42-01 Ellen Stovall, Pioneering Advocate for Survivorship, Dies at 69

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From a 2008 video produced by NCCS titled “Ellen Stovall: One Person Can Make a Difference,” available below.

Ellen Stovall, Pioneering Advocate for Survivorship, Dies at 69

By Paul Goldberg

Ellen Stovall, one of the most respected and knowledgeable cancer advocates in Washington, died Jan. 5.

The cause of death was a heart attack.

Stovall, 69, was first diagnosed with Hodgkin’s lymphoma in 1971. Her disease recurred in 1983. In 2007, she had bilateral mastectomies due to the late effects of the radiation treatment. Her heart disease and chronic pain were also attributed to her original treatment.

“Ellen is a rare transformational figure in cancer care, who saw an enormous unfilled need and led the development of the entire concept of cancer survivorship,” said Norman Coleman, head of the Experimental Therapeutics Section and associate director of the NCI Division of Cancer Treatment and Diagnosis, and senior medical advisor at the HHS Office of the Assistant Secretary for Preparedness and Response.

“She recognized her good fortune to have been diagnosed with Hodgkin’s disease early in the curative era, built on accomplishments from the brilliance of Henry Kaplan, Saul Rosenberg, Vince DeVita and the NCI team, Gianni Bonadonna and others. Despite all the difficulties that resulted from her treatment, she was always grateful for being alive.”

Stovall’s advocacy was focused primarily on survivorship issues, but her expertise encompassed the entire landscape of cancer: basic science, translational research, trial design, drug approval criteria, drug pricing, and payment policy.

She worked at the National Coalition for Cancer Survivorship since 1992. When she was in her thirties and forties, she told friends that because of the delayed effects of her treatment, she didn’t expect to live deep into her fifties.

I don’t want to write about Ellen’s numerous awards, where she went to school, what committees she sat on. I want to write about Ellen. Because no matter what table she sat at or degree she held or plaque she was given, she wanted to cut through all the BS and do two things: help people and get the right things done,” Fran Visco, president of the National Breast Cancer Coalition, said in an email.

There was no way to distinguish Ellen-the-friend from Ellen-the-insider. Whether you were an advocate, reporter, an NCI director or an FDA commissioner, Stovall was someone you called when you wanted to find out what’s really going on and what to do about it.

Stovall’s ability to stay on top of science and policy was remarkable, but there was more to her.

Like the arrow of a compass, her opinion pointed to the highest moral mark. If you were misreading the situation or were full of crap, she could be counted on to tell you. Her unbreakable loyalty to friends, her sense of humor, and her willingness to stay on the phone and take an already meandering conversation for that extra loop were an added bonus. And another thing: in a city that blabs, Stovall didn’t.

“I first met Ellen shortly after the National Breast Cancer Coalition was formed,” said Visco. “Pam Onder, on behalf of NCCS and with Ellen’s blessing, was part of the launch of NBCC and a member of our first board. Pam was amazing. And then I was introduced to Ellen.

“I don’t think I have ever known anyone like her. She and I bonded immediately, probably in large part due to our concern about advocacy becoming co-opted by every other stakeholder, a topic we discussed many times over the years. And then there was our uncanny ability to roll our eyes at the same thing at the same time. There are many, many egos in cancer advocacy. Ellen’s wasn’t one of them. I saw her time and time again step aside and let someone else take the mike.

“When a controversial, difficult issue arose in the cancer community, which happened pretty much every day, she would bring all sides together to discuss it. She truly believed that somehow everyone would ultimately work for the better good. She had real integrity. Ellen had this amazing ability to challenge everyone and still maintain their utmost respect and love.

“I am not sure Ellen would like that last part. I think she really wanted to be feared more than loved. But she got a lot more done for all of us through her approach. And she did instill fear in all of us the fear of disappointing her. She was so very smart. And funny. And courageous. I was incredibly honored when she asked me to present the award when she was feted by NCCS on her ‘retirement.’ (Which I don’t think ever really happened, thankfully.)

“Her board leadership at the time was a bit concerned and asked to see my remarks ahead of time. I intended to talk about how Ellen was smart and strong and had one of the qualities I treasure the most: she could be a strategic bitch and loveable at the same time.

“They asked me to remove the last part. I did. When I told Ellen, she laughed, and when she thanked me on stage for my remarks, in front of the hundreds of people gathered to honor her, luminaries in the cancer world, she spoke about how she valued the fact that we were two cancer bitches.

“Ellen Stovall, advocate extraordinaire. Cojones magnifico!”

A Truth Teller

Stovall was the NCCS president and CEO, but in recent years she served as the organization’s senior health policy advisor.

“I first met Ellen Stovall when I arrived in Washington in 1999,” said Richard Pazdur, director of the FDA Office of Hematology and Oncology Drug Products. “I was always impressed with the honesty and clarity she brought to any conversation on cancer.

“She was ‘the patient voice’ before we coined the term. Many times we—those in government, academics, industry or patient care—get lost in the daily grind and forget the reason we are all here is the patient. Ellen always brought us back to that patient focus.

“FDA had worked with and NCCS on many projects, including the use of novel endpoints in clinical trials and expanded access. Ellen was there for the larger cancer community issues, but was also present for the individual patient. My late wife, Mary, and Ellen formed an enduring partnership in the last months of their lives since both of them realized a dire prognosis and shared a mutual support and kinship that only those in that situation can understand.”

Stovall’s wisdom was in demand for more than a quarter century.

“Ellen was, above all else, a friend. What was unusual and wonderful about Ellen is that she was an instant friend as well as a deep friend,” said Richard Klausner, a former NCI director who is now the senior vice president and chief opportunity officer of Illumina Corp., and founder and director of Juno Therapeutics.

“She was a truth teller, and there was no editing when Ellen and I talked. I met her soon after I became NCI director, and she was a guide, an advisor and a teacher. She came to every meeting with a spirit of generosity that demanded reciprocation. That’s how the Office of Cancer Survivorship at the NCI was formed and along with it a commitment to survivorship research.

“Her death is a shock, because she was always so alive bringing life and even humor to the most serious issues without ever diminishing their import. She will be missed.”

Harold Varmus sought Stovall’s advice, too.

“For nearly twenty years I have benefited from Ellen Stovall’s wise counsel about many aspects of cancer—from the aspirations of advocates for the advances science promises to the sufferings of patients living with the disease,” former NCI Director Varmus said in an email. “One of Ellen’s remarkable qualities was her temperament: she was able to deliver all kinds of news and convey clear opinions with dignity, clarity, intelligence, and good humor.

“All of us who advocate for medical research and better health care have lost an inspiring leader.”

NCI Acting Director Doug Lowy said that Stovall moved those at the institute to do their best work.

“I speak for many at NCI when I say we will miss Ellen Stovall, ever the stalwart advocate for cancer patients,” Lowy said. “Ellen was a pioneer who shaped the fields of cancer survivorship and cancer policy. She was a longtime friend of the Institute—a friend who pushed us all to do better. We will carry her voice in our heads and our hearts and her commitment to cancer patients will continue.”

Otis Brawley first met Stovall in 1991, soon after he finished his fellowship at NCI and stayed on at the Division of Cancer Prevention and Control.

“Ellen was my dear friend, supporter and mentor for more than 25 years,” said Brawley, chief medical officer of the American Cancer Society. “She had a moral compass and wisdom rarely seen. Her influence on and encouragement of scientists, physicians, corporate executives, politicians, and patients was incredible. She taught us to always remember the human being with cancer.

“It was Ellen who defined the term ‘cancer survivor’ as someone who has been diagnosed. Her actual quote is ‘You are a survivor from the moment you are told you have cancer.’”

Advocate and Insider

Coleman met Stovall while working on Cancer at the Crossroads: A Report to Congress for the Nation(Subcommittee to Evaluate the National Cancer Program, 1994), where Stovall represented the newly emerging survivorship community.

“It was this report under the leadership of Paul Calabresi, the inspiration of Harold Freeman, chair of the President’s Cancer Panel, and the extraordinary organizational ability of Cherie Nichols that proposed the strategic sequence of patients, translational research and basic research that raised the value and emphasized the essential links among all aspects of cancer care and research—with patients first,” Coleman said.

“Ellen is an example of the good that comes about, not necessarily from technical experts, academics or politicians, but from people who see a need and who work to fill it for the good of others. Her legacy is assured as the world of cancer care reflects her contributions,” Coleman said.

“She would undoubtedly be embarrassed by the accolades and her focus would be on filling the needs for cancer care and research. She would expect nothing less of us to do our best and expand the effort for quality care, application of advances to all people and accelerating progress through research.”

Stovall helped define the field of survivorship.

“Ellen was truly a legend in cancer advocacy. She and her colleagues and collaborators at NCCS pioneered the concept of survivorship,” said Shelley Fuld Nasso, NCCS CEO. “She touched thousands of lives, personally and through her advocacy. She believed in helping cancer survivors live as well as they can, for as long as they can. And she did exactly that in her own life, even if it was shorter than we would all have hoped. It has been a privilege to work with her for the last several years, and I am honored to carry on her legacy at NCCS.”

Stovall grew up in Honesdale, Pa., a small town near Scranton. Her father, Nathan Lewis, served as a captain in the U.S. Army, where he was involved in hospital administration during World War II. After serving in the Army, Nathan came home to Honesdale, where he and his wife’s brother, Bill Roos, ran Katz Department Store, circa 1871-1984.

Nathan and his wife, Edna, raised Ellen and her younger brother, Steve.

Ellen attended Penn State University, where she studied journalism. There she met John Stovall, a native of Washington, D.C. After college, she married John and they moved to Gaithersburg, Md.

At 24, six weeks after giving birth to their son Jonathan, Ellen was diagnosed with Hodgkins’ lymphoma. She began treatment on the day the National Cancer Act was signed by President Richard Nixon, on Dec. 23, 1971. Following treatment, Ellen started the first cancer peer support group for young adults in Washington, at Georgetown University Hospital.

“Many cancer survivors who experienced the degree of radiation that was a common treatment protocol for Hodgkin’s lymphoma at the time of Ellen’s original diagnosis in 1973, have a high risk for morbidity from an open heart procedure many years after treatment,” shared Nina Wendling, former colleague at NCCS and current chief operating officer with the International Cancer Expert Corps.

Stovall learned about NCCS during a recurrence of her cancer, through a pamphlet in a psychiatrist’s office. In an interview in 2009, at the time she was honored as one of 10 Women to Watch by Jewish Women International, Stovall said that the word “survivor” in the NCCS pamphlet caught her attention. She was empowered by the concept of being a survivor instead of being a “victim,” the term that had been applied to her up to that time.

Stovall was elected to the NCCS board of directors in 1988 and was named the organization’s president and CEO in 1992. She identified passion as her core qualification for the job and admitted that managing an organization was not her strongest skill. In addition to passion, Stovall brought to the job the ability to articulate the challenges and triumphs of cancer survivorship, connect with other cancer survivors, and convene coalitions and organizations. She was also a master at persuading others to dedicate time and resources to the pursuit of solutions for the problems faced by cancer survivors.

In 1993, Stovall encouraged the leaders of a few cancer organizations to collaborate in cancer policy advocacy. The result of that collaboration is the Cancer Leadership Council, a network of approximately 30 organizations cooperating in public policy activities. She also fostered an alliance between NCCS and the American Society of Clinical Oncology that resulted in a 28-organization collaborative focusing on the development, sharing, and implementation of cancer quality measures, tools, and practical programs in cancer practice.

She was a founding member of the Institute of Medicine’s National Cancer Policy Board and its successor, the National Cancer Policy Forum. These organizations brought together government officials, pharmaceutical industry representatives, academics, health professionals, and patient advocates for years of work that defined the health care, personal, and professional issues confronted by cancer survivors; identified the strengths and weaknesses of the cancer care system; and described a system of care for the “whole patient.”

The health care system and policy recommendations in these groundbreaking reports are still considered a map for reform of the cancer care system. Chief among these was the 2006 report, which Stovall co-edited, titled From Cancer Patient to Cancer Survivor: Lost in Transition. This volume chronicled the challenges encountered by cancer survivors and their families after curative treatment ends, and potential pathways to address these. The report has served for the past decade as the definitive roadmap for survivorship research and care.

Under Stovall’s leadership, NCCS in 1998 launched “The March – Coming Together to Conquer Cancer,” a gathering of 250,000 people on the National Mall and a million more in grassroots events nationwide. The march’s agenda focused on increasing federal funding for cancer research and improving cancer care quality, and was credited with influencing a congressional decision to dramatically boost cancer research funding.

In addition to the march, one of Stovall’s most important contributions to cancer survivorship was her articulate and compelling advocacy for more research conducted by NCI on the long-term impact of surviving cancer.

In the wake of the very first National Congress on Survivorship held in Washington in November 1995, Stovall took the Imperatives for Quality Cancer Care document prepared for the congress to then-NCI Director Klausner, who would then establish the Office of Cancer Survivorship at NCI to drive the science needed to understand and meet the unique needs of the growing population of those living with, through and beyond cancer—a number that now encompasses 15.5 million Americans.

During the years of Stovall’s leadership, NCCS distributed more than a half million Cancer Survival Toolboxes, an informational tool to help cancer patients navigate their cancer care, and developed and distributed other educational materials for cancer survivors. The organization also pursued an aggressive public policy and advocacy program that achieved reforms of the Medicare program to enhance cancer care quality, encouraged reorganization of cancer drug review at the FDA, and guaranteed third-party coverage for health care costs for individuals participating in clinical trials.

Stovall represented cancer survivors and articulated patient concerns during a six-year term on the NCI’s National Cancer Advisory Board, a position she was appointed to by President Bill Clinton. She also served as a board member of The Leapfrog Group, a board member of the National Committee on Quality Assurance, and as a member of committees of the Robert Wood Johnson Foundation, which focused on improving health care quality.

In 2013, Stovall participated in a clinical trial to replace a calcified aortic valve via a percutaneous procedure.

“As a strong advocate for clinical research coupled with her desire to have a better quality of life, Ellen had the procedure performed at the Washington Hospital Center,” said Wendling. “It is the kind of technology that Ellen and others like her, who as long-term survivors from radiation therapy, can now benefit.

“She waited for seven years for the procedure to be available and was ever grateful she was able to take advantage of the evolving science.”

Services will be held Sunday, Jan. 10, at 1 p.m. at Congregation Beth Israel in Honesdale, Pa. Interment will be at Beth Israel at Dyberry Cemetery in Honesdale.

The family will be receiving friends Tuesday, Jan. 12, from 4-9 p.m. at home, 11430 Flints Grove Lane, Gaithersburg, Md. NCCS will host a tribute in Washington in the coming weeks. Details will be announced soon.

In lieu of flowers, donations may be made to: Congregation Beth Israel, 615 Court Street, Honesdale, PA 18431, or the National Coalition for Cancer Survivorship, at 1010 Wayne Ave, Suite 315, Silver Spring, MD 20910.


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