NCCS Marks 30 Years of Cancer Survivorship Advocacy

On October 13, 2016, the National Coalition for Cancer Survivorship (NCCS) recognized its 30th anniversary of advocating to improve cancer care. Current and past NCCS staff and board members, cancer survivors, caregivers, and representatives from throughout the cancer community attended to commemorate this milestone.

Today as the nation’s oldest survivor-led advocacy organization, the event highlighted NCCS’ many contributions to changing the culture of cancer care: by replacing “cancer victim” with “cancer survivor,” creating the concept of “survivorship,” and defining someone as a “survivor” from the time of diagnosis and for the balance of life, now the norm for the cancer community. “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,” said NCCS CEO Shelley Fuld Nasso. “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.”

A Look Back at 30 Years

NCCS Co-Founder and Founding President Fitzhugh Mullan, MD was at the event to deliver remarks about the milestone. Dr. Mullan was one of 22 cancer survivors who convened a three-day meeting on October 25, 1986 in Albequerque, NM. In his remarks, Dr. Mullan said, “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.”

The meeting was soon called by many as the “Constitutional Convention” of the cancer survivor movement. The founders drafted a charter for the nascent organization, adopting a list of objectives, with the primary goals being to raise national awareness of cancer survivorship, provide a clearinghouse for materials that educate survivors on their rights, and to advocate for research in the field of survivorship.

NCCS has had many successes in working to achieve its early objectives, one of many being the publication of The Imperatives for Quality Cancer Care, which directly led to the creation of the Office of Cancer Survivorship at the National Cancer Institute. “An organization such as NCCS has existed in a changing policy environment,” Dr. Mullan said. “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.” He continued, “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.”

Dr. Mullan also turned his eye to the future of cancer care, stating that more attention is being paid to the long-term side effects of cancer treatment, and that the treatment itself is becoming more personalized. Dr. Mullan closed with a comment about achieving equity in cancer care. He said, “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.”

Also at the reception, NCCS presented the inaugural Ellen Stovall Award for Leadership in Patient-Centered Care. The award was created to honor former NCCS CEO Ellen Stovall, who led the organization for more than twenty years and passed away in January 2016 from complications related to her cancer treatments.

The award recipient was Douglas W. Blayney, MD, FACP, past president of the American Society of Clinical Oncology (ASCO) and who worked closely with Ellen Stovall for many years. Together they helped initiate the ASCO Quality Symposium, which has become the leading cancer quality meeting in the world.

Shelley Fuld Nasso Remembers Ellen Stovall

NCCS CEO Shelley Fuld Nasso thanked the attendees to the NCCS 30th anniversary reception, many of them current and former NCCS staff and colleagues of Ms. Stovall, for their contributions to the field of cancer survivorship. “Everyone in this room today has helped in some way have an impact on our work over the past 30 years and on the lives of people with cancer,” Ms. Fuld Nasso said.

She continued, “As we commemorate this milestone in our history, we also, of course, have to recognize the devastating loss that we at NCCS felt, and all of us in the cancer community, when Ellen Stovall passed away earlier this year—our former CEO, dear friend, and mentor… Ellen left an indelible mark on all of us… She’s really our guiding light at NCCS and I often find myself thinking, ‘What would Ellen do?'” After a short video tribute to Ellen’s life and advocacy, Shelley invited Ellen Stovall’s son, Jonathan Stovall, on stage to present the award named in his mother’s honor.

In her introduction, Shelley Fuld Nasso highlighted the collaborative efforts of Dr. Blayney and Ms. Stovall. “Dr. Blayney did not shy away from Ellen’s demands that much more needed to be done to ensure access to patient-centered care, or her insistence that patient satisfaction with their cancer care really did matter. Instead, he was a dedicated partner in these efforts.” She continued, “When Ellen and Doug were working shoulder to shoulder on a wide range of cancer quality improvement efforts, they were pioneers. Not all their peers supported, or even saw the point of all their dogged efforts to improve quality.”

Dr. Blayney accepted the inaugural award and honored Ms. Stovall’s work and advocacy for cancer survivors in his remarks. “Ellen was a living reminder of cancer survivorship,” said Dr. Blayney. “She lived her life with purpose and never-failing grace. She articulated for so many audiences, the purpose of our work, and reminded us that it was always about the patient. I am honored with the Stovall award.”

Douglas W. Blayney, MD, FACP is a professor of medicine at the Stanford Comprehensive Cancer Center. His clinical interest is breast cancer, and his operational interests and research focuses on quality improvement in cancer care systems, improvement of the patient experience, and the optimum use of information technology to enhance these missions. He is past president of the American Society of Clinical Oncology (ASCO), and was the founding editor-in-chief of ASCO’s Journal of Oncology Practice.

The Ellen Stovall Award: 2017 and Beyond

At the reception, NCCS announced that beginning in 2017, the Ellen Stovall Award will be an annual, nationwide competition. It will be the first call to action that specifically urges cancer survivors and caregivers to nominate providers who are making dramatic improvements in how they care for cancer patients and their families. With recent changes in care towards value-based reimbursements and the Oncology Care Model, NCCS seeks to highlight providers who are proactively and successfully embracing patient-focused care that is recognized by the very patients they are serving. Dr. Blayney will serve as co-chair of an advisory committee to establish the award’s criteria and evaluate nominations.