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Eric Rosenthal reports

Ellen Stovall on the Lost Opportunities of 1998's ‘The March’

ROSENTHAL, ERIC T.

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This month marks the 10th anniversary of “The MARCH…Coming Together to Conquer Cancer,” the rally on Washington, DC's National Mall by an estimated 250,000 people as well as several hundred thousand more participating locally throughout the United States to spread the common message of “No More Cancer.”

Several days after the September 26, 1998 event, Congress voted to increase the National Institutes of Health's budget by 16%—the beginning of the five-year doubling of the budget that in subsequent years has remained flat and under-funded by comparison.

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Five years ago on the fifth anniversary of The March, I spoke with Ellen Stovall, who had been President and CEO of The March and President and CEO of the National Coalition for Cancer Survivorship, about the “bittersweet legacy” of the event (OT, 9/25/03 issue). And now as the 10th anniversary approached, we took the opportunity to ask her to reflect again on the event with the even longer perspective.

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Ironically, when we spoke it was the first day in more than 15 years that she was no longer heading the NCCS, the nation's oldest survivor-led cancer advocacy organization, having stepped down to become its Senior Health Policy Advisor, working with her successor, Cathy Bonner (OT, 8/25/08).

And this time, Ms. Stovall, who is a member of OT's Editorial Board, spoke about what she considered the “lost opportunity” of The March.

In the 2003 article she had said that she had hoped that in addition to focusing national attention on the need for both quality cancer care for all Americans and a well-financed cancer research program, that the event would allow the cancer community to work together on issues that transcend specific cancer types and provide greater understanding to the public about how the science would eventually benefit them as medical consumers.

“And that was both a very naïve and idealized version of what happened,” she said. “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.”

The original idea for the event came from the NCCS's founding concept of using grassroots peer support to inform and empower the cancer community. She said she'd envisioned a grassroots effort that was similar to those from the civil rights, pro-choice, and human-rights movements, and hoped the effort would stimulate the involvement of cancer advocacy groups' public advocacy.

She also hoped the event 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.”

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Deciding about Terms of Use of Database Caused Problems

“We took great pains to build a database to collect names and addresses—not for raising money for any organization, but purely for sharing that database with all the groups so we could build more of an advocacy network so we wouldn't have to have another March,” she said.

“The whole idea was that the database had some value. But there was a lot of acrimony and concerns [from some other cancer organizations], and agreeing to the terms of its use was not possible, and that to me was a shock.

“I just thought what a wasted opportunity. The March didn't have to be a onetime event. The attempt was to make it evergreen by getting everyone into that database. If we could have had a quarter million—let alone a million people—in a database that we could use to call members of Congress when something important was happening in cancer policy, then that was the coalition we wanted to build. It would be a virtual one, and we weren't looking to raise money off it, but use it to build a coalition. That's why NCCS was involved in the first place. It was really a lost opportunity in that respect.”

In 1998 the Internet was still evolving, and some of The March organizers realized its potential for future mobilization efforts, as well as for social networking and exchanging information among nonprofits.

“But we have no idea what happened to this database, and no one wants to talk about it. It existed, and we were told it was not usable, that it was corrupted. We were not privy to a lot of discussions behind the scenes. There were a lot of things that were not transparent.”

Interestingly, within days of the end of the event, the National Dialogue on Cancer [now C-Change] was formed, and NCCS was not invited to participate at that time.

Although Ms. Stovall was CEO of The March, which was founded as a corporation under the NCCS's 501(c)3 status, she said all funds flowed through the corporation and its officers, headed by the Chief Operating Officer and Chairman of its Board, Richard N. Atkins, MD, who until recently was the CEO of the National Prostate Cancer Coalition. (I attempted to contact Dr. Atkins about his remembrances of The March and the fate of the missing database, but as of the time this article went to press several weeks later he had not responded.)

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‘Fraught with Onco-Politics’

The March was fraught with “onco-politics,” Ms. Stovall said, and seen as a threat by some other members of the cancer community concerned that an amalgamation of the community would diminish everyone's own sovereignty.

She also noted some comparisons and differences between The March and the three TV networks simulcasting of Stand Up To Cancer (SU2C) on September 5 (an article about that will be in the 9/25/08 OT), perhaps two of the largest cancer public outreach efforts spanning that 10-year period.

“The March involved people coming to Washington to get the attention of the government, while events such as Stand Up To Cancer are used to get the attention of the public at large and reach millions of people throughout the world or wherever they can access the networks carrying it,” said Ms. Stovall, who is a member of SU2C's Advocate Advisory Council.

“In this sense they are entirely different, with one being more of a passive viewing experience and an education and public awareness campaign, while the other was really a catalyst to the community to form a coalition that would continue to work together.”

In 1998 there wasn't the awareness of cancer survivorship that exists today, she noted, crediting Lance Armstrong and the yellow wristband campaign with having done more to raise awareness about cancer survivorship than any march on Washington or telethon could do, calling it a phenomenon and great moment in time that post-dated The March.

“So The March was really a very Washington thing and was for people who were activists, but it was also perceived as a threat to those who didn't see themselves as part of a coalition. And I understand that, but it really hurt us as a community. The success of The March was truly political action, and it was a show in a sense that there was no politician who didn't want to be up there on the Mall that day.”

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Took Place During Impeachment Proceedings

She noted that President Clinton was also being impeached at the time and was the leading story in the news, and that the reason Congress was still in session that late in September was because of the impeachment proceedings.

“But we wanted to increase the NIH budget come hell or high water. That was the goal, and I think many people will attribute the fact that that helped in addition to other factors, but I don't think any of us should presume to take credit for anything that happens in Washington, because when something is even a little bit successful everyone likes to take credit for it.

“I take no credit for The March doing anything except attempting to bring a divided community together around something that was important to all of us. And there shouldn't have been any politics involved in that, and once again I was wrong. It's just the way of the world. It's partially my own naivety and idealism, but still I say it was worth doing because it gave us an example of what could be done, and needed to be done, to move the ball forward.”

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‘Make Them Feel the Heat’

She paraphrased ABC's Sam Donaldson, speaking at the event, paraphrasing former Speaker of the House Tip O'Neill about when you want to get Congress to do something, you can't make them see the light, you've got to make them feel the heat.

“I think The March made Congress feel the heat, and they saw we were serious, with a quarter million people on the Mall and others participating nationwide in their communities.

“And I think that the people who are organizing Stand Up To Cancer have the same hope—that cancer will become a public-awareness issue that people will embrace and raise money for.

“It seems to be the first time that anyone is seriously trying to raise some money in the private sector for cancer research, and that's not a bad thing since the days of funding cancer research [largely through government funding] are behind us and we have to do something.”

© 2008 Lippincott Williams & Wilkins, Inc.

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