History & Milestones
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Never doubt that a small group of thoughtful, committed people
can change the world. Indeed, it is the only thing that ever has.
Margaret Mead, anthropologist
History
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.
More recently, in 2004, NCCS launched Cancer Advocacy Now!™ 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.
As the oldest survivor-led cancer advocacy organization in the country, NCCS understands firsthand what it’s like to experience cancer and is a highly respected voice of people living with, through and beyond cancer. 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. Patient education is also 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. Call 1.877.NCCS.YES or browse our website for more information about NCCS, its advocacy, and patient education materials.
Milestones
- Founded, 1986. 25 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.
- 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 CancerTM, 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.
- 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.
- Comprehensive Cancer Care Improvement Act (CCCIA). NCCS drafted legislation that was first introduced in May 2006. If passed, the bill would would advance a system of integrated cancer care and improved communication between patients and their health care teams regarding treatment options and follow-up care. Since its introduction, the bill has garnered bipartisan support in the House in addition to endorsements from cancer centers, professional medical societies, and patients groups. NCCS is committed to seeing this legislation become a reality for America’s cancer survivors. Learn about ways that you can help us accomplish this goal.
- 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 will be expanded to provide strategic information and education, including self-advocacy skills, to people diagnosed with multiple myeloma, adult leukemia, and non-Hodgkins lymphoma. An additional module will be created for patients considering a bone marrow transplant, a specific treatment option for hematological cancers.
