The Children’s Cause for Cancer Advocacy (CCCA) is a national organization that works to ensure access to less toxic and more effective therapies, specialty care, and to address the needs and challenges of childhood cancer survivors. Each year, almost 12,500 children 14 years and under are diagnosed with cancer and though there are approximately 300,000 survivors in the United States today, cancer remains the leading disease killer of children.
The survival rates for some childhood cancers have improved significantly, but many of these survivors are unaware and unprepared to face the challenges likely to result from their disease and treatment. Childhood cancer survivors continue to experience serious long-term and late effects on their health and well-being. Because of this, CCCA works to ensure that the needs and perspectives of survivors and their families are integrated into the highest deliberations of cancer policy.
CCCA is committed to the reform of our nation’s health care system to ensure comprehensive, quality health care for the increasing childhood cancer survivorship population. CCCA’s principles for health care reform in the 111th Congress include:
Timely Access to Affordable, High Quality Cancer Care:
§ Childhood cancer survivors must have access to affordable, comprehensive health coverage, along with the necessary protections of insurance portability and renewability, as they reach adulthood and age out of their parents’ coverage or become ineligible for Medicaid or SCHIP coverage.
o Many cancer survivors today face unaffordable premiums, high out-of-pocket costs, annual or lifetime caps on benefits, pre-existing condition exclusions, and waiting periods. As a result, many incur huge debt, and are forced to delay or forgo important follow-up and long-term survivorship care.
§ All children and adolescents suspected of having cancer must have access and timely referral to pediatric oncology specialists for high quality screening, comprehensive initial evaluation, and diagnostic testing and treatment.
o Early access to diagnosis and treatment is critical to improving survival and long term outcomes for pediatric cancer patients, just as early access affects the outcomes for adults with cancer.
Improved Coordination and Integration of Health Care Services:
§ Care for children and adolescents with cancer should be provided by a multidisciplinary team of pediatric cancer specialists, including physicians, nurses, social workers, psychologists and other health care providers.
o Care coordination is a comprehensive approach to achieving continuity of care for patients and family members. In the context of childhood cancer, care coordination encompasses multiple aspects of care delivery including multidisciplinary team meetings, psychosocial assessment, referral practices, data collection and clinical treatment and family support services.
Long-Term Survivorship Care for Childhood Cancer Survivors:
§ Survivors should have access to comprehensive long-term follow-up care from pediatric cancer specialists and sub-specialists with expertise in late effects. Follow-up care teams should develop an effective plan of care to transition survivors, who upon adulthood are able to access a multi-disciplinary team of cancer care specialists knowledgeable about long-term and late effects of treatment experienced by childhood cancers.
o 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 facing a serious or life-threatening late effect. Some late effects are identified early in follow-up care and are easily resolved, while others may become chronic problems in adulthood. The most common late effects of childhood cancer are neurocognitive and psychological, cardiopulmonary and secondary malignancies.
Increased Research Funding:
§ Research funding must be a priority if children with cancer are to continue to benefit from the critical treatment advances made through clinical research.
o Of significant concern to the childhood cancer community is the impact of funding shortfalls on clinical cancer research. Clinical research is the critical link for translating basic and translational findings into improved treatments for the 1.5 million Americans – including approximately 12,500 children – diagnosed with cancer annually. Because of the relatively small childhood cancer patient population, pharmaceutical and biotech companies currently have little incentive to invest in research and development for new childhood cancer therapies. As a result the vast majority of support for childhood cancer research comes from the National Institutes of Health (NIH). Congress must continue to ensure advancements in childhood cancer research by adequately funding the NIH.
