Sec. 2. Findings
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Congress makes the following findings: Each year in the United States there are an estimated 15,780 children between birth and the age of 19 diagnosed with cancer. Approximately 1 in 285 children in the United States will be diagnosed with cancer before their 20th birthday. In 1960, only 4 percent of children with cancer survived more than 5 years, but today, cure rates have increased to over 80 percent for children and adolescents under age 20. While the cure rates for some childhood cancers are now over 80 percent, the survival rates for many types of cancers in children remain extremely low.
According to the Centers for Disease Control and Prevention, cancer continues to be the leading cause of death by disease in children and adolescents under the age of 14. By 2020, the population of childhood cancers survivors is expected to be 500,000 individuals. As many as two-thirds of childhood cancer survivors are likely to experience at least one late effect of treatment, with as many as one-fourth experiencing a late effect that is serious or life-threatening. Common late effects of childhood cancer are neurocognitive, psychological, cardiopulmonary, endocrine, and musculoskeletal effects, secondary malignancies, and early death.
As a result of disparities in the delivery of cancer care, minority, low-income, and other medically underserved children are more likely to be diagnosed with late stage disease, experience poorer treatment outcomes, have shorter survival time with less quality of life, and experience a substantially greater likelihood of cancer death. Collection of biospecimens, along with clinical and outcome data, on the maximum possible number of children with cancer in the United States is necessary to improve childhood cancer treatments and cures.
Currently biospecimens, and clinical and outcome data, are collected for less than half of children in the United States with cancer. Despite the significant unmet medical need, pharmaceutical companies have been reluctant to develop drugs appropriate for children with cancer because it requires making an investment in products that are unlikely to cover the high costs associated with their research, development, marketing, and distribution. Only 3 drugs have been approved by the Food and Drug Administration to treat any type of pediatric cancer since the 1980s, including Unituxin, the first-ever drug approved for high-risk neuroblastoma, for which the sponsor of the drug was rewarded under the Food and Drug Administration's priority review program to encourage treatments for rare pediatric diseases.
The late effects of cancer treatment may change as therapies evolve, which means that the monitoring and care of cancer survivors may need to be modified on a routine basis. Despite the intense stress caused by childhood cancer, there is a lack of standardized and coordinated psychosocial care for the children and their families, from the date of diagnosis through treatment and survivorship. The Institute of Medicine, in its report on cancer survivorship entitled Childhood Cancer Survivorship:
Improving Care and Quality of Life , states that an organized system of care and a method of care for pediatric cancer survivors is needed. Focused and well-designed research and pilot health delivery programs can answer questions about the optimal ways to provide health care, follow-up monitoring services, and survivorship care to those diagnosed with childhood cancer and contribute to improvements in the quality of care and quality of life of those individuals through adulthood.
The National Institutes of Health, including the National Cancer Institute, invest approximately half of their annual appropriations to support basic research that serves as the foundation for translational and clinical research for all diseases and conditions, with the potential to lead to breakthroughs for children with cancer. Virtually all progress against cancer—in both children and adults—has been founded in basic research, often in areas not directly related to the disease.
The National Cancer Institute supports a number of key research programs specifically to advance childhood cancer care, including precision medicine clinical trials for children with cancer, including the Children’s Oncology Group (part of the National Clinical Trials Network of the National Cancer Institute), the Pediatric Preclinical Testing Program, the Pediatric Brain Tumor Consortium, the Childhood Cancer Survivor Study, the Therapeutically Applicable Research to Generate Effective Treatments program and related pediatric cancer genomics research, and the Pediatric Oncology Branch (part of the intramural program of the National Cancer Institute, whose mission is to develop new treatments for pediatric cancer).