Policy Issues
Pediatric Cancer Drug Development
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.
FDA Law Renews Provisions to Improve Pediatric Drug Development
Related Resources (Documents and reports issued by other organizations or federal agencies)
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Research and Clinical Trials Participation
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.
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Survivorship
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 Childhood Cancer Survivorship Research and Quality of Life Act (H.R.2109) was introduced in the House of Representatives by Jackie Speier (CA) Mary Bono Mack in April 2009. This legislation would improve and enhance cancer survivorship research and programs. The Alliance has endorsed this legislation and would like to thank Reps Speier and Bono Mack for their commitment to improving the quality of life of childhood cancer survivors.
Related Resources (Documents or reports issued by other organizations or federal agencies)
Alliance for Childhood Cancer and City of Hope Hold Congressional Briefing To Educate Congress on Childhood Cancer Survival
On June 9, 2008 in coordination with Representatives Hilda Solis (D-CA) and Mary Bono Mack (R-CA), the Alliance for Childhood Cancer and City of Hope held a Congressional briefing entitled “Childhood Cancer Survivors: Recommendations for Improving Care and Quality of Life for Survivors,” to educate Hill staff and members of the cancer community about of the key issues affecting childhood cancer patients and survivors.
In December 2007, Reps. Solis and Bono Mack introduced the Pediatric, Adolescent, and Young Adult Cancer Survivorship Research and Quality of Life Act of 2007(H.R. 4450). The bill, known as the Childhood Cancer Survivorship Act, supports improved health for the growing number of people who have battled childhood cancers by improving and expanding the delivery of medical and psychosocial care to these survivors. Sen. Hillary Clinton (D-NY) introduced the Senate version of the bill (S. 2877) this past April.
Specifically, the legislation would establish:
- National Institutes of Health (NIH) cancer survivorship programs, including grants to address health disparities in childhood cancer survivorship.
- Clinics that would provide comprehensive long-term follow-up services for survivors of childhood cancer.
- Grants to improve access to care for survivors of childhood cancer.
- Centers for Disease Control and Prevention cancer control programs to provide guidance to states and encourage them to improve systems of care for survivors of childhood cancer.
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Palliative Care
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.
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