The following is excerpted from Judith L. Pearson’s new book, From Shadows to Life: A Biography of the Cancer Survivorship Movement, available at Amazon.com.

The March

On February 23, 1997, Ellen Stovall, CEO of the National Coalition for Cancer Survivorship (NCCS), sent an email to Betsy Clark, Oncology Social Worker and president of the NCCS board of Directors. “I’ve been taking the pulse of a few key people in the cancer community,” Ellen wrote, “and trying to figure out the best way to reach people to disseminate our materials AND raise consciousness of the public at large about survivorship and NCCS. I believe I have found the answer to the latter and it’s a biggie! We need to talk.”

Ellen’s idea was a march on Washington, with General Norman Schwarzkopf in fatigues leading an army of survivors, advocates, members of the oncology community, and more. Together, they would wage a new war on cancer. NCCS would also bring other advocacy organizations whose stakeholders would participate. The country and the world would see a sea of humanity, all connected to cancer survivors. And their collective voice would ring loud in the ears of Congress, the men and women responsible for doling out cancer research funding. After all, Ellen told Betsy, if Louis Farrakhan could get a Million Man March, what’s the big deal?

Others around the country were also acutely aware of the way Nixon’s war—and attention to cancer—had stagnated. Unbeknownst to Ellen or Betsy, those folks were percolating on some kind of a big splash as well. One of them was prostate cancer survivor Michael Milken, the financier who had founded CaP CURE, the Association for the Cure of Cancer of the Prostate, a disease he had survived. Two years earlier, he had participated in the NCCS Congress. Ellen saw him on April 6, 1997, and mentioned the march idea to him. She and Betsy had taken the idea to the NCCS board, too, and they all agreed to work on feasibility details behind the scenes, but not to make any announcement till their proverbial ducks were lined up. And then fate intervened.

On April 7, 1997, Dr. Klausner was unable to take part in a cancer panel to air on Larry King Live. Ellen was asked to step in, with the rest of the panel being made up of actor Robert Urich (a synovial sarcoma survivor who connected remotely from Los Angeles), ABC news anchor Sam Donaldson (a melanoma survivor), talk-show host Morton Downey Jr. (a lung cancer survivor), television journalist Paula Zahn (who’d had four family members diagnosed with cancer a decade earlier) and Milken.

The program began innocently, with Ellen, Milken, and Donaldson lamenting the meager cancer research dollars and the fragmentation of its organizations. During the commercial, Donaldson declared, “We need a march!”

“Ellen’s in charge of marches,” Milken said, in an offhanded way. The concept spread like wildfire around the studio and by the time they were back on the air, King proclaimed in his booming voice, “We have an announcement!”

Ellen was a deer caught in headlights. This was just, as yet, an idea. No strategic planning had been done. She certainly didn’t want to ignite the vulnerable survivorship population for something that NCCS couldn’t deliver. She had promised her board she would keep the idea under wraps. Now it had been broadcast to King’s million-strong audience. She was horrified. And she was angry, after the show telling King, Milken, and Donaldson—in no uncertain terms—that they had no idea what they had just done.

While they were all still in the same city, Ellen, Milken, and Donaldson met at the Madison Hotel to hammer out the dozens of questions. How much could a march cost? (The answer, they would learn, was millions.) Who could find a campaign and logistics wizard? Who could drum up political assistance, celebrities, and scientists? And what about the cancer community? Each of the brainstorming-session participants stepped into the arena that best suited them, with Ellen taking on the cancer community component. Suddenly “a march” became The March (always presented with a “T” capitalized). And as had been the case throughout NCCS history, dominoes seemed to just fall into place.

The vision was reminiscent of the 1990 Earth Day Celebration. The March would occur in Washington, with smaller marches occurring simultaneously all across the country. Milken consulted his Rolodex for organizers and funders. He was able to contact the very fellow who had organized the original Earth Day Celebration, Walter McGuire. McGuire had an event proposal in their hands a few days later. And shortly after that, at the AACR annual meeting, the two Ellens (Stovall and Sigal) fortuitously met Richard Butera, the president of the Sidney Kimmel Foundation for Cancer Research. Kimmel was Butera’s best friend, the CEO of Jones Apparel, and very rich. The two men had also recently put their heads together to find a way to wake up voters about cancer research funding. The March was exactly the kind of thing they were considering.

As soon as he heard about it, Kimmel was so inspired, he immediately wrote a personal check in the sum of $500,000. He apologized it wasn’t for the entire $1.5 million he had pledged, but $500,000, he said, was the max his bank allowed per check. In addition to making good on the other $1 million, he pulled in more donors to cover the cost of a massive ad campaign.

For complete transparency on all levels, the NCCS board and staff recognized immediately that they needed to separate themselves from The March. Ellen became the event’s president. Betsy left her position as social worker for a year and stepped down from the NCCS board presidency to become the full-time chief operating officer of NCCS. Susie stepped back in as president of the board. The March had its own board, stacked with high visibility people. And as technology was taking an ever more important place in society, The March had a dedicated website, too. They opened an office in Washington, DC, on K and 17th Streets Northwest in an old campaign office space. The March staff set up folding tables throughout from which to work, and it was conveniently located right around the corner from the Firehook Bakery. The takeout meals flowed from breakfast through dinner, with lots and lots of coffee as the day of The March drew closer.

NCCS staff members were pulled over to work on the event, including Donna Doneski. In early spring 1996, she had grown weary of her job working for a software firm. She had mentioned it to her friend and hairstylist, Diane, some time ago, and Diane now called to ask Donna if she was serious about changing jobs. Donna said she was. “Then I’ve got something for you,” Diane told her. Ellen Stovall, also Diane’s client, was overwhelmed by her work at NCCS and looking for an executive assistant. Donna called Ellen on a Friday morning and Ellen asked her to come in that afternoon. The two hit it off just as Diane thought they would, and Donna started the job two weeks later, becoming Ellen’s right-hand girl.

Although Donna’s title was Director of Community Operations, she became a “Jane” of all trades at NCCS. She was in the green room the day The March bombshell dropped, and at the Madison Hotel meeting the next day. Going forward, she kept a running list of any celebrity who ever mentioned cancer, to pull them in. And she connected with others who had done big events to learn from them.

The official launch of The March came on a return visit to Larry King Live six months after the bombshell announcement. This time, October 23, 1997, Ellen, Milken, and Donaldson were joined by supermodel Cindy Crawford, whose younger brother had died of leukemia when they were children; tennis star and children’s cancer advocate Andrea Jaeger; and figure skating champion Scott Hamilton, who had completed treatment for testicular cancer six months earlier. Following a year-long marketing and P.R. campaign, The March—subtitled “Coming Together to Conquer Cancer”—would be the culmination. It would take place on Saturday, September 26, 1998.

Donaldson closed the first segment of the show with a quote from Ronald Reagan: “When you can’t make them see the light, make them feel the heat.” When they came back from the commercials, King announced that they had a “very special caller,” General Norman Schwarzkopf. Asked if he was going to march, Schwarzkopf said yes, and challenged all Americans to be there with them. He had already signed on as co-chair, along with Sidney Kimmel. Still on the air, Ellen asked the general if he could have taken back the Persian Gulf with a $2 billion defense expenditure, NCI’s purse for the war on cancer.

“No,” the general answered emphatically. “With $2 billion, that wouldn’t have been a war, that would have been a minor skirmish!”

A “skirmish” was not acceptable to those within NCCS. Things had to change. The March team started by bringing in powerful troops, including the same press secretary who had handled the communications for a National Organization for Women (NOW) March. The DC event had attracted 400,000 people. Ellen’s brother was well-placed in media; he was tapped to help with national exposure. Plus, Ellen’s good friend, P.R. expert Rosemary Wussler, immediately stepped up to volunteer. Her father, Robert Wussler, was President and CEO of Affiliate Enterprises, a company owned by ABC Television Associates, thus beefing up their television exposure.

The preparation was enormous. The responsibility was enormous. But the results would be enormous, and lifesaving. As Ellen explained in a Dallas interview, “We’re spending a few million dollars to increase the cancer research budget by billions of dollars.”

Between the Larry King Live appearance, the advertising campaign that began the next day, and contacting nine hundred organizations across the country—every one they could find with the word “cancer” in its name—it was the right combination to amp up the excitement. They attracted big names in oncology as well, including Dr. Donald Coffey. By his own admission, Dr. Coffey had been transformed from a quiet scientist and researcher at the Johns Hopkins Oncology Center to a loudmouthed advocate when he became president of AACR. He discovered that out of every hundred research grants then approved by the NCI—the proposals that had met the rigorous standards of scientific “peer review”—only about twenty-three could actually be funded.

“That’s bad,” Coffey said, “because we don’t have all the answers yet. We don’t know where the next breakthrough is coming, and we are discouraging a whole new generation of scientists from ever trying for one.

“People are angry and frustrated,” he continued, “they believe that there has been a war, and it has failed. This hasn’t been a war on cancer. This has been a skirmish.” Exactly General Schwarzkopf’s impression of the paltry cancer research budget.

Coffey believed so much in what NCCS was forging, he became the lead scientist supporting The March. He invited his fellow oncology professionals to join him. And they did. When March day finally arrived, Dr. Coffey and about 250 of his peers crammed into five buses at the Johns Hopkins Medical School campus to make the trip to Washington.

It wasn’t all smooth sailing, however. While the decision to become involved was a no-brainer for the AACR, along with the Oncology Nursing Society and the ASCO, other groups were not as anxious to jump on board. This was not a new challenge for NCCS, but rather a frustrating one they had dealt with since their inception. Regardless of cancer type, survivorship posed similar challenges across the board. Other organizations’ success in garnering more influence and more money would produce more long-term survivors. They, in turn, would need support in their survivorship, which was where NCCS would step in. But some in the cancer world, where there was fierce competition for influence and dollars, didn’t always see NCCS as complementary to their work.

For some organ-specific cancer groups, helping to gin up March donations would compete with their own fundraising efforts. In addition, they didn’t relish having another entity, in this case The March, take even a sliver of their autonomy. They didn’t want their messages to be watered down with someone else’s agenda.

“It’s like nailing Jell-O to the wall,” Ellen said, regarding their efforts to bring the other organizations to The March table. “It’s time this community came together.”

The San Francisco Examiner observed: “Cancer advocacy is nothing new. What’s different is the attempt by The March organizers to marshal the country’s eight million cancer survivors into one supergroup.”

There were also naysayers who felt that NCCS was too young, too small, and too poor to pull off such a massive event. Fortunately, the results of an early planning meeting with the National Park Service never became public. The Park Service representative told Betsy Clark and Rosemary Wussler they needed to reserve jumbotrons immediately. After all, she told them, there were only eight in the entire nation (at the time). Betsy later admitted to Rosemary and Ellen she didn’t even know what a jumbotron was, let alone why they needed some.

But naïveté is often the seed that sprouts greatness. The ship had sailed, and March Madness had begun.

***

“My name is Ellen Stovall and I am one of this country’s more than eight million cancer survivors,” Ellen’s June 1998 article in The Oncologist began. It was part memoir, part economics class, and part recruitment poster for The March.

Why come to Washington, DC? Because this is America. Because historically when Americans have had enough—enough segregation, enough oppression, enough injustice—they’ve come to Washington, DC. They come to testify, to bear witness, to stand vigil, to protest, to raise their voices, to let their lawmakers know what is unacceptable to them and to say, ‘NO MORE.’

…Science continues to make great progress against the more than 100 diseases we call cancer. In 1998, we are turning hope into action. We need you to stand with us and say, ‘NO MORE. No more waiting, no more patience, no more silence, no more cancer.’ THE MARCH…Coming Together to Conquer Cancer. Join us.

As the weeks slid closer to the big day, Terry Campbell, now the Networker editor, made one last request of the pre-March newsletter readers.

If you have a job to do, the key to getting it done is to show up. Show up, and you have a chance to accomplish your goal. If you don’t show up, your odds of success hover around zero.

On September 26, we have a job to do…The job is The March: Coming Together to Conquer Cancer…Here’s the deal: cancer kills. Those it does not kill, it generally beats up pretty badly. And who cares? The people with the bruises. And those people—meaning us—are the people who must take action to spare those we love, and generations to come, from the ravages of cancer.

…One way or the other, we’ve got to show up. It’s up to us. We have to show Congress, and the nation, that we mean business. Let’s do this thing!

That same newsletter outlined in full the elements of The March weekend. Events would begin on Thursday, September 24, and run through Saturday. It also had a map to familiarize readers with the National Mall, the center of it all. It was almost showtime for the biggest gamble the NCCS ever made.

On Friday morning, Susie, Ellen, Betsy, and the rest of the NCCS board and staff had long to-do lists. The final March set-up was going on at the National Mall just a mile away from the J.W. Marriott on Pennsylvania Avenue where they were all staying. The main stage had been positioned along Third Street, practically at Congress’s doorstep. That was, after all, the whole purpose: to create an event so large, the men and women inside couldn’t ignore it.

Heading east from Third Street, toward the Washington Monument, the Mall would overflow with displays, learning and networking opportunities, and activities. Sponsors and advocates had reserved their spots from which to hand out information. A special tent called “Meet the Experts” would give attendees a chance to chat with oncology professionals from all disciplines. At the Wall of Courage, attendees could leave a message in honor or memory of someone loved. Its fifty-three panels represented each American state and territory. A Children’s Patchwork Playground would not only provide entertainment for younger attendees—both survivors and supporters—but it would also be the location for the debut of the National Childhood Cancer Awareness Quilt. Stretching the length of a football field, each of its almost 4,000 handmade squares had been created in memory of a child who had died of cancer. The Ribbon of Hope was on display, too, not far off the Mall at the National Postal Museum. Its golden resplendence was now over 5,000 feet long, with more than 150,000 signatures.

NCCS would have a cancer education tent as well, where attendees would receive free copies of the newly minted “Cancer Information Guide.” Computer stations would allow visitors to navigate the new website, “CanSearch.” The NCCS boutique would be open, too, selling tee shirts, posters, buttons, note cards and beautiful scarves. The gauzy confections were designed by artist Margaret Roberts, whose two sisters died of cancer, and who had been recognized as an “Everyday Hero” the evening before.

The March activities would stretch for nearly half a mile. Dotted throughout were concession stands, first aid stations, courtesy stations (dispensing free water and sunscreen), and lost person booths. It would be part state fair, part memorial garden, part political rally. The enormity of it was meant to deliver a single, strong message to Congress and the Clinton administration: “You must do whatever it takes to end this devastating disease. We are watching, and we will hold you accountable.”

The Washington weather had been perfect for the Ribbon of Hope dinner and the candlelight vigil, with clear skies and highs in the upper 60s. But on March day itself, Mother Nature had a different idea. When the NCCS crew arrived on the National Mall just after dawn, dressed in March branded tee shirts, the temperature was already 66 degrees with 90 percent humidity. It would rise to a steamy 86 by afternoon, making it 105 on the heat index.

As the morning wore on, couples, families, individuals, and small groups began arriving. They were, in turn, joined by busloads. Some attendees carried photos of parents who had died of cancer. Others had photos of their children. They were a diverse array of regular people representing cancer’s deadly swath through every racial, socioeconomic, and generational subset.

The throngs walking the National Mall that bright September day came from across the country. But Dani Grady should have won the prize for the greatest physical effort to get there. A survivor of advanced-stage breast cancer, she had left San Diego on July 20, making a 3,600-mile, ten-week, “Conquer Cancer Coast to Coast” national bike tour. Michigander Brad Zebrack (no stranger to survivorship, NCCS, and awareness bike tours, having done his own with his wife a decade earlier) joined her as she rolled through Detroit. And when Dani arrived at The March that Saturday, it was to a hero’s welcome on stage, lifting her bike high over her head. When she and Brad took their seats on the stage, Brad realized he was not only sitting next to one of the main entertainers of the day, but his musical hero as well: Graham Nash of Crosby, Stills, and Nash. He felt like a starstruck teenager.

From Des Moines, Iowa, to Tampa, Florida, and from Trenton, New Jersey, to Sacramento, California, concurrent rallies were occurring all across the country. As on the National Mall, crowds of survivors, caregivers, advocates, and health care professionals used September 26 as a rallying point to send a message of hope and determination. Given the estimated annual cost of cancer—$92 billion in medical and supportive care and $12 billion in lost productivity—the needs on both a state and national level were clear. And they echoed the published mission of The March on Washington: “More federal funding for ALL cancer research; increased access to quality cancer care for ALL people; a renewed commitment from ALL of our elected officials to conquer cancer.” The day so inspired the nation that even college football got involved. At the annual rivalry between Michigan and Michigan State that year in Ann Arbor, the half-time show included a special March tribute.

In Washington, DC, as the temperature climbed, so did the attendance, until it reached an estimated 200,000 people. Around noon, Ellen stepped up to the podium, centered on the enormous stage, to begin the program. “…Look around you,” she said. “Embrace the sorrow cancer has created. Feel the strength and the determination and the hope and courage of the survivors and their families. We are the faces of cancer. We are real. And we are not going away.

“Today we defy the politics that deliberately divide us; the politics that dare to put a price tag on cancer; on the millions of lives touched by this horrid disease. Today we say no…more…cancer!”

Ellen was followed by sports heroes, politicians, well-known clergy, celebrities, and journalists. The Queen of Soul, Aretha Franklin, lent her powerful voice. Joining her were a general, Schwarzkopf; another queen, Noor (of Jordan); and the Vice President, Al Gore.

When the quiet man in a suit and tie—his attire more noticeable because of the heat—took the stage, the crowd hushed. Unbeknownst to them, if it hadn’t been for the influx of cash from that man, March co-chair Sidney Kimmel, the day might never have taken place.

Modest and humble, he told the audience, “This March is both a historic moment in our nation and a turning point in our battle against cancer. It must represent the final chapter in the war against cancer. We’re here in Washington to tell our government in one very loud, very strong voice that America will no longer tolerate anything but the strongest commitment to make cancer our top health care priority.”

And then, pointing his finger over his shoulder at the Capitol, “Good God! What the hell are you waiting for?” The crowd roared in agreement.

It is often said that the first and last things people hear in a speech or at an event are the things best remembered. The historic march, Coming Together to Conquer Cancer, concluded with words and music from cancer survivor David Crosby and his longtime musical partner Graham Nash, as they performed their familiar “Teach Your Children.”  Released nearly thirty years earlier, the song’s original focus was on the generation gap. But the words have taken on even greater meaning with the passage of time.

 

 

Judy Pearson is a graduate of Michigan State University and a best-selling author, with four books and millions of published words to her credit. An accomplished presenter and speaker, Judy is the founder of A 2nd Act, has been featured in the AACR National Cancer Research Progress Report, was named one of Chicago’s Most Inspirational Women, a finalist for the Arizona Healthcare Leadership Awards and named a Phoenix Healthcare Hero. Judy and her husband live in Phoenix, AZ.