National Coalition for Cancer Survivorship: A survivor-led advocacy group that works on behalf of the millions of cancer survivors and the millions more touched by this disease. Founded in the US in 1986, NCCS issued the following 12 principles as Imperatives for Quality Cancer Care: Access, Advocacy, Action and Accountability:
Declaration of Principles
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.
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.
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.
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.
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.
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.
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.
Systematic long-term follow-up should generate data that contribute to improvements in cancer therapies and decreases in morbidity.
The responsibility for appropriate long-term medical care must be shared by cancer survivors, their families, the oncology team, and primary care providers.
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.
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.
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.