The National Coalition for Cancer Survivorship


NCCS Founding Meeting

Dr. Fitzhugh Mullan, a co-founder of the National Coalition for Cancer Survivorship (center), leads the NCCS founding meeting. “It is as if we have invented sophisticated techniques to save people from drowning, but once they have been pulled from the water, we leave them on the dock to cough and splutter on their own in the belief that we have done all that we can.” Dr. Fitzhugh Mullan, from his essay Seasons of Survival: Reflections of a Physician with Cancer, New England Journal of Medicine, July 1985.

In 1986, the founders of NCCS set out to establish an organization that replace the words “cancer victim” with “cancer survivor,” and bring about a different notion of the cancer experience. The founders envisioned an organization that would deal with the full spectrum of survivorship issues related to living with, through and beyond a cancer diagnosis.

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 and evidence base for quality cancer care. 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.

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After reading NCCS’s Imperatives for Quality Cancer Care, NCI Director, Dr. Richard Klausner establishes the Office of Cancer Survivorship to encourage survivorship research.

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 develops its Imperatives for Quality Cancer Care: Access, Advocacy, Action and Accountability in 1995. This was the first report to approach quality cancer care for the patient/survivor perspective and 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 more than 100,000 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 14 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.

For years, NCCS has played an active role to help support and pass cancer care planning legislation. The latest version is again bipartisan legislation being championed by Reps. Mark DeSaulnier (D-CA) and Ted Poe (R-TX), the Cancer Care Planning and Communications (CCPC) Act, H.R. 5160. The CCPC Act encourages the development of a personalized cancer care plan for Medicare beneficiaries and is our top federal priority in the 115th Congress.

For more information about NCCS’s history, please view the NCCS Timeline of Achievements.

Highlights of NCCS Policy Accomplishments: 30 Years of Advocacy

Fostering a Patient-Centered System of Cancer Care
  • Comprehensive Cancer Care Improvement Act (CCCIA), 109th -112th Congresses; reintroduction in the U.S. House of Representatives in December 2011. NCCS has been a leader in legislative efforts to develop and advance legislation to establish a Medicare service for cancer care treatment planning that would contribute to the delivery of coordinated cancer care.  The bill, first introduced in the 109th Congress by Representative Lois Capps (D-CA), has enjoyed bipartisan support in subsequent Congresses.  The legislation is also supported by patient advocacy organizations, professional societies, cancer researchers, and leading cancer centers across the country.  In late 2011, Representatives Capps (D-CA) and Charles Boustany (R-LA) reintroduced the legislation (H.R. 3705) in the House and in February 2012, Senator Landrieu (D-LA) reintroduced the legislation (S.2097) in the Senate. Reps. Capps and Boustany reintroduced the legislation in June 2015 as The Planning Actively for Cancer Treatment (PACT) Act (H.R. 2846) and sent a Dear Colleague letter to all House members encouraging them to support the legislation. The legislation was reintroduced in the 115th Congress, by Reps. Mark DeSaulnier (D-CA) and Ted Poe (R-TX), this time called the Cancer Care Planning and Communications (CCPC) Act, H.R. 5160.
  • Institute of Medicine Workshop on Patient-Centered Cancer Treatment Planning: Improving the Quality of Oncology Care, 2011. In early 2011, NCCS partnered with the Institute of Medicine’s National Cancer Policy Forum to convene a workshop addressing patient-centered cancer treatment planning. The workshop reviewed best practices in cancer care planning and strategies to enhance adoption of cancer care planning in all sites for cancer care delivery.  Findings of the workshop have been broadly disseminated to influence current cancer care practice.
  •  FDA Citizen Petition, 2006-2009. NCCS and ASCO filed a Citizen Petition with the FDA requesting clear standards for expanded patient access to investigational therapies.  In August 2009, the FDA finalized two regulations that refine FDA procedures and improve patient access to investigational drug therapies.
  • Medicare Palliative Care Demonstration Project, 2010. NCCS secured passage of a Medicare hospice demonstration project that was introduced as a provision of the Comprehensive Cancer Care Improvement Act.  The Medicare hospice concurrent care demonstration project, enacted as a provision of the Patient Protection and Affordable Care Act, would test the impact of providing Medicare beneficiaries hospice benefits as well as all other Medicare benefits. The demonstration project will last three years in not more than 15 sites.
Ensuring Prompt and Appropriate Payment for Cancer Treatments
  • Medicare Coverage of Oral Anti-Cancer Drugs and Off-Label Uses of Cancer Drugs, 1993 NCCS joined professional societies and other patient advocates in supporting legislation to mandate coverage of oral cancer drugs that were equivalent to intravenous therapies and also coverage of off-label uses of cancer drugs.  These provisions to ensure cancer patient access to important therapies were included in the Omnibus Budget Reconciliation Act of 1993.
  • Access to Oral Cancer Therapies, 2000-2003 NCCS joined other cancer advocates, providers, and research companies in a legislative effort to secure Medicare payment for oral anti-cancer agents. By the close of the 107th Congress, three-quarters of the House members and more than half of Senators co-sponsored the Access to Cancer Therapies Act.  The measure was enacted as a provision of the Medicare Modernization Act of 2003 and implemented as a transition benefit in advance of implementation of Medicare Part D.
  • Coverage of Cancer Drugs in Medicare Part D, 2003  NCCS joined other cancer advocacy organizations in pursuing a policy to require coverage of “all or substantially all” anti-neoplastics in Medicare Part D, an effort intended to eliminate barriers to access to cancer drugs in the new Medicare prescription drug program.
Making the Affordable Care Act Work for Cancer Patients
  • Health Care Reform Implementation, 2010-2011. NCCS has participated in the rulemaking process for health care reform implementation by commenting on numerous proposed rules. Among the comments NCCS has filed are those on dependent coverage until age 26; preexisting condition exclusions, lifetime and annual limits, rescissions, and patient protections; modifications to the HIPAA privacy, security, and enforcement rules; coverage of preventive services; clinical quality measure concepts for stage 2 and stage 3 meaningful use; accountable care organizations; and establishment of health insurance exchanges and qualified health plans.NCCS also testified on essential benefits necessary to cancer survivors at an Institute of Medicine hearing convened to inform the IOM panel’s work on essential health benefits.
Improving the Environment for Cancer Research
  • Clinical Trials Coverage, 2000.  NCCS joined with the American Society of Clinical Oncology and other patient advocacy groups in pursuit of legislation to require Medicare coverage for the routine patient care costs for those enrolled in cancer clinical trials.  After pursuing the legislation in three Congresses, NCCS worked with other patient advocacy organizations in securing an Executive Memorandum establishing a Medicare coverage policy.  The Executive Memorandum, issued in June 2007, established a coverage policy for trials in all diseases.
Building the Evidence Base for Quality Cancer Care
Ongoing and Future Work
  • NCCS is a sponsor of the ongoing consensus study, Improving the Quality of Cancer Care: Addressing the Challenges of an Aging Population.
Developing a System for Measuring and Improving Cancer Care Quality
  • Cancer Quality Alliance, 2005-2013. NCCS has enjoyed a strong partnership with the American Society for Clinical Oncology in forming the Cancer Quality Alliance (CQA), a collaboration among 28 organizations to encourage the sharing and implementation of cancer quality measures and tools to improve cancer care. NCCS co-chairs this Alliance with ASCO. 
  • “Blueprint” for Quality Cancer Care, 2008.  NCCS was a leader in the creation of a “Blueprint” for quality cancer care, which was first published in the journal Cancerin September 2008.  Conceptualized and written through the collaborative effort of the CQA, the Blueprint is available as a teaching tool to improve the care for people living with, through and beyond a cancer diagnosis. 
  • ASCO Quality Care Symposium, 2012. In 2012, ASCO held its first Quality Care Symposium, co-chaired with NCCS, and brought together researchers, patient advocates, health system administrators, and practicing physicians to share results in measuring and improving the quality of cancer care.

NCCS Leadership and Executive Board »