In 1986, the founders of NCCS set out to establish an organization that would change the parlance from cancer “victim” to cancer “survivor,” envisioning an organization that would deal with the full spectrum of survivorship issues related to living with, through and beyond a cancer diagnosis. NCCS’s definition of a survivor, from the time of diagnosis and for the balance of life is now the norm for the cancer community and beyond. NCCS has expanded its definition of survivor to include family, friends and caregivers.
Founded in Albuquerque, New Mexico, NCCS’s diverse leadership included some of the most recognized experts on employment and disability law, health care consumerism and psychosocial and behavioral research. Consequently, NCCS quickly developed a reputation as the “go to” organization for how to deal with the physiological, psychosocial, economic and spiritual issues that accompany a cancer diagnosis. The informed patient was — and still is — at the heart of NCCS’s agenda. NCCS began its work by contributing to the literature. NCCS’s first publication dealt with doctor/patient communications, followed by publications on survivors’ rights and how to be an informed and knowledgeable health care consumer.
In 1992, NCCS relocated its offices to Washington, D.C. to be closer to the organizations and institutions that play a role in educating government agencies and policymakers about the need for quality cancer care throughout the survivorship continuum — beginning at the moment of diagnosis and continuing for the remainder of life.
In 1993, NCCS convened other patient advocates to create the Cancer Leadership Council (CLC) The CLC forum has since grown to include 29 leading patient advocacy, professional and voluntary health organizations and meets monthly in Washington D.C. as a patient-centered forum of national advocacy organizations addressing public policy issues in cancer.
NCCS published its Imperatives for Quality Cancer Care: Access, Advocacy, Action and Accountability in 1996, the first report to approach quality cancer care for the patient/survivor perspective. This report provided the impetus that led to the creation of the National Cancer Institute’s Office of Cancer Survivorship in 1996.
NCCS led a nationwide grassroots campaign to make the cause, the care and the cure of cancer the nation’s top health priority. The campaign culminated in 1998’s THE MARCH…Coming Together to Conquer CancerTM, an event that brought 250,000 supporters to the nation’s capital and a million more to events in all 50 states.
In 2004, NCCS launched Cancer Advocacy Now!™ to assure that America’s nearly 12 million cancer survivors and those who care for them have a voice in advocating for quality cancer care in Washington, D.C. and in forums where health care policy is decided.
Patient education is a priority for NCCS. We believe that access to credible and accurate patient information, such as NCCS’s award-winning Cancer Survival Toolbox® is key to demanding and receiving quality cancer care.
NCCS is actively supporting legislation that was first introduced in May 2006 and then reintroduced in February 2007 by Representatives Lois Capps (D, CA) and Tom Davis (R, VA). The Comprehensive Cancer Care Improvement Act (CCCIA) would advance a system of integrated and coordinated cancer care and improved communication between patients and their healthcare teams regarding treatment options and follow-up care. In 2008, Senator Mary Landrieu (D, LA) introduced the Senate companion to CCCIA. By the close of the 110th Congress the CCCIA had more than 100 co-sponsors in the House. In April 2009, Reps. Lois Capps and Charles Boustany (D, LA) re-introduced the CCCIA (H.R. 1844). In December 2011, Reps. Lois Capps and Charles Boustany (R-LA) have reintroduced the legislation, now H.R. 3705.