National Coalition for Cancer Survivorship

The National Coalition for Cancer Survivorship (NCCS) is the oldest survivor-led cancer advocacy organizations in the United States and a voice at the federal level, advocating for quality cancer care for all Americans and empowering cancer survivors.

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Mission

NCCS believes in evidence-based advocacy for systemic changes at the federal level in how the nation researches, regulates, finances and delivers quality cancer care. As the founder and recognized leader of the Cancer Leadership Council (CLC), a patient-centered forum of 29 leading national advocacy organizations addressing cancer-related public policy issues in cancer, NCCS effects change at the highest levels of government. In 2004, NCCS launched Cancer Advocacy Now!, a legislative advocacy network that gives the concerns of the NCCS a powerful presence on Capitol Hill, devoted exclusively to addressing the federal polices on cancer-related issues.^[1]

Patient education is also a priority for NCCS. NCCS’s patient tools and publications address many important survivorship issues that are universal to survivors of all types of cancer, especially the role of advocating for oneself. NCCS’s award-winning program, the Cancer Survival Toolbox, is a free comprehensive audio program designed to help cancer survivors gain practical skills to deal with the diagnosis, treatment, and challenges of cancer. ^[2]

History

On October 26, 1986, twenty-five leaders with expertise in cancer research, community-based cancer support programs, cancer information services, and cancer advocacy gathered in Albuquerque, New Mexico and founded the National Coalition for Cancer Survivorship.

When NCCS adopted its charter stating, "from the moment of diagnosis and for the balance of life, an individual diagnosed with cancer is a survivor," cancer survivors and their families began to understand what NCCS calls "survivorship."

Since 1986, NCCS has been at the forefront of patient advocacy — educating, empowering, and uniting survivors and their communities through its publications and programs while representing the "patient's voice" in Washington, D.C., on policy issues that affect survivors' ability to access quality cancer care.

NCCS's has made achievements on behalf of this nation's 10 million cancer survivors and the millions more whose lives have been touched by this disease. Below is a quick look at some of its successes, mostly in the public policy arena.

• Americans with Disabilities Act (ADA), 1990. NCCS Founding Chair, Barbara Hoffman, JD, contributes to the writing of the Americans for Disabilities Act.
• National Breast Cancer Coalition (NBCC), 1990. NCCS becomes one of five founding organizations of the National Breast Cancer Coalition.
• Medicare Cancer Coverage Improvement Act, 1993. NCCS contributes significantly to drafting and passage of the Rockefeller-Levin Medicare Cancer Coverage Improvement Act, which provides Medicare coverage for oral forms of existing intravenous (IV) anti-cancer drugs and gives patients an important quality of life choice in how they choose to receive cancer treatment.
• Cancer Leadership Council (CLC), 1993. NCCS convenes other patient advocates around the Cancer Leadership Council. The CLC forum is intended to gain consensus on health care reform as viewed from the patient's perspective. By 2003, the CLC has grown to include 29 of the leading patient advocacy, professional, and volunteer organizations.
• First National Congress on Cancer Survivorship, 1995. NCCS hosts the First National Congress on Cancer Survivorship of more than 300 experts — cancer survivors, caregivers, health care professionals, scientists, community leaders, policy experts, legislators, government officials, members of the clergy, and the media.
• CanSearch Website, 1995. NCCS launches one of the first Internet sites directing users to credible, online resources on cancer treatment and survivorship.
• Imperatives for Quality Cancer Care: Access, Advocacy, Action & Accountability, 1996. NCCS publishes the first document to address quality cancer care from the patient's perspective (based on the First National Congress on Cancer Survivorship).
• Office of Cancer Survivorship, National Cancer Institute, 1996. After reading NCCS's Imperatives for Quality Cancer Care, NCI Director, Dr. Richard Klausner establishes the Office of Cancer Survivorship to encourage survivorship research.
• Health Insurance Portability & Accountability Act, 1996. NCCS contributes significantly to drafting and passage of the Kassebaum-Kennedy Health Insurance Portability & Accountability Act (HIPAA) that gives patients changing jobs some measure of security regarding maintaining insurance benefits and continuity of care.
• National Cancer Policy Board, 1996. NCCS receives one of two consumer representative positions on the newly established National Cancer Policy Board (NCPB), which operates under the auspices of the Institute of Medicine. The NCPB's role is to evaluate the United States cancer program and related policy making.
• THE MARCH… Coming Together To Conquer Cancer, 1997-1998. NCCS launches the first-ever national public awareness and grassroots organizing campaign on CNN's Larry King Live. On September 25-26, 1998, 250,000 people gather on The National Mall in Washington, D.C., and a million more join 200 events in all 50 states calling for better funding for cancer research and access to quality cancer care for all Americans. Days later, the United States Congress awards a 16% increase in National Cancer Institute funding — then, the largest monetary increase in funding for NCI to date.
• Clinical Trials Coverage, 2000. President Bill Clinton's issuance of an executive memorandum on June 7, 2000 was directly attributable to NCCS's advocacy. This new policy guarantees Medicare beneficiaries who enroll in approved, high-quality clinical trials will have their routine patient care costs covered by Medicare.
• Cancer Advocacy Now!, 2004. NCCS launched CAN! to assure that America’s 10 million cancer survivors and the millions more 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. CAN! advocates for cancer-related issues including broader access to high-quality treatments, optimal supportive care and clinical trials; Medicare coverage and reimbursement for anti-cancer drugs and treatments; timely review and approval of next-generation therapies by the Food & Drug Administration (FDA); and improving palliative care and symptom management.

NCCS President

As a 34-year survivor of two bouts with cancer (Hodgkin's disease) Ellen Stovall is the President & CEO since 1992. Prior to that, as NCCS Vice-Chair, she co-edited the Institute of Medicine’s report entitled, From Cancer Patient to Cancer Survivor: Lost in Transition, to address the problems facing adult cancer survivors. ^[3] This report is also published in a book (ISBN 0309095956).

Additional roles^[4]

• Vice-Chair, National Cancer Policy Board, Institute of Medicine to advise, among others, the government, health care industry, and academic research and care institutions
• Vice-Chair of the National Cancer Policy Board’s Committee on Cancer Survivorship
• Member, National Cancer Policy Forum, Institute of Medicine - Established in May 2005 to succeed the National Cancer Policy Board
• Vice-Chair, Robert Wood Johnson Foundation’s National Advisory Committee to Promote Excellence in Care at the End of Life
• Vice-Chair, National Advisory Committee for Pursuing Perfection: Raising the Bar for Health Care Performance
• Founder & President, THE MARCH… Coming Together to Conquer Cancer, since 1997
• National Cancer Advisory Board (NCAB), appointed in 1992 from President Bill Clinton for a six-year term of service
• Board of Directors, National Committee for Quality Assurance (NCQA) and The Leapfrog Group ^[5]
• Member, the Steering Committee^[6], National Quality Forum (NQF) for discussion of the quality of cancer care, as well as the National Cancer Institute, American Association for Cancer Research and the American Society of Clinical Oncology.
• Director, Cancer Leadership Council in 1993

She is frequently called upon to advise Presidential Administration and U.S. Congressional staff on a variety of cancer-related policy issues, most especially improving access to quality cancer care.^[7]

The NCCS Staff additionally includes a Board of Directors, with Executive Committee, Board Members, and Board Advisors, including Judge Tucker L. Melancon (board member).^[8]

See also

• American Cancer Society
• National Breast Cancer Coalition
• Marie Curie Cancer Care
• Inflammatory Breast Cancer Association
• Breast Cancer Action
• President's Cancer Panel
• Canadian Cancer Society
• CanTeen (Australian organization for young cancer patients - ages 12-24)
• The Cancer Council Australia
• CALGB (Cancer and Leukemia Group)
• Lance Armstrong Foundation