National Coalition for Cancer Survivorship

National Coalition for Cancer Survivorship
Name	National Coalition for Cancer Survivorship
Abbreviation	NCCS
Formation	1986
Type	Nonprofit
Headquarters	United States
Focus	Cancer survivorship, patient advocacy, health policy

National Coalition for Cancer Survivorship. The National Coalition for Cancer Survivorship is a United States-based nonprofit advocacy organization focused on improving quality of life and policy for people living with and beyond cancer. Founded in the 1980s, the organization has engaged with federal institutions, patient groups, professional societies, and philanthropic entities to influence cancer care, survivorship research, and health policy nationwide.

History

The organization traces its origins to the mid-1980s response by cancer patient advocates who had connections to American Cancer Society, Susan G. Komen for the Cure, Mayo Clinic, Memorial Sloan Kettering Cancer Center, and other leading institutions. Early collaborators included activists with ties to National Institutes of Health, Centers for Disease Control and Prevention, American Society of Clinical Oncology, and regional cancer coalitions in states such as California, New York, and Texas. During the 1990s the group participated in coalitions alongside National Coalition for the Homeless, AARP, National Health Council, and advocacy networks active around the passage of laws influenced by Americans with Disabilities Act of 1990, Health Insurance Portability and Accountability Act of 1996, and discussions in committees of the United States Senate and United States House of Representatives. In subsequent decades collaboration extended to academic partners including Johns Hopkins University, Harvard Medical School, and University of California, San Francisco.

Mission and Advocacy

The organization’s mission emphasizes survivorship care planning and patient-centered policy, aligning with guidance from Institute of Medicine, World Health Organization, Food and Drug Administration, National Cancer Institute, and clinical societies such as European Society for Medical Oncology and American College of Surgeons. Advocacy priorities have intersected with initiatives led by Patient-Centered Outcomes Research Institute, Robert Wood Johnson Foundation, Kaiser Family Foundation, and legislative efforts debated in venues like hearings of the Senate Committee on Health, Education, Labor, and Pensions and the House Committee on Energy and Commerce. The coalition has engaged with coalitions connected to Susan B. Anthony, Bill Clinton administration health advisers, and policy strategists who previously worked with Centers for Medicare & Medicaid Services and Office of the Surgeon General.

Programs and Services

Programs offered include survivorship care planning tools used by oncology clinics affiliated with Dana-Farber Cancer Institute, Cleveland Clinic, and community hospitals in networks such as Kaiser Permanente and Partners HealthCare. Education and training resources have been developed in partnership with academic centers like Columbia University, Stanford University School of Medicine, and professional associations including Oncology Nursing Society and American Society of Radiation Oncology. Outreach and peer-support initiatives have coordinated with groups such as Livestrong Foundation, Leukemia & Lymphoma Society, Alfred Mann Foundation, and state cancer registries maintained by entities like California Cancer Registry and New York State Department of Health.

Research and Policy Contributions

The organization has contributed to survivorship research agendas appearing in publications from Journal of Clinical Oncology, The Lancet Oncology, and policy briefs circulated among National Academies of Sciences, Engineering, and Medicine, Agency for Healthcare Research and Quality, and Commonwealth Fund. It has filed comments responding to rulemaking by Centers for Medicare & Medicaid Services and regulatory proposals from the Food and Drug Administration, and participated in consensus conferences alongside European Commission delegations and panels convened by World Health Organization. Collaborations included multicenter efforts with Fred Hutchinson Cancer Research Center, Memorial Sloan Kettering Cancer Center, and population studies drawing on data from Surveillance, Epidemiology, and End Results Program.

Organizational Structure and Funding

The nonprofit is governed by a board that has included leaders with prior roles at American Cancer Society, Leukemia & Lymphoma Society, National Institutes of Health, and academia such as Yale School of Medicine and University of Pennsylvania. Staff and fellows have come from training programs affiliated with Georgetown University, Boston University School of Public Health, and policy internships tied to Center for American Progress and congressional offices. Funding historically has derived from a combination of philanthropic grants from foundations like Robert Wood Johnson Foundation, corporate support involving health systems such as UnitedHealth Group and Blue Cross Blue Shield Association, and charitable donations processed through fiscal sponsors including Community Health Charities.

Impact and Notable Achievements

Notable achievements include advancing survivorship care planning concepts cited in reports by the Institute of Medicine and incorporated in clinical recommendations by American Society of Clinical Oncology and National Comprehensive Cancer Network. The organization influenced policy dialogues that intersected with debates involving Medicare coverage, protections resembling aspects of the Affordable Care Act, and quality measures developed with Centers for Medicare & Medicaid Services. Its partnerships and tool dissemination affected practice at centers such as Mayo Clinic, Dana-Farber Cancer Institute, and networks like Partners HealthCare, while its advocacy work has been recognized by awards from organizations including Patient Advocate Foundation and peer-nominated honors within the survivorship community.

Category:Cancer organizations based in the United States