WASHINGTON, DC- Congresswoman Jackie Speier (D-CA) and Congressman Michael McCaul (R-TX) introduce bipartisan legislation to improve and advance the treatment of childhood cancer survivors.
“With advances in research and treatment, more and more Americans are beating their cancer,” Speier said. “But for many children, the fight does not end with remission. With more than two-thirds of childhood cancer survivors experiencing secondary cancers or follow-up complications, it is imperative that we have a strategy to improve their care.”
"As the founder and co-chair of the Childhood Cancer Caucus, I am proud to support this legislation, which is so critical to the lives of hundreds of thousands of childhood cancer survivors," said McCaul. "We cannot adequately fight childhood cancer without addressing the life-long ailments that survivors currently face."
“When the doctors pronounce a child is cured of cancer, the battle to live a happy and normal life is just beginning and can last a lifetime,” said Maureen Lilly, Executive Director of Children’s Cause for Cancer Advocacy. “Children’s Cause for Cancer Advocacy commends Congresswoman Speier and Congressman McCaul for their leadership in addressing the needs of the more than 300,000 survivors of childhood cancer.”
The 5-year cancer survival rate for children has improved from just 56% in 1974 to almost 80% today. While encouraging, more than two-thirds of childhood cancer survivors still experience 'late effects' of the disease or its treatment as they grow older, according to the Institute of Medicine. Secondary cancers, heart and lung damage, osteoporosis, and fertility problems are among the many challenges faced by childhood cancer survivors. Up to one-fourth of these late effects are serious or life-threatening.
H.R. 3015, the Pediatric, Adolescent and Young Adult Cancer Survivorship Research and Quality of Life Act:
• Establishes a pilot program to develop, study, and evaluate model systems of care for childhood cancer survivors and improve coordination between providers
• Establishes grants at the National Institutes of Health to support research on late effects and follow-up care for pediatric cancer survivors
• Convenes a Workforce Development Collaborative on medical and psychosocial care for childhood cancer survivors to develop information for health care educators about evidence based curricula relevant to providing services to pediatric cancer patients
• Establishes grants to create and operate childhood survivorship clinics for comprehensive long-term follow up services for childhood cancer survivors
“This bill would help ensure that those who have bravely struggled and conquered cancer as children have access to the resources and infrastructure they need as the longer term consequences of their illness and often toxic treatments surface, sometimes years down the road,” Speier concluded.
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Click below for bill text and short summary.
The Childhood Cancer Caucus applauds Dr. Harold Varmus, the Director of the National Cancer Institute (NCI), for announcing the appointment of Dr. Greg Aune, a pediatric hematologist-oncologist from The University of Texas Health Science Center at San Antonio, to NCI's Council of Research Advocates.
On September 30th, the U.S. Food and Drug Administration announced it has awarded 15 grants totaling more than $19 million to boost the development of medical device, drug, and biological products for patients with rare diseases, with at least a quarter of the funding going to studies focused solely on pediatrics. $1.6 million will go toward a Phase 2 Study of Poly-ICLC for the Treatment of Pediatric Low Grade Gliomas, the most common type of brain tumor in children.
On September 19, Dr. Francis Collins, the Director of the National Institutes of Health (NIH), announced a new pediatric trial for children with cancer. Sponsored by the National Cancer Institute (NCI), the Molecular Analysis for Therapy Choice Program (MATCH) trial will enroll children with advanced cancers that have progressed on standard therapy.
