Cancer drugs assessed for pediatric use are most often evaluated either just prior to or after FDA approval for adult cancers. Companies’ reluctance to develop drugs for children with cancer in part reflects the small pediatric market and in part is an indication of persistent concern about the risk of toxicities in children in early trials.
The vast majority of children with cancer in the US are treated in the context of clinical research studies. About 12,400 children are diagnosed with cancer each year, and because of the relatively small sample sizes, clinical research studies must be conducted concurrently at multiple institutions in order to accrue sufficient numbers of patients.
The ability to successfully treat childhood cancers has improved dramatically over the last 30 years. According to the Institute of Medicine’s report “Childhood Cancer Survivorship: Improving Care and Quality of Life,” cure rates as measured in five-year survival are 78%. As a result, there is a significant population of childhood cancer survivors – about 1 in 640 adults ages 20 to 39 with a history of cancer. The consequences of this tremendous success are the “late effects” of being treated for cancer, which affect survivors’ long-term health and quality of life. As many as two-thirds of childhood cancer survivors are likely to experience at least one late effect, according to the Institute of Medicine. These may include neurocognitive, psychological, cardiopulmonary, endocrine and musculoskeletal problems, and second malignancies.
The Alliance for Childhood Cancer is committed to addressing the needs of childhood cancer survivors and advocates for programs and policies that ensure access to and insurance coverage for long-term, follow-up care, establishing systems of care necessary for comprehensive follow-up care, and research to address the effects of childhood cancer.
The Pediatric, Adolescent, and Young Adult Cancer Survivorship Research and Quality of Life Act of 2007 was introduced in the House of Representatives by Hilda Solis (CA) and Mary Bono Mack in December 2007 and in the Senate by Hillary Clinton in 2008. This legislation would improve and enhance cancer survivorship research and programs. The Alliance has endorsed this legislation and would like to thank Reps Solis and Bono for their commitment to improving the quality of life of childhood cancer survivors.
The Alliance for Childhood Cancer supports the Compassionate Care for Children Act of 2007, legislation introduced in Congress on January 29, 2008, to improve the quality of palliative and end-of-life care for children affected by life-threatening medical conditions and to assure that their families have access to appropriate resources.
