National Coalition for Cancer Survivorship
From Wikipedia, the free encyclopedia
-
"NCCS" redirects here. For other uses, see NCCS (disambiguation).
The National Coalition for Cancer Survivorship (NCCS) is the oldest survivor-led cancer advocacy organizations in the country and a voice at the federal level, advocating for quality cancer care for all Americans and empowering cancer survivors. Founded in 1986, 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 seeks to involve constituents from across the country in federal cancer-related issues.
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.
[edit] History & Timeline
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.
CanSearchTM 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 CancerSM, 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, 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 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.
[edit] NCCS Staff
Ellen L. Stovall President & CEO
Ellen L. Stovall is a 34-year survivor of two bouts with cancer. In 1992, Ms. Stovall became President & CEO of the National Coalition for Cancer Survivorship (NCCS). Ms. Stovall also is a member of the Institute of Medicine’s (IOM) National Cancer Policy Forum, established in May 2005 to succeed the National Cancer Policy Board. This Forum is designed to allow government, industry, academic and other representatives to meet and privately discuss public policy issues that arise in the prevention, control, diagnosis and treatment of cancer. Prior to the establishment of the Forum, Stovall was Vice-Chair of the National Cancer Policy Board’s (NCPB) Committee on Cancer Survivorship. As vice-chair of the survivorship committee, Stovall co-edited the Institute of Medicine’s recently released report titled, From Cancer Patient to Cancer Survivor: Lost in Transition, which addressed the issues adult cancer survivors face. She also serves as Vice-Chair of The Robert Wood Johnson Foundation’s National Advisory Committee to Promote Excellence in Care at the End of Life and as the Foundation’s Vice-Chair of its National Advisory Committee for Pursuing Perfection: Raising the Bar for Health Care Performance. In 1997, Ms. Stovall concurrently served as Founder and President of THE MARCH… Coming Together to Conquer CancerSM. Through her leadership, this national public awareness campaign focused both national and regional media attention on the issues of cancer research and quality cancer care for all Americans. Ms. Stovall served a six-year term on the National Cancer Advisory Board (NCAB), an appointment she received in 1992 from President Clinton. Ms. Stovall currently serves on the Board of Directors of the National Committee for Quality Assurance (NCQA), The Leapfrog Group and participates on a Steering Committee of the National Quality Forum (NQF) to establish consensus around Cancer Care Quality Measures. Ms. Stovall sits on several advisory panels, working groups and committees of the National Cancer Institute (NCI), American Association for Cancer Research (AACR) and the American Society of Clinical Oncology (ASCO). Recognizing a need for the voice of cancer survivors to be heard during the national debate over health care reform, the Cancer Leadership Council (CLC) was convened in 1993 under her direction. Today, Ms. Stovall is frequently called upon to work with Administration and Congressional staff on a variety of cancer-related policy issues, most notably access to quality cancer care.
