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Thursday, January 7, 2016

Remembering Cancer Advocate Ellen Stovall: 1946-2016

 

BY PEGGY EASTMAN

 

Longtime Oncology Times Editorial Board member Ellen Stovall died on Jan. 5 of cardiac complications related to her cancer treatments.

 

From 1992 to 2008 Ellen was President and CEO of the National Coalition for Cancer Survivorship (NCCS), the oldest survivor-led organization advocating for quality health care for all Americans. A 45-year survivor of three bouts with cancer, she was Senior Health Policy Advisor to NCCS at the time of her death. She worked tirelessly on behalf of cancer patients, advocating for comprehensive written care plans that reflect the continuum of cancer care, including treatment summaries and follow-up care plans.

 

Ellen was also my friend, and we shared a personal connection. She was from Honesdale, Pennsylvania, as was my late husband, Jim Eastman. Her parents and my in-laws knew each other. Honesdale is a small town nestled in the northeastern corner of Pennsylvania; in snowy winter months it resembles a scene from a Currier and Ives print. Ellen always treasured her roots, and we spoke fondly together of our visits to Honesdale.

 

Over the years I saw Ellen at cancer meetings as I covered them as a science writer for OT. As the number of cancer survivors increased, so did Ellen’s influence. As a speaker, she gave voice to the concerns and needs of patients along the cancer care continuum. She was an eloquent spokesperson, especially for those who were too stunned by a cancer diagnosis or too overwhelmed by the complexity of the health care system to speak up for themselves.

 

Ellen could cut through Washington’s alphabet soup of acronyms and speak clearly about complicated topics to the lay public as well as to oncologists, members of Congress and laboratory scientists. I heard her do this many times, deftly adjusting her delivery to her audience. 

           

A founding member of the National Cancer Policy Board of the prestigious Institute of Medicine and its successor, the National Cancer Policy Forum, Ellen co-chaired the influential Institute of Medicine report “From Cancer Patient to Cancer Survivor: Lost in Transition.” That report highlighted the challenges, uncertainties and fears facing cancer patients as they complete their active treatment and change to survivorship status. 

           

Ellen was generous with her time; she served as Vice Chair of the Robert Wood Johnson Foundation’s National Advisory Committee to Promote Excellence in Care at the End of Life. She also served on the boards of directors of the National Committee for Quality Assurance and the Leapfrog Group, and she was a member of a committee of the National Quality Forum working to establish consensus around cancer quality measures. She also served on several advisory panels, working groups and committees of the National Cancer Institute (NCI), American Association for Cancer Research and the American Society of Clinical Oncology. She served six terms on the NCI’s National Cancer Advisory Board, an appointment given her by President Bill Clinton.

 

I knew that Ellen had had cardiac complications from her cancer treatments, because she told me. But if she sometimes found her responsibilities and demanding schedule tiring, it never showed. She was always composed, always prepared, always on top of the complex issues facing cancer patients and survivors. She had high standards, believing that patients and survivors deserved the very best care and nothing less.

 

After her passing, NCCS Chairman of the Board Sandy Welton stated: “To many of us—likely thousands—she was a trustworthy friend, a mentor, a collaborator, a visionary. Ellen was all of this and more, and always with a generous heart, a keen mind, a quick wit, and unswerving ethics.”

 

Shelley Fuld Nasso, MPP, the NCCS CEO, is committed to carrying on Ellen’s legacy of advocacy for cancer patients. The NCCS has posted information on the Ellen Stovall Memorial Fund on its web site, www.canceradvocacy.org.