Timeline of NCCS Achievements
Founded – 1986
Twenty-three 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 (NCCS). The founders adopted NCCS’s charter states, “from the moment of diagnosis and for the balance of life, an individual diagnosed with cancer is a survivor.” This definition would go on to be accepted as the standard in the cancer community.
Americans with Disabilities Act (ADA) – 1990
NCCS Founding Chair, Barbara Hoffman, JD, testifies before Congress on how to include cancer survivors within the protection of the Americans with 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 founds the Cancer Leadership Council, a patient-centered forum of national advocacy organizations addressing public policy issues in cancer, by convening the 8 existing cancer patient advocacy groups. By 2006, the CLC has grown to include 29 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 including cancer survivors, caregivers, health care professionals, scientists, community leaders, policy experts, legislators, government officials, members of the clergy, and the media. The forum is the first-ever meeting on cancer survivorship of its kind.
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 – 1995
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, DC 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. Access to Cancer Therapies, 2000-2003. NCCS continues to pursue coverage for oral chemotherapy under Medicare Part B. At the close of the 107th Congress, three-quarters of the House and more than half the Senate had co-sponsored the bill. The bill was reintroduced on March 13, 2003 as HR 1288.
Institute of Medicine (IOM) Reports – 2001-2007
NCCS played a leadership role or participated in several IOM initiatives related to quality care and survivorship. Then-NCCS CEO Ellen Stovall served as Vice-Chair of the IOM Committee on Survivorship, co-edited the IOM Report on Adult Cancer Survivorship, was the principal reviewer for two IOM reports and was the lead external
advisor for a report on psychosocial issues and cancer.
Major IOM Reports NCCS Contributed To:
- Ensuring Quality Cancer Care
- Improving Palliative Care for Cancer
- From Cancer Patient to Cancer Survivor: Lost in Transition.
- Childhood Cancer Survivorship: Improving Care and Quality of Life
- Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs
Access to Oral Cancer Therapies – 2000-2003
NCCS invested three years in the pursuit of Medicare coverage for oral chemotherapy. 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. Ultimately the measure passed in the Medicare Modernization Act of 2003.
Cancer Advocacy Now!™ – 2004
NCCS launched Cancer Advocacy Now! to assure that America’s 12 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. To date, more than 25,000 have joined the Cancer Advocacy Now! network.
Cancer Survival Toolbox® – 2005
NCCS surpasses distribution of 500,000 Cancer Survival Toolboxes to cancer survivors across the country, since its introduction in 1998. Toolboxes have been distributed to individuals and cancer centers in all 50 states, the District of Columbia and Puerto Rico.
Cancer Quality Alliance – 2005-2008
Following a series of meetings initiated by NCCS with the Medical Director of the Center for Medicare and Medicaid services (CMS), NCCS and the American Society for Clinical Oncology formed the Cancer Quality Alliance (CQA)—a collaboration among 28 organizations to encourage the sharing and implementation of cancer quality measures, tools, and practical programs into cancer practice.
FDA Citizen Petition – 2006-2009
NCCS and ASCO filed a Citizen Petition with the FDA requesting clarity, procedures and standards for companies that may be able to make investigational therapies available to patients who have exhausted their treatment options. In August 2009, the FDA finalized two regulations that will improve patient access to investigational drug therapies.
Hematologic Cancers Strategies for Education and Outreach – 2007
The Centers for Disease Control and Prevention (CDC) awarded NCCS its first federally-funded grant for more than $1.3 million to fund a five-year project based on NCCS’ award-winning Cancer Survival Toolbox®. The audio program provides strategic information and education, including self-advocacy skills, to people diagnosed with multiple myeloma, non-Hodgkin lymphoma, chronic myelogenous leukemia and chronic lymphocytic leukemia. Additionally, NCCS has also created a program for patients considering a bone marrow transplant; a specific treatment option for hematological cancers.
“Blueprint” for Quality Cancer Care – 2008
NCCS played a leadership role in a creation of a “Blueprint” for quality cancer care, which was first published in the journal Cancer in September 2008. Conceptualized and written through the collaborative effort of members of the Cancer Quality Alliance, the Blueprint will be widely available as a teaching tool and a guide to how the health care system can provide the best care to people living with, through and beyond a cancer diagnosis.
Commission on Cancer – 2010
NCCS is one of three patient-centered organizations invited to a membership in the Commission on Cancer (CoC) of the American College of Surgeons (ACOS) resulting in the first ever patient-centered COC Accreditation Standards requirements care plans, psychosocial assessment and patient navigator.
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. NCCS is very pleased that Representatives Capps and Charles Boustany (R-LA) have reintroduced the legislation (H.R. 3705) in the House and looks forward to working with them and other members of Congress to gain further support for the legislation in 2012
Planning Actively for Cancer Treatment (PACT) Act – 2013
NCCS is actively supporting legislation introduced in June 2013 by Congresswoman Lois Capps (D-CA) and Congressman Charles Boustany, Jr., M.D., (R-LA). The Planning Actively for Cancer Treatment (PACT) Act (H.R. 2477) would significantly improve the quality and coordination of care for Medicare patients with cancer. The bill is the top federal policy priority of the National Coalition for Cancer Survivorship (NCCS).