Healthy Living

Roles of the National Coalition for Cancer Survivorship

The National Coalition for Cancer Survivorship (NCCS) is a nonprofit, cancer advocacy organization that is located just outside of Washington D.C. To date, it is the oldest survivor-led cancer advocacy organization in the United States.

The NCCS represents millions of Americans who share a common experience, that is, the cancer survivorship experience. The organization deals with the entire cancer experience, from being diagnosed with cancer to living beyond diagnosis, and continuously strives to enforce policy changes at a national level. In 1971, there were 3 million cancer survivors in the United States. By 2014, there were 14.5 million survivors and at this current rate, the number of cancer survivors in the United States is expected to grow to 19 million by 2024. “NCCS challenged the status quo of cancer care over the past thirty years, increasing the quality of care for millions of patients and their families. The need for that advocacy is as relevant as ever, and is why NCCS continues to ensure cancer care further incorporates patients’ needs and values,” said Shelley Fuld Nass, CEO of the NCCS.

Initial mission of the NCCS

The NCCS was founded in Albuquerque, New Mexico in 1986. The founders visualized creating an organization that would replace the definition ‘cancer victim’ with ‘cancer survivor’. “After the electricity of coming together—sharing our experiences, sharing our passion, and our vision for a survivorship place—we formed the NCCS and went forth to make it part of the public discourse in America and the treatment experience for as many survivors, as possible,” said Dr. Fitzhugh Mullan, Co-Founder and Founding President of the NCCS.

Nowadays, ‘cancer survivor’ is a definition used by the U.S. National Cancer Institute’s Office of Cancer Survivorship (created in 1996). In 1992, the NCCS relocated its offices to just outside of Washington D.C. in order to be closer to organizations that play similar roles in educating policymakers and government agencies on cancer survivorship. In 1993, NCCS gathered together patient advocates to create the Cancer Leadership Council (CLC). To this day, the CLC is a patient-centered forum that meets once a month to discuss and address public policy issues relating to cancer. In 1995, NCCS developed 12 principles as Imperatives for Quality Cancer Care: Access, Advocacy, Action, and Accountability, which include the following.

Principle 1

“People with cancer have the right to a system of universal health care. This access should not be precluded because of preexisting conditions, genetic or other risk factors, or employment status.”

Principle 2

“Quality cancer care should be available in a health care system whose standards and guidelines are developed in consideration of treating the whole person with cancer. Health care plans must regard the cancer patient as an autonomous individual who has the right to be involved in decisions about his or her care.”

Principle 3

“Standards of cancer care should be driven by the quality of care, not only by the cost of care, and should include participation in clinical trials and quality of life considerations.”

Principle 4

“All people diagnosed with cancer should have access to and coverage for services provided by a multidisciplinary team of care providers across the full continuum of care. Health care plans should be held accountable for timely referral to appropriate specialists when symptoms of cancer or its recurrence may be present.”

Principle 5

“People with cancer should be provided a range of benefits by all health care plans that includes primary and secondary prevention, early detection, initial treatment, supportive therapies to manage pain, nausea, fatigue and infections, long-term follow-up, psychosocial services, palliative care, hospice care, and bereavement counseling.”

Principle 6

“People with histories of cancer have the right to continued medical follow-up with basic standards of care that include the specific needs of long-term survivors.”

Principle 7

“Long-term survivors should have access to specialized follow-up clinics that focus on health promotion, disease prevention, rehabilitation, and identification of physiologic and psychosocial problems. Communication with the primary care physician must be maintained.”

Principle 8

“Systematic long-term follow-up should generate data that contribute to improvements in cancer therapies and decreases in morbidity.”

Principle 9

“The responsibility for appropriate long-term medical care must be shared by cancer survivors, their families, the oncology team, and primary care providers.”

Principle 10

“The provision of psychosocial services must be safeguarded and promoted. Persons diagnosed with cancer should receive psychosocial assessments at critical junctures along the continuum of cancer care to determine availability of needed support and their ability to seek information and to advocate on their own behalf.”

Principle 11

“Psychosocial research is integral to comprehensive cancer care and, as such, psychosocial outcome measures should be included in all future clinical trials. The importance of this research and its application and transfer to oncology care plans should be recognized and encouraged.”

Principle 12

“Cancer survivors, health care providers and other key constituency groups must work together to increase public awareness; educate consumers, professionals, and public policy makers; develop guidelines and disseminate information; advocate for increased research funding; and articulate for and promote survivors' rights.”

In 1998, the NCCS led the nationwide campaign ‘THE MARCH...Coming Together to Conquer Cancer’, which aimed to make the cause, care, and cure of cancer a top health priority among the nation. In 2004, it launched ‘Cancer Advocacy Now!™’ to ensure that all 14 million cancer survivors in the United States have a voice. In 2009, a treatment summary program, known as Journey Forward, was launched in association with three other organizations.

“While we hope for the cure … We must focus on the care.”

To this day, credible patient information and patient education remain a top priority for the NCCS. Its first publication included the importance of doctor/patient communications, followed by publications on informed patients and survivors’ rights. The NCCS’s mission is to advocate for quality cancer care for all individuals impacted by cancer. Through its active work with policymakers and legislative officials, NCCS aims to be the voice for all cancer patients and survivors. Moreover, the organization strives to ensure that the demands and needs of quality cancer care and quality of life following diagnosis are met, by actively participating in forums where public policies are enforced at a national level. So far, NCCS has developed a reputation for being the ‘go to’ organization when it comes to dealing with the psychological, psychosocial, and economic aspects of a cancer diagnosis. Their motto is: “While we hope for the cure…We must focus on the care.”

“An organization such as NCCS has existed in a changing policy environment. I think it’s fair to say we were inspired by the early AIDS activists, who were in the field already in 1986 showing how you could speak up for your illness. It is that same spirit of the empowered patient who brings the wisdom and the politics of the experience of having had cancer to public attention,” said Dr. Mullan. “Health equity and attention to the disparities of care… are part of what a health system, in a country whose arc is bending towards justice, we like to think would improve over time. And we hope the cancer survivorship movement is at the forefront of those who argue for and help a society achieve better equity and fuller coverage. So, it’s been thirty good years, we expect 300 more, if cancer is around that long. We expect it to be beaten down by then. But certainly, we’ve made great progress in these thirty years,” he concluded.