Long advocates for passage of bill to improve childhood cancer research

Posted on August 29, 2017 10:20 am CDT

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U.S. Rep. Billy Long (R-MO) made the urgent case on Friday for legislation that would step up reporting on childhood cancers and give children access to cancer treatments that are still in development. 

Under the Childhood Cancer Survivorship, Treatment, Access, and Research Act of 2017, or the Childhood Cancer STAR Act, the National Institutes of Health (NIH) would support data collection efforts to help determine the most effective treatments for certain kinds of childhood cancer. 

Also under the bill, the Department of Health and Human Services (HHS) would explore ways to monitor childhood cancer survivors throughout their lives, and to better coordinate care as survivors transition into adult care.

“By the time a child in the U.S. turns 20, one in 285 will be diagnosed with cancer,” Long, a cosponsor of the bill, wrote in his weekly newsletter. “That statistic alone is reason enough to expand research for childhood cancer.”

But a number of challenges exist, including limited resources and a dearth of available research on cancer patients.

“The Childhood Cancer STAR Act would expand the National Cancer Institute’s ongoing research efforts and collect vital information on children participating in clinical trials,” Long said.

More than 95 percent of childhood cancer survivors have a related health issue later in life, Long added, and H.R. 820 would establish a pilot program that would explore the best ways to provide care for cancer survivors as they age. 

“It’s equally important to make sure that childhood cancer is being properly monitored and reported. With limited research, every child matters,” Long said. “This bill would expand upon current efforts by authorizing grants to states to establish cancer registries that will help better track childhood cancer.”

Given that fewer than 10 drugs have been developed for children with cancer in the last 37 years, Long highlighted the importance of a provision that would modify “compassionate use” guidelines so that children could gain access to treatments that are outside of clinical trials. 

“The good news is in the U.S. alone more than 80 percent of children diagnosed with cancer become long-term cancer survivors,” Long said. “I look forward to increasing that percentage by passing bills like the Childhood Cancer STAR Act. I will continue to work with my colleagues to ensure its passage in the House and the Senate and signed into law by the president.”

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