I live my life and take pleasure in the littlest things. Cancer has taught me humility, and if there’s anything I’ve learned, it’s about not sweating the small stuff.
Passion is a much-needed virtue in one who seeks to change the world for the better. When you combine intelligence, stamina, iron-willed determination, the grace of an ambassador, and simple human likability with passion, you get that rare person who can turn words and ideas into reality. Such a person was Ellen Stovall, nationally regarded cancer advocate whose tireless work helped drive the survivorship movement that focused on adapting to life with, through, and beyond cancer, rather than treating a diagnosis as a death sentence. Ms. Stovall died on January 5, 2016, at age 69.
Ms. Stovall was reared in Honesdale, Pennsylvania, in a loving family devoted to community service and leadership. Her mother volunteered for the Red Cross, and her aunt was a Girl Scout leader. Other relatives served as lay rabbis in Honesdale’s lone synagogue. “In my family, becoming the president of this and chair of that was a natural way of being,” said Ms. Stovall during an interview.
She briefly studied music at West Chester State College and then spent 5 years at Penn State University, as she described, moving from one field of study to the next, largely because “I didn’t feel well.” Her malaise was caused by the nascent disease that would eventually change her life forever.
By then, Ms. Stovall had married and moved to Washington, DC. Soon after giving birth to her son, she was diagnosed with Hodgkin lymphoma. She was 24 years old, a young mother with cancer and no support groups to lean on. That disparity of care would plant the seed for her life’s work.
Resolve to Make a Difference
After her final treatments, Ms. Stovall founded a support group for young cancer survivors. The uncertainty of survivorship spurred her into further single-minded action. She beat the pavement, seeking donations to support the Leukemia & Lymphoma Society, and became a full-time volunteer at the American Cancer Society. She attributed her resolve to make a difference, in part, to the mortality issue all survivors share. “I didn’t know how long I’d be around, but I knew this is how I wanted to spend my time,” she related during an interview.
Unfortunately, Ms. Stovall’s cancer recurred. Seeking counseling to help her cope, she saw a psychiatrist, and while in the office, she noticed a pamphlet in which the word ”survivor” was used to describe a person diagnosed with cancer. She would later say that on that single day, she was set “on fire,” feeling empowered by a word that did not connote “victim.”
It was during her second cancer recurrence that Ms. Stovall discovered the National Coalition for Cancer Survivorship (NCCS), and in 1988, she was elected to the Coalition’s Board of Directors. In 1992, NCCS moved its headquarters to Washington, DC, and it was that same year that Ms. Stovall became its President and CEO, positions she held until 2008. From there, she served NCCS as its senior health policy advisor.
Ms. Stovall was more than an ebullient cheerleader; she was an astute expert on health care. For example, during the heated conversations about overtreatment and value, she told The ASCO Post, “At NCCS, our main focus is on cancer care planning, both in the delivery of care and on payment reforms. We look at this in four buckets: the patient, reimbursement, providers, and our central goal, which is cancer care planning at diagnosis and major transition points during treatment and survivorship.”
She added, “Physicians need to be honest and have a frank conversation with their patients, starting with explaining whether their cancer is curable or incurable, and what the available options are. This lays the groundwork for a shared decision-making conversation that addresses the patient’s needs and values moving forward.”
Ms. Stovall was also a founding member of the Institute of Medicine’s National Cancer Policy Board and its successor, the National Cancer Policy Forum. Prior to the establishment of the Forum, she was Vice-Chair of the National Cancer Policy Board and co-chaired its Committee on Cancer Survivorship. In that capacity, she co-edited the Institute of Medicine’s report “From Cancer Patient to Cancer Survivor: Lost in Transition,” which addressed the issues adult cancer survivors face.
Her relentless and impassioned advocacy reached from small cancer support groups to Capitol Hill. She served on several advisory panels, working groups, and committees of the National Cancer Institute (NCI), American Association for Cancer Research, and ASCO. Ms. Stovall also served a 6-year term on the NCI’s National Cancer Advisory Board, an appointment she received in 1992 from President Bill Clinton.
A person’s life and accomplishments are also measured by human associations and how those associations help the greater good. Noted cancer advocate Carolyn “Bo” Aldigé, President and founder of the Prevent Cancer Foundation, reflected on Ms. Stovall: “I wish I had the words to capture what my heart is feeling over the loss of Ellen. I always felt a special bond with her, even though our respective organizations’ missions were at opposite ends of the spectrum. She always respected everyone’s ideas and opinions, whether she shared them or not, and she was indeed the ultimate collaborator. I have so many happy memories of times working together on both policy and projects—the Clinical Trials Summit, the Tour of Hope, Breakaway From Cancer. Rest in peace, dear Ellen; you are and will be forever missed.”
Former ABC News anchor and melanoma survivor, Sam Donaldson, paid tribute to Ms. Stovall: “When I was diagnosed with melanoma in 1995, one of the first calls I received was from Ellen. I’d never met her, but she warmly offered her help and told me about her group. It was uplifting for me, and I truly appreciated it. I got to know Ellen and saw the dynamic things she did for people with cancer. I also knew her through some of her own battles with cancer, and the fact that she lived as long as she did is a testament to her tenacity and bravery. The whole cancer community is better for having had Ellen administer to us all these years. I’m just terribly sorry we lost her.”
These heartfelt tributes are but a small fraction of the outpouring of sadness at Ms. Stovall’s passing. But more important, each one shares a common thread—the unbreakable spirit of Ms. Stovall’s energy connects them. And her own words, simple and straightforward, say it best: “I live my life and take pleasure in the littlest things. Cancer has taught me humility, and if there’s anything I’ve learned, it’s about not sweating the small stuff.”
Ms. Stovall’s lasting message, which was the heart of her life’s work, is critical for cancer patients and their loved ones: All of us, the well included, only have the moment of time that we are living in. Strive to overcome the challenges of living with cancer, and make the most of it. She always did. ■