CCCA Supports Introduction of Childhood Cancer Survivorship Legislation

CCCA Supports Introduction of Childhood Cancer Survivorship Legislation
On September 22, 2011, Senators Jack Reed (D-RI) and Kay Bailey Hutchison (R-TX) and Representatives Jackie Speier (D-CA) and Michael McCaul (R-TX) introduced bipartisan legislation to improve the care and quality of life of childhood cancer survivors. The Pediatric, Adolescent and Young Adult Cancer Survivorship Research and Quality of Life Act of 2011 marks a critical step forward in the delivery of medical and psychosocial care to survivors of childhood cancer.
"We applaud the leadership of Senator Reed, Senator Hutchison, Representative Speier, and Representative McCaul for introducing this important legislation designed to ensure that children who have fought and survived cancer have access to high-quality care in order to live long, healthy lives," said Maureen Lilly, Executive Director of the Children's Cause for Cancer Advocacy (CCCA). "This bipartisan bill is an opportunity to launch a national effort to improve how these children and young people are cared for as they grow to be adults."
In 1960, only four percent of children with cancer survived more than five years, compared to an eighty percent five-year survival rate today. Two-thirds of the 300,000 childhood cancer survivors in the United States are likely to suffer from at least one late effect of treatment, and one-fourth will have a late effect that is serious or life-threatening.
The Pediatric, Adolescent and Young Adult Cancer Survivorship Research and Quality of Life Act of 2011 will:
  • Respond to the Institute of Medicine report "Childhood Cancer Survivorship: Improving Care and Quality of Life," on the need to improve systems of follow-up care, methods of transition to adult care and quality of life for pediatric cancer survivors with special attention to the needs of low income and minority survivors;
  • Develop pilot programs to evaluate model systems of care and identify the most effective ways to provide follow-up care to childhood cancer survivors;
  • Improve survivors' quality of life through late effects clinics and research to ensure that the late effects of new therapies can be followed effectively; and
  • Convene a workforce of educators, advocates and providers to develop models in relevant psychosocial services, establish curricula for continuing education, and strengthen the emphasis on psychosocial care for childhood cancer survivors.
For years, CCCA has led the way in national policy debates and advocacy on how to improve the care of children who survive cancer. CCCA is a national organization that works to achieve access to less toxic and more effective therapies, expand resources for research and treatment, and address the needs and challenges of childhood cancer survivors and their families. CCCA also works to ensure that these needs and perspectives are integrated into the highest deliberations of cancer policy.

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