Keynote Address: NCCS: 20 Years Pioneering Cancer Survivorship,1986 - 2006
Advocacy, Access, Action & Accountability
President and Chief Executive Officer
National Coalition for Cancer Survivorship
As the number of cancer survivors in the United States increased, survivors' needs for support after successful completion of treatment became apparent. Cancer survivors needed assistance in coping with psychological effects, such as fear and uncertainty after diagnosis, as well as the long-term physical effects associated with cancer and its treatment. The National Coalition for Cancer Survivorship (NCCS) was created to serve as an advocate for this population.
The NCCS defines "survivorship" as beginning at the time of diagnosis and as "living through and beyond a diagnosis of cancer." Survivors include family, friends, and caregivers, as well as the patients themselves. The Cancer Survivor's Bill of Rights, developed by NCCS in 1987, supports survivors' right to a comprehensive care summary and a plan for follow-up after primary treatment as well as the right to continuous, lifelong medical care, as needed. The Bill of Rights contends that professionals involved in the care of survivors need to be sensitive to survivors' lifestyle choices and needs for dignity and privacy, careful to take seriously fears of recurrence, aware of possible long-term and late effects of cancer and their treatment, open to providing survivors with candid medical information as desired, and knowledgeable about counseling and rehabilitation resources and willing to refer survivors to these services to improve their quality of life.
NCCS has developed many programs and publications and supported key advocacy issues; it was integral in establishing cancer survivorship as a distinct field of research at NCI, which led to creation of the OCS. NCCS also advocated for survivorship issues to be included in models of comprehensive cancer care. NCCS publications were among the first to discuss the idea of patients participating as partners in their care and to address coping with cancer survivorship in the workplace. NCCS also has helped develop evidence to inform Congress of the need for cancer survivorship research funding.
The Institute of Medicine (IOM) report on adult cancer survivorship, From Cancer Patient to Cancer Survivor: Lost in Transition, to which the NCCS contributed data and testimony, outlined recommendations concerning post-treatment survivorship care, research, and policy:
- Raise awareness of the needs of cancer survivors.
- Develop survivorship care plans.
- Develop quality-of-care measures and implement quality assurance programs.
- Test models of coordinated, interdisciplinary survivorship care.
- Incorporate survivorship into statewide comprehensive cancer control plans and evaluate their effectiveness.
- Expand educational opportunities for health care providers.
- Eliminate discrimination and minimize adverse effects on employment.
- Ensure access to adequate and affordable health insurance.
- Increase survivorship research support by agencies such as NCI, Centers for Disease Control and Prevention (CDC), Centers for Medicaid and Medicare Services (CMS), and the American Cancer Society (ACS).
NCCS also supports advocacy efforts, which are crucial to continuing to advance cancer survivorship research. Cancer survivors and those interested in supporting this effort are encouraged to speak up, join advocacy networks, and build relationships with policymakers. Over time, advocacy efforts will be instrumental in garnering appropriate attention and funding for cancer survivorship research.