CONGRESSWOMAN ELISE STEFANIK
On Tuesday, December 6, 2016, the House will consider H.R. 3381, the Childhood Cancer Survivorship, Treatment, Access, and Research (STAR) Act, under suspension of the rules. H.R. 3381 was introduced by Rep. Michael McCaul (R-TX) on July 29, 2015, and was referred to the House Committee on Energy and Commerce.
H.R. 3381expands opportunities for childhood cancer research, improves efforts to identify and track childhood cancer incidences, enhanced the quality of life for childhood cancer survivors, and ensures publicly accessible expanded access policies that provide hope for patients who have run out of options.
Specifically, the legislation expands opportunities for childhood cancer research by authorizing the National Cancer Institute (NCI) to build on existing efforts to collect biospecimens for childhood cancer patients enrolled in NCI-sponsored clinical trials to collect and maintain relevant clinical, biological, and demographic information on all children, adolescents, and young adults with cancer. H.R. 3381 also authorizes grants to state cancer registries to identify and track incidences of child, adolescent, and young adult cancer.
In addition, the bill: enhances research on the late effects of childhood cancers, including a study on insurance coverage and payment of care for survivors; improves collaboration among providers; and establishes a new pilot program to begin exploring innovative models on care.
Finally, the Childhood Cancer STAR Act requires the inclusion of at least one pediatric oncologist on the National Cancer Advisory Board and would improve childhood health reporting requirements to include pediatric cancer.
More than 15,000 children are diagnosed with cancer in the United States every year. One in five of these children don’t survive.
There are a number of existing challenges with childhood cancer patients. According to the National Cancer Institute, there is very little known about the causes of childhood cancers. The types of cancers children develop generally differ from adults and have relatively few genetic alterations. They lack the targets for treatment that have been developed and approved for adult cancers, and clinical trials are increasingly restricted to smaller numbers of patients, making collaboration on research and treatment vital.
According to the bill’s sponsor, “Childhood cancer patients and their families don’t have high-paid lobbyists advocating on their behalf. The Childhood Cancer STAR Act will give them a stronger voice and more resources to combat this deadly disease, which remains the leading cause of death in American children. I am proud of the many activists in the childhood cancer community who were the drivers behind this legislation which reflects their priorities and hard work. I am also grateful to the National Cancer Institute for assisting us with this bill which will build on and strengthen many great efforts underway in government and the private sector to improve research, treatments and care for pediatric cancer patients, survivors, and their families.”
An official Congressional Budget Office (CBO) estimate is not currently available. However, CBO estimates that enacting H.R. 3381 would not affect direct spending or revenues.
For questions or further information please contact Jake Vreeburg with the House Republican Policy Committee by email or at 6-1828.