Survivorship Legislation Introduced in the House and Senate


The “Pediatric, Adolescent, and Young Adult Cancer Survivorship Research and Quality of Life Act,” a bipartisan, bicameral bill that would fund research and survivorship programs to dramatically improve quality of life and medical care for survivors of children’s cancer, was introduced on September 22, 2011, in both the U.S. House of Representatives and the Senate.


“This is a critical issue for the more than 350,000 survivors of children’s cancer,” says CureSearch for Children’s Cancer President and CEO, John Lehr. “While doctors and researchers are able to treat more and more children’s cancer patients than ever before, 3 in 5 survivors still face significant, often life-threatening late effects, including secondary cancer and heart failure.  More research and programs are needed to help decrease these late effects.  That is why we are so grateful to the many members of Congress supporting this Act.”

The legislation is co-sponsored in the House by Rep. Jackie Speier (D-CA) and Rep. Michael McCaul (R-TX) and in the Senate by Sen. Jack Reed (D-RI) and Sen. Kay Bailey Hutchison (R-TX). Although the bills vary slightly – the House version would authorize $40 million per year for five years to be appropriated, while the Senate version requires already-appropriated funds from the Dept. of Health and Human Services be used to establish a new pilot program - both versions would help people who have beaten cancer live longer, healthier lives.

“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,” said Speier.  

If passed, the legislation would:  

  • Improve systems of follow-up care, and methods of transition to adult care for children’s cancer survivors;
  • Establish pilot programs to develop and evaluate model systems of care for children’s cancer survivors and improve coordination among providers;
  • Improve survivors' quality of life through research to ensure that the late effects of new therapies can be followed; and
  • Bring together educators, advocates, and providers to establish models in psychosocial services, create curricula for continuing education, and improve the overall emphasis on psychosocial care for survivors of children’s cancer.

Seven additional House members are signed on as co-sponsors of the bill: Marcia Fudge (D-OH); Peter King (R-NY); Tom Latham (R-IA); Jim Moran (D-VA); Chris Van Hollen (D-MD); Lynn Woolsey (D-CA); and Madeleine Bordallo (D-Guam). CureSearch joins Children’s Cause for Cancer Advocacy, an organization that worked closely with these Congressional co-sponsors to champion this legislation, in thanking the current co-sponsors.

The Senate bill is now in the hands of the Committee on Health, Education, Labor, and Pensions, and the House bill is with the Committee on Energy and Commerce.

CureSearch for Children’s Cancer is pleased to advocate for this and other legislation that advances our mission to fund and support children’s cancer research and to provide information and resources to all those affected by children’s cancer.

Christine Bork
Email Christine
(800) 458-6223



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