Research Timeline to be Developed, Long-Standing Research Obstacles Addressed
The following Press Release was issued in time for the holidays to announce Congress and The White House’s gift to children battling brain tumors:
“For more than 25 years, kids with the most common form of brain cancer affecting young Americans have had to undergo highly toxic and largely ineffective treatments because the particular nature of their disease an insidious, slow-growing tumor ֖ has presented unique obstacles to researchers. This weekend, amid the tension and drama of Congress and the White House racing to keep the government funded, they caught a long-overdue lifeline.
Included in the hundreds of pages of legislative jargon in the so-called mini-bus spending measure that was passed and signed by the President on Saturday to keep the government operating is a provision adopting a previously Senate-approved measure that specifically addresses the little-known disease, Pediatric Low-Grade Astrocytoma.
Under provisions that have now been incorporated into law, the National Cancer Institute is directed to accelerate the pace of research into the disease, which is believed to affect upwards of 25,000 American children.
Specifically, the NCI is directed to coordinate the activities of a number of federally-funded public and private organizations currently involved with the disease, and is given one year to develop a specific plan and timeline for research to find more effective and less toxic treatments.
The National Institutes of Health, meanwhile, is directed to focus its attention on two especially thorny challenges that researchers say have confounded their efforts to develop better therapies.
Even though the disease is the most common form of brain cancer affecting children, the numbers of patients are so relatively low and the brain tissue involved is so sensitive ֖ that scientists are often hard-pressed to locate suitable human brain tissue samples for research purposes. At the same time, because the tumor progresses so slowly, laboratory research mice frequently dont survive long enough to teach much about this particular form of cancer.
Under the new law, the NCI is directed to establish research priorities to address both issues, including the creation of incentives so hospitals and medical institutions can better centralize and share the few tissue samples that become available.
“Second only to a cure, what happened today in Washington is the best Christmas present our family could get,” exclaimed Sarah Hamilton of Methuen, Massachusetts, whose 11-year-old daughter, Caroline, was diagnosed with PLGA four years ago and has since undergone 30 months of chemotherapy, 25 blood transfusions and brain surgery.
Andy Hoffman of Atkinson, Nebraska, whose son Jack’s adoption by the Nebraska Cornhuskers football team has inspired Americans across the country and greatly expanded awareness of the disease, added, when your child suffers from this awful disease, you take every glimmer of hope God sends you, and were sure thankful for this one.
A Kids’ Brain Tumor Cure Executive Director Amy Weinstein called the legislation “a major victory that will enable us to redouble our efforts and together with the research community to address the special challenges of this disease with the National Cancer Institute and the National Institutes of Health.”