Loading
Twenty-three people met in Albuquerque in October 1986 and set out to replace the phrase "cancer victim" with "cancer survivor". The definition they chose, a survivor from the day of diagnosis for the rest of life, is the one the National Cancer Institute uses today.
The organisation's own history records the founding: in 1986, twenty-three leaders with expertise in cancer research, community-based support programmes, cancer information services and cancer advocacy gathered in Albuquerque, New Mexico and founded the National Coalition for Cancer Survivorship. Fitzhugh Mullan, who had written "Seasons of Survival" the year before, was its founding president. Barbara Hoffman JD was founding chair and testified to Congress in 1990 on including cancer survivors in the protection of the Americans with Disabilities Act. Ellen Stovall led the organisation as chief executive from 1992 to 2008.
The founders' stated aim, in their own words, was to "replace the words 'cancer victim' with 'cancer survivor,' and bring about a different notion of the cancer experience". The definition they settled on, a survivor from the time of diagnosis and for the balance of life, is now the National Cancer Institute's definition, which credits it explicitly as adapted from the coalition; the Institute's own wording adds that the term "is meant to capture a population of those with a history of cancer rather than to provide a label that may or may not resonate with individuals". That qualification matters, and the record on the word itself covers why many people treated for cancer decline it.
The practical consequences were institutional. In 1995 the coalition held the first national congress on cancer survivorship and published the first document to set out quality cancer care from the patient's point of view. Its history page records that in 1996, after reading that document, Imperatives for Quality Cancer Care, the National Cancer Institute's director Richard Klausner established the Office of Cancer Survivorship, which is still the body that counts how many survivors there are and funds research into what happens to them. The coalition also held one of two consumer seats on the Institute of Medicine's National Cancer Policy Board from 1996, which is the committee that produced "Lost in Transition" ten years later with Stovall as a vice-chair and co-editor.
This is one of the clearest cases in oncology of advocacy changing what gets measured. A word was changed, a definition was adopted by a national institute, an office was created to use it, and a report followed that invented an instrument now written into accreditation standards. The honest counterweight, on the record for that report, is that the instrument itself has not been shown in randomised trials to improve outcomes.
The organisation has since renamed itself. Its website now carries the banner "NCCS is now Cancer Nation" and the history page is headed "Our History - Cancer Nation (Formerly NCCS)". OnCo did not find a date for the change on that page and does not state one.
Shares Lost in Transition: the 2006 report that defined survivorship care, and the care plan it invented, Recovery and rejuvenation roadmap: cure is not enough → survivorship gets a name → the cohorts that measured the cost → exercise proven as treatment → biological ageing measured and sold → repair, if anyone funds it and the tags rejuvenation, survivorship, history.
Shares Recovery and rejuvenation roadmap: cure is not enough → survivorship gets a name → the cohorts that measured the cost → exercise proven as treatment → biological ageing measured and sold → repair, if anyone funds it and the tags rejuvenation, survivorship.
Shares Recovery and rejuvenation roadmap: cure is not enough → survivorship gets a name → the cohorts that measured the cost → exercise proven as treatment → biological ageing measured and sold → repair, if anyone funds it and the tags rejuvenation, survivorship.
Shares Recovery and rejuvenation roadmap: cure is not enough → survivorship gets a name → the cohorts that measured the cost → exercise proven as treatment → biological ageing measured and sold → repair, if anyone funds it and the tags rejuvenation, survivorship.
Shares Recovery and rejuvenation roadmap: cure is not enough → survivorship gets a name → the cohorts that measured the cost → exercise proven as treatment → biological ageing measured and sold → repair, if anyone funds it and the tags rejuvenation, survivorship.
Shares Counting the people who live after cancer, and why the number is not a detail, Cure is not enough: when late effects stopped being an afterthought, Recovery and rejuvenation roadmap: cure is not enough → survivorship gets a name → the cohorts that measured the cost → exercise proven as treatment → biological ageing measured and sold → repair, if anyone funds it and the tags rejuvenation, survivorship.
Shares The word survivor, and why the vocabulary is not a detail and the tags rejuvenation, survivorship.
Shares the tags rejuvenation, survivorship.