There are over 350,000 survivors of childhood cancer in the United States today. Two-thirds of these individuals are likely to experience at least one late effect of treatment, and almost one-fourth will face a late effect that is serious or life-threatening. Childhood cancer survivors may face a range of late effects of their disease and treatment, including second cancers, heart and lung damage, osteoporosis, financial pressures, psychosocial issues, employment and fertility problems.
A 2003 Institute of Medicine (IOM) report titled, “Childhood Cancer Survivorship: Improving Care and Quality of Life” (co-edited by the founder of the Children’s Cause. To order this document visit https://download.nap.edu/catalog.php?record_id=10767&utm_source=Network&utm_medium=Widgetv2&utm_content=v2&utm_campaign=Widget ) analyzes issues around care for this population and proposes a policy agenda that would improve health care delivery, strengthen investments in education and training, and expand research around late effects and health disparities. Legislation to improve the long-term outlook for survivors of childhood cancer has been introduced in Congress and is derived from the IOM report recommendations.
Pediatric, Adolescent and Young Adult Cancer Survivorship Research and Quality of Life Act
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 the Pediatric, Adolescent and Young Adult Cancer Survivorship Research and Quality of Life Act (S.1613/H.R.3015). This legislation will:
- Develop pilot programs to evaluate model systems of care and identify the most effective ways to provide follow-up care to childhood cancer survivors;
- Enhance research to ensure that the late effects of new therapies can be followed effectively;
- Create grants to establish comprehensive long-term survivorship clinics to improve access to follow-up care; 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.
Children’s Cause for Cancer Advocacy (CCCA) worked closely with Members of Congress and Congressional staff to craft provisions and garner Congressional support for the introduction of the Pediatric, Adolescent and Young Adult Cancer Survivorship Research and Quality of Life Act. CCCA is committed to advancing this critical legislation to improve the care and quality of life for survivors of childhood cancer by meeting with Congressional staff, educating members of Congress, advocates, other childhood cancer groups and the public about the importance of this bill to the care and quality of life of survivors of childhood cancer.
On March 26, 2012, the Alliance for Childhood Cancer sent a letter to Members of Congress supporting the legislation. The letter included CCCA’s signature, as a member of the Alliance.
Take Action to Ensure Funding for Childhood Cancer Data Collection and Reporting Activities
March 14, 2012
Dear Childhood Cancer Advocate:
On March 13, Senators Jack Reed (D-RI) and Johnny Isakson (R-GA) sent a letter to Senate Labor, Health and Human Services, and Education Appropriations Committee requesting funding for childhood cancer surveillance activities in the fiscal year (FY) 2013 appropriations bill. We are asking for your support in this effort – please contact your Senators and ask that they sign Senator Reed and Isakson’s letter.
The Reed-Isakson letter specifically asks that the committee provide funding to improve childhood cancer surveillance conducted by the Centers for Disease Control (CDC). These efforts enable researchers to monitor trends and incidences of childhood cancer to better understand the disease, ensure appropriate treatment, and track long-term health outcomes. These goals are consistent with the Caroline Pryce Walker Conquer Childhood Cancer Act, which was signed into law in 2008.
The Labor, Health and Human Services, and Educations Appropriations Committee has provided funding to the CDC for these activities in the past, which has helped states transform information technology infrastructure through the expansion of electronic reporting. This activity has allowed researchers to rapidly report critical information to state cancer registries. Capturing this data will expand our knowledge about childhood cancer patterns – including diagnoses, treatments, and survivorship – and ultimately enhance treatment for children with cancer.
Please take action today by contacting your Senators and urging them to sign Senator Reed and Isakson’s letter in support of funding for childhood cancer surveillance by filling out the form below.
Thank you for adding your voice to this very important cause.
The CCCA Team