The National Coalition for Cancer Survivorship - Changing the Lexicon of Cancer
"Every day, approximately 4,000 Americans become survivors when they hear the words, 'You have cancer,'" says Ellen Stovall, president and CEO of the National Coalition for Cancer Survivorship (NCCS), a survivor-led advocacy organization that targets change at the federal level.
"Twenty years ago the founders of NCCS selected the term 'survivor' to describe those living with, through, and beyond cancer. But the term is not reserved only for those of us who have been diagnosed with the disease," Ms. Stovall continues. "It includes all those who support the person with cancer: families, friends, and caregivers. By sharing the burden that cancer places on each of us, we're able to move beyond the diagnosis and focus on living meaningful, productive lives despite it."
Ms. Stovall should know. After surviving two bouts of Hodgkin lymphoma - the first of which was diagnosed at stage IV only 6 weeks after she had become a new mother - and now leading this advocacy organization for the past 14 years, she's seen firsthand how partnership in the cancer community can make a significant difference in patients' access to quality cancer care.
This year marks the 20th anniversary for NCCS. To celebrate the occasion, the coalition paid tribute to 20 individuals at an awards gala held April 26 in Washington, D.C., where they were recognized as Rays of Hope.
Among the awardees was NCI's Dr. Julia Rowland, who directs the Office of Cancer Survivorship in the Division of Cancer Control and Population Sciences. "We honored Dr. Rowland as one of NCCS's Rays of Hope for her outstanding accomplishments as a scientist, clinician, and her long-standing dedication as an ardent advocate for quality behavioral and psychosocial research," explains Ms. Stovall.
"It's a deeply humbling privilege to be among such an august group of people," says Dr. Rowland, who began working with NCCS shortly after it was founded, when she was the director of a post-treatment resource program that she started for patients at Memorial Sloan-Kettering Cancer Center. "NCCS realized long ago that by talking about survivorship from the day of diagnosis, not only would this give patients, caregivers, and family members hope, but it would force the medical establishment to address quality-of-life issues for patients undergoing treatment."
NCCS is credited with numerous other changes, many of which have been made at the federal level. For example, the founding chair, Barbara Hoffman - herself a cancer survivor and lawyer who was concerned with issues of discrimination against patients with cancer - helped write the Americans for Disabilities Act in 1990. NCCS later contributed to the Medicare Cancer Coverage Improvement Act of 1993 and the Health Insurance Portability & Accountability Act of 1996, and was credited with President Clinton's executive memorandum in 2000 that guaranteed routine patient care costs coverage for Medicare beneficiaries who enroll in clinical trials.
And at NCI, the Office of Cancer Survivorship that Dr. Rowland now leads was created in 1996 after then-director Dr. Richard Klausner read the NCCS report, Imperatives for Quality Cancer Care: Access, Advocacy, Action and Accountability.
To increase the effectiveness of cancer survivors in addressing national issues, in 2004 NCCS launched Cancer Advocacy Now!™, a grassroots network that trains survivors in legislative advocacy and provides them with Web-based forums where they can describe how cancer has affected their lives and how they have coped with it.
"I feel so fortunate to have found a cause and an organization that have truly given me my life's work," says Ms. Stovall. "I learned about NCCS while I was dealing with my second diagnosis of Hodgkin's disease and a good deal of uncertainty about my long-term prognosis. I picked up an NCCS newsletter in my doctor's office and remember vividly the tagline at the top of page, which read, 'From the moment of diagnosis and for the balance of life, an individual diagnosed with cancer is a SURVIVOR.' From that day on, I was hooked on the organization and the incredibly wonderful people who, to this very day, continue to dedicate themselves to NCCS and its mission to advocate for quality cancer care for all."
By Brittany Moya del Pino