For many pediatric brain tumor and cancer advocates, like all of us at NBTS and our many volunteers, a main point of frustration is that little progress has been made in the past 30 years in treating children with this disease.
Despite the tremendous fundraising efforts that have taken place, and the best efforts of very talented researchers, the march toward better treatments and cures for pediatric brain tumors continues to be stymied. In fact, no treatment has ever been developed specifically for children with a brain tumor. The treatments given to children diagnosed with a brain tumor were typically developed originally for adults, and even if they are effective in generating a remission, survivors often suffer from the long-term effects that these harsh treatments have on a child’s developing brain.
National Brain Tumor Society was among the authors, and advocated for the introduction of the STAR Act. We believe many of the provisions in the bill will help stimulate more effective pediatric brain tumor research and lead to better treatments that extend life and improve patients’ quality of life:
Improve Pediatric Cancer Surveillance: This section of the bill authorizes grants to state cancer registries, which would better track disease rates in children and help researchers understand trends in pediatric cancer prevalence, incidence, and survival.
Improving Quality of Life and Survivorship: This provision would enhance research on the late effects of childhood cancers, including improving collaboration among providers so that doctors are better able to care for patients as they age, as well as establishing a new pilot program to explore innovative models of care (including psycho-social care) for pediatric cancer survivors.
Expanding Opportunities for Childhood Cancer Research: Due to the relatively small population of children with cancer and geographic distance between these patients, researching pediatric cancer can be challenging. The STAR Act would authorize the National Cancer Institute (NCI) to expand existing efforts to collect biospecimens for childhood cancer patients enrolled in NCI-sponsored clinical trials and maintain relevant clinical, biological, and demographic information on pediatric cancer patients. This would greatly enhance researchers ability to access information and materials they need to conduct key studies.
Requiring Transparency for Expanded Access Policies: The Act would provide more clarity to families regarding the process of seeking compassionate-use waivers (Expanded Access Protocol) for children with brain tumors and other aggressive cancers, so that they can access potentially life-saving treatments outside of clinical trials.
Ensure Pediatric Expertise at the NCI: This provision would require the inclusion of at least one pediatric oncologist on the National Cancer Advisory Board so that it can better address the unique scientific challenges and opportunities facing pediatric cancer research.
NBTS, along with many other childhood cancer advocates, has supported a variety of bills in congress during recent years. Each of the bills had admirable goals and would have helped in the fight, but none were a truly comprehensive approach that could expand research and improve treatment development for pediatric cancers in a way that addressed the key issues holding back progress. The STAR Act – introduced into Congress earlier this year by Congressman Michael McCaul (R-TX), Congressman Chris Van Hollen (D-MD), and Congresswoman Jackie Speier (D-CA) in the House of Representatives, and by Senators Jack Reed (D-RI) and Shelley Moore Capito (R-WV) in the Senate – actually combines many of the best aspects of a number of the previous bills, along with some critical new provisions, into an impactful piece of legislation that would greatly improve efforts within the U.S. to battle pediatric cancers, including brain tumors.
NBTS is committed to driving up Congressional support for the Childhood Cancer STAR Act in Congress so that the bill has the greatest likelihood of successful passage. And YOU can help, too. Let your member of Congress know about the STAR Act and ask for their support. Please also share with us your connection to pediatric brain tumors so we can know better how this legislation might help patients and parents today and tomorrow.
Our Public Policy and Advocacy team will be in Washington, D.C. next week with the Alliance for Childhood Cancer, so stay tuned for updates all next week on the push for better policies to help children diagnosed with brain tumors and cancer!