 — Best Practices for Long-Term Follow-Up Services for Pediatric Cancer Survivors
This section allows HHS to identify best practices for pediatric cancer survivorship care and to consult with a variety of medical professionals with expertise in the late effects of pediatric cancer disease and treatment.