Oct. 1986: Dr. Fitzhugh Mullan, a co-founder of the National Coalition for Cancer Survivorship (center), leads the NCCS founding meeting.
In 1986, the founders of NCCS set out to establish an organization that would 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 mission. 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.
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.
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. Since that time, we have remained in the Washington, DC area and continued to advocate for the nearly 17 million cancer survivors living in the United States.
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).
NCCS Founding Chair, Barbara Hoffman, JD, testifies before Congress on how to include cancer survivors within the protection of the Americans with Disabilities Act.
NCCS becomes one of five founding organizations of the National Breast Cancer Coalition.
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.
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 2020, the CLC has grown to include 29 leading patient advocacy, professional, and volunteer organizations.
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.
NCCS launches one of the first Internet sites directing users to credible, online resources on cancer treatment and survivorship.
NCCS publishes the first document to address quality cancer care from the patient’s perspective (based on the First National Congress on Cancer Survivorship).
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.
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.
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.
President Clinton’s issuance of an executive memorandum on June 7, 2000 was directly attributable to NCCS’s advocacy. This new policy guaranteed Medicare beneficiaries who enroll in approved, high-quality clinical trials will have their routine patient care costs covered by Medicare.
NCCS developed and launched a semi-annual roundtable meeting to bring together experts in the field of cancer, along with survivors and advocates to discuss the most pressing policy issues impacting cancer care.
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.
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.
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.
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.
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.
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.
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 provided strategic information and education, including self-advocacy skills, to people diagnosed with multiple myeloma, non-Hodgkin lymphoma, chronic myelogenous leukemia and chronic lymphocytic leukemia.
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 was 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.
NCCS was 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.
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
NCCS developed a program for survivors and caregivers to learn about pressing policy issues that affect quality cancer care in order to be engaged as advocates in public policy around the needs of cancer survivors. The webinars, e-newsletters, online forum, and conferences for CPAT members offer advocates different ways to learn and to discuss current issues, programs, and policies that affect the cancer community and to take action as appropriate.
NCCS is actively supporting bipartisan legislation introduced in June 2015 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. 2846) would significantly improve the quality and coordination of care for Medicare patients with cancer.
NCCS convened 37 patient advocacy groups to oppose eliminating pre-existing condition protections in the AHCA, which would threaten cancer patients’ and survivors’ ability to purchase quality, affordable health insurance.
NCCS developed an advocate-led program to improve survivorship care in local communities around the country. The program centers around Elevate Ambassadors, a group of advocates who develop programs/projects to implement in their local area
Congressman Mark DeSaulnier (D-CA) and Congressman Buddy Carter (R-TX) reintroduced the bipartisan H.R. 3835 Cancer Care Planning and Communications Act, or CCPCA. Rep. DeSaulnier is a cancer survivor and Rep. Carter is a pharmacist. Together, they share an understanding of the physical and emotional benefits of care planning for patients and their families facing a cancer diagnosis.
