Alliance for Childhood Cancer
The Alliance for Childhood Cancer (ACC) works to advance survivorship issues. As a founding member of the Alliance, the PBTF works with more than 20 other national groups and professional organizations. Patient advocate organizations, oncology professionals and others drawn from the full spectrum of the cancer care field have created a unique alliance that brings concerned parties together to promote the interests of children with cancer.
The ACC briefs policymakers on issues facing children with cancer. In 2002 it adopted Core Principles for the Quality Care of Children and Adolescents with Cancer in an effort to ensure quality care addresses seven areas of critical importance for children and adolescents living with cancer. A Congressional Briefing was held in 2002 at the US Capitol by the ACC. Dianne Traynor, Co-Chair of the ACC at the time, spoke to members of Congress to help introduce these "Core Principles for Quality Care."
The ACC has also adopted its Core Principles for the Long Term Follow-up Care of Childhood Cancer Survivors. Again, a Congressional Briefing was held at the US Capitol and survivors of childhood cancer spoke about their survivorship journey and the long-term effects of childhood cancer. Legislators heard that "long-term survivors may receive follow-up care from a range of providers, including oncologists, non-oncology specialists, psychologist, social workers, physical therapists, primary care physicians and other healthcare providers and this care may be provided in a variety of environments." The survivorship principles recognize that the variations in systems and sites for care may reflect the age and diagnosis of the patient, original site of care, geography, insurance coverage and survivor awareness. The care that survivors receive may be comprehensive and multidisciplinary and therefore adequate to meet survivors' needs, but may still fail to meet the minimum standards necessary to ensure good outcomes for survivors of childhood and adolescent cancer.
The Core Principles on Follow-up Care for survivors were drafted to improve access, awareness, education, research and treatment for childhood cancer survivors. Among the topics covered is insurance coverage for post-treatment monitoring of long-term followup care and treatment of late effects, which is important when parents change jobs or employers change insurance plans, as well as when children become adults.
Another is the importance of access to care from a variety of specialists and healthcare providers, both during and after treatment of the primary illness. The ACC also supports a national pediatric cancer survivor registry to help formulate and guide research and provider education efforts on survivorship and the prevention and treatment of late effects.
