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ADVOCACY INSIGHT

Five Years After ‘The March’: A Conversation with Ellen Stovall about the Bittersweet Legacy of the Event

Rosenthal, Eric T.

doi: 10.1097/01.COT.0000291624.27873.8e
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Five years ago this month—on September 26, 1998—a quarter of a million people rallied on the National Mall in Washington, DC, and several hundred thousand others gathered in some 200 communities around the country to share a common message: No More Cancer.

The original concept of the event, whose official name was THE MARCH…Coming Together to Conquer Cancer, was the idealized vision of Ellen Stovall, CEO and President of the National Coalition for Cancer Survivorship (NCCS), President of The March, and a member of OT's Editorial Board.

A two-time cancer survivor and long-time leader of cancer patient-advocacy efforts in the United States, Ms. Stovall had a hope of national grassroots solidarity in coming together to conquer cancer. That dream was partially realized for several hours as 250,000 people populated the Mall in brilliant sunshine and scalding 95° temperature for an event that drew serious attention from the media, members of Congress, and the White House.

Ellen Stovall and I have known each other since we both attended the original Friends of Cancer Research meetings in the mid-1990s. I became formally involved with The March when representing the NCI-designated Cancer Centers Public Affairs Network during preliminary meetings designed to inform and include various national cancer constituencies in proposed March activities.

Figure. E
Figure. E:
llen Stovall (shown in two photos taken at The March): “Everyone has a passion to eradicate cancer, but not many people have a passion to assure quality health care for everyone. Those who represent ‘orphan’ or deadly cancers with very few treatments have a difficult time dedicating themselves to these broader issues, and those of us who represent all cancers have a real challenge in communicating messages to get people to rally around these larger issues. One thing that deserves more of our attention is the way we finance and deliver health care, and we need to bring rationality and accountability into our funding of research. The cure we seek is not just for cancer itself, but for the health care system that finances and delivers that care, so that whatever we accomplish scientifically or medically will also be available to those who need it.”

By the time of the actual event—officially commencing at 8 pm on Friday, September 25th with a candlelight vigil at the Lincoln Memorial—I was covering The March as correspondent for The Group Room cancer-talk radio show.

The day after the rally, on Sunday, Sept. 27, Ms. Stovall and I sat in the studio of The Group Room's Washington-area affiliate, the former WWRC-AM, and discussed the national phenomenon with Selma Schimmel, host of the radio show and CEO and Founder of Vital Options International, and the late Ellen Cohen, Founder of the Lymphoma Research Foundation, both of whom had participated in Los Angeles' March observances.

I remember commenting on air that it was great to see such solidarity on the Mall and around the country during the course of one afternoon, but asked, “What would happen tomorrow, Monday? Would the cohesion last, or would things be back to business as usual?”

Now, five years later, I repeated those questions to Ms. Stovall during a telephone interview in which she reflected on the legacy of the historical event.

‘Naïve and Idealized’

“In addition to focusing national attention on the need for quality cancer care for all Americans as well as the need for a well-financed cancer research program, I had also hoped The March would allow the cancer community to work together on issues that transcend specific cancer types and would provide greater understanding to the public about how the science would eventually benefit them as medical consumers,” she said.

“And that was both a very naïve and idealized version of what happened. I would admit in retrospect that I believed in those days it was possible to have people suspend interest in perpetuating their own causes to come together for two discrete messages—quality cancer care and an adequately funded cancer research program—but what happened that day was only a partial realization of what we hoped would occur.”

Ms. Stovall explained that her original idea for The March stemmed from the NCCs' founding concept of grassroots peer support as a means of informing and empowering the cancer community.

“I had envisioned a grassroots effort—similar to those from the civil-rights, pro-choice, or human-rights movements—that would stimulate cancer advocacy groups to get involved in public advocacy through participating in The March and would inspire more people around the country to get more involved in caring about quality cancer care and increased research funding; but circumstances didn't permit us sufficient time to realize that goal fully.”

Figure
Figure:
Scenes from The March, Sept. 1998: The candlelight vigil at the Washington Monument the evening before, early that day on the Washington Mall, the unveiling of The Childhood Cancer Quilt, and some of the speakers — General Norman Schwarzkopf, Jesse Jackson, and Senator Tom Harkin and then-Senator Connie Mack.

“Cancer is not monolithic; it's not like heart disease or diabetes…and we learned from The March that people tend to self-identify according to the type of cancer they have. During the last decade, there has been a proliferation around specific cancer organ sites that has helped keep people's attention focused on their particular type of cancer rather than the larger issues of assuring health care and research funding for everyone.”

Premature Launching

Those circumstances referred to the premature launching of The March concept on CNN's “Larry King Live” show on April 7, 1997.

She had been asked to appear on the broadcast as a last-minute replacement for then-NCI Director Richard Klausner, MD.

In addition to Ms. Stovall, Larry King's other guests in the studio for that program were ABC's Sam Donaldson, a melanoma survivor, and financier Michael Milken, a prostate cancer survivor and founder of CaP CURE; also on the program, speaking from remote locations, were television-journalist Paula Zahn as well as talk-show host Morton Downey Jr. and actor Robert Urich, both of whom have since died of their cancers—lung cancer and synovial cell sarcoma, respectively.

“I had mentioned my idea for a national grassroots march several months earlier to Michael Milken,” Ellen Stovall explained. “When we found out we had the opportunity to discuss cancer issues with Larry King, Michael and I agreed it would be premature to talk about The March and raise people's expectations.

“The NCCS board and I had agreed I would discuss quality cancer care that night, especially since the NCCS had revised and narrowed its mission in 1996 to focus on assuring quality cancer care for all Americans, and this was a great opportunity to build on that by reaching out to the people who were most unlikely to receive quality care.”

But the discussion took on a life of its own, and one thing led to another.

“I had just explained NCCs' definition of a cancer survivor as anyone with a diagnosis of cancer, whether newly diagnosed or in remission or with recurrence or terminal cancer, and noted there were then more than 8 million survivors in the US, which led Sam to say that that many people should be marching in the streets. Well, that prompted Michael to quip, ‘You'd need to ask Ellen about marching in the streets,’ which caught Larry's attention and caused him to ask ‘What's this about a march?’—which essentially proclaimed a national march on cancer.”

Donna Doneski, NCCS Director of Communications, likened Ms. Stovall's on-air reaction to that of a “deer caught in the headlights,” and Ms. Stovall admits to feeling like she was about to pass out, since she had promised her board nothing would be mentioned about a march.

Galvanized Public Reaction

However, public reaction to the impromptu suggestion of a march helped perpetuate the event.

“We were told that ‘Larry King Live’ got more phone calls that night than any other issue they had since Ross Perot had announced his running for the presidency,” she recalled.

“The show generated tremendous interest, and with the responsibility of producing a March thrust on NCCS, I told Larry, Michael, and Sam that they had no idea what type of reaction we're going to get…we've given the public something to think about and do and we now have a responsibility. If this was going to happen, then we'd better meet first thing in the morning.”

Figure
Figure

The next morning, Sam Donaldson, Michael Milken, Friends of Cancer Research President Ellen Sigal, and Ms. Stovall met in a Washington hotel room to work on developing a feasible outreach strategy.

“Michael's assignment was to contact Peter Ueberroth [who was responsible for the success of the Los Angeles Olympics] about organizing the event; Ellen [Sigal] was to assess the research community's interest in the event, and Sam was to talk with his friends on the Hill regarding the best time for scheduling The March,” Ms. Stovall said.

After a number of earlier dates were suggested, the group decided on September 1998, which was officially announced on a subsequent Larry King show in October 1997 that also included guests General H. Norman Schwarzkopf (a prostate cancer survivor who would be named Honorary Chairman of The March) and supermodel Cindy Crawford, whose younger brother had died of leukemia when she was 10 years old.

With less than a year to plan The March, the NCCS initially enlisted the help of the Intercultural Cancer Council (ICC) and the Friends of Cancer Research.

Wanted to Reach Beyond the Cancer Community

“We wanted to reach out beyond the cancer community,” Ms. Stovall said. “We wanted the ICC to help us take the message of quality cancer care to minority and underserved communities and have Friends of Cancer Research work on developing the research component. We wanted to give visibility and voice to all the constituencies represented by these organizations and the NCCS.

“Originally, we didn't view this as a Washington event, but rather as an opportunity for outreach with grassroots events throughout the country held concurrently with maybe a small rally or vigil on the National Mall.”

But lack of time, resources, and a sustainable infrastructure for the event—plus the crush of multiple voices of cancer communicating in typical Tower-of-Babel-like fashion—didn't permit the NCCS to realize its goal of mobilizing an extensive and sustainable grassroots effort, but instead caused the project to be focused on Washington.

“My naïvet© mentioned before came from my thinking that The March could do for cancer what women were able to do for breast cancer,” Ms. Stovall said. “I had hoped The March would begin a process among groups in the cancer community that would sustain national attention on the issues of quality cancer care and increased funding for research.

“However, I came to realize that whereas many of the grassroots patient organizations were willing to become part of the effort, some of the more-established cancer organizations were understandably reluctant to get involved in a larger coalition effort that might compromise their respective identities and autonomies.

“Cancer is not monolithic; it's not like heart disease or diabetes,” she continued. “Cancer is hundreds of diseases, and we learned from The March that people tend to self-identify according to the type of cancer they have. During the last decade, there has been an explosion and proliferation around specific cancer organ sites that has helped keep people's attention focused on their particular type of cancer rather than the larger issues of assuring health care and research funding for everyone.

“These larger issues don't mean as much to individuals as information about their own cancers,” she said. “The real devil and the most vexing and menacing problem to getting the outcome of quality and accessible cancer care is dealing with a very complicated set of issues including our health care system.

“Very few cancer advocates are willing to take on the health care system. They want to eradicate cancer…it sells better…it's something people can understand.”

“Everyone has a passion to eradicate cancer,” she continued, “but not many people have a passion to assure quality health care for everyone. Those who represent ‘orphan’ or deadly cancers with very few treatments have a very difficult time dedicating themselves to these broader issues, and those of us who represent all cancers have a real challenge in communicating messages to get people to rally around these larger issues.

Figure. E
Figure. E:
ric Rosenthal, shown here at The March in 1998, has worked in the world of medical and cancer communications in a variety of capacities—as founder of the NCI-designated Cancer Centers Public Affairs Network, Senior Correspondent and News Features Editor for Vital Options/The Group Room, and organizer of conferences about the media and medical communications issues.

“One thing that deserves more of our attention is the way we finance and deliver health care, and we need to bring rationality and accountability into our funding of research.

“The cure we seek is not just for cancer itself, but for the health care system that finances and delivers that care, so that whatever we accomplish scientifically or medically will also be available to those who need it.”

‘No Regret’

“I never look back to The March with regret,” Ms. Stovall said. “I think it pushed many of us to see what was possible for cancer advocacy. We found out that competitive groups could work together, and if you create a culture of working together and a culture of trust to solve a problem, you can do things better together than by yourself. It's much more satisfying to work with others collegially than to work alone—and this was an important legacy of The March for those willing to learn it.

“People need to do more than march, they need to make commitments in terms of changing public policy and public perspective of this disease…and we need research, since we still don't know everything we need to know about this disease. The March was a one-day public display of making cancer visible to the nation; the real work involves a sustained effort and attention to these issues every day,” Ms. Stovall concluded.

As for the question about whether a post-March world would see cancer community unanimity or fractious back-to-business-as-usual behavior, the results seemed to be mixed.

Several days following The March, Congress voted for a 16% increase in funding for the National Institutes of Health—the largest increase to date, and part of a five-year plan that would eventually double the NIH budget.

And while some parts of the cancer community grew closer together, others seemed to find new ways to enhance the divide.

© 2003 Lippincott Williams & Wilkins, Inc.
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