CCCA Praises Childhood Cancer Survivor Provisions in the ALERT Act

The Children’s Cause for Cancer Advocacy (CCCA) praises the inclusion of provisions to assist childhood cancer survivors in the Access to Life-Saving Early detection, Research and Treatment (ALERT) Act (H.R. 6224). This comprehensive cancer legislation, introduced by Congresswoman Lois Capps (D-CA) and Congressman Frank Pallone (D-NJ) on September 28, 2010, incorporates legislative provisions similar to those in the Childhood Cancer Survivorship Research and Quality of Life Act (H.R. 2109), a bill CCCA has been consulted on and actively promoting.

“The Children’s Cause is deeply appreciative of Congresswoman Capps’ and Congressman Pallone’s efforts to advance cancer care through introduction of this legislation, specifically for the youngest victims of cancer,” said Lori Salley, CCCA’s Executive Director. “For the growing population of childhood cancer survivors, there are provisions in this bill that will give needed attention and resources to ensuring that this vulnerable population can live healthier, longer lives.”

Specifically, H.R. 6224 seeks to enhance the Centers of Disease Control’s cancer control programs by providing greater focus on childhood cancer survivorship. The legislation expands and coordinates childhood cancer survivorship programs within the National Institutes of Health. The bill includes a patient tracking system, identification of risk and protective factors related to late effects of treatment, intervention studies for patients and families, grants for research related to disparities in childhood cancer survivorship, evaluation of follow up care, pilot programs to explore model systems of care, and workforce development to ensure access to better trained providers. Funds are also made available for establishing and operating clinics to provide comprehensive long-term follow up services for childhood cancer survivors, as well as for improving physical and psychosocial care.

There are more than 300,000 childhood cancer survivors in the United States. Due to the toxic treatments used to save children with cancer, these individuals are at significant risk of developing secondary health problems that ultimately compromise the quality and length of their lives. In fact, two-thirds of childhood cancer survivors suffer at least one chronic or late-occurring complication of their cancer therapy, with about one-third having serious or life-threatening complications that diminish their quality and length of life. Late effects include second cancers, cardiac and pulmonary disease, musculoskeletal changes, cognitive dysfunction, psychosocial challenges, obesity, thyroid disease, and bladder disease. Better understanding the health risks faced by this population and ensuring appropriate, quality follow up care is critical to their long-term survival.

“We look forward to working with this Congress and the next to enact policies that will address the unique needs of childhood cancer survivors, as well as encourage the development of less toxic, more effective therapies that minimize long-term adverse effects of treatment,” said Salley.

CCCA is a leading national advocacy organization that works to achieve access to less toxic and more effective therapies, expand resources for treatment, and address the needs and challenges of childhood cancer survivors and their families. CCCA works to ensure that these needs and perspectives are integrated into the highest deliberations of cancer policy.