Consider a vision:

Cancer survivors, researchers, and clinicians agree to advance a common agenda. That agenda is endorsed by trade unions, industries and advocates for the environment, children and the elderly.

Then, one day in September 1998, hundreds of thousands of marchers come to Washington to demand that the government launch a new War on Cancer. Millions more take part in rallies, sit-ins and teach-ins nationwide.

After the crowds are gone, a grassroots network remains. This network is able to mobilize enough votes–and enough dollars–to swing elections. Within months, politicians declared to be weak on cancer are driven out of Washington, state capitols, and city halls.

“If the average voter understood how much can be done about cancer and how little is being done, a national movement would materialize,” said Ellen Stovall, executive director of the National Coalition for Cancer Survivorship, who has pulled together a loose coalition of advocacy groups and financial supporters for The March…Coming Together to Conquer Cancer. The march is scheduled for next September.

Stovall said that she realizes that it would not take much to snuff out her vision. Disagreements over directions can erupt. Institutional interests can overshadow common goals. Egos can become all consuming, and skepticism (albeit a health reaction) can assure failure.

“The time has come for all professional societies, coalitions, and advocacy groups to join forces to stop this carnage,” said Donald Coffey, president of the American Association for Cancer Research, who represents a new breed of scientist: a bench researcher politicized through contact with patient advocates. “If we miss this opportunity, the American people will lose.”

Whatever the odds of success, retreat is no longer an option. Stovall, along with ABC newscaster Sam Donaldson, financier Michael Milken, and model Cindy Crawford announced the march on Oct. 23 Larry King Live, a CNN talk show. Stovall, Donaldson and Milken are cancer survivors. Crawford’ brother died of childhood leukemia. On Oct. 24, full-page ads in The Wall Street Journal and The New York Times also announced the march. The ads were financed by the Sidney Kimmel Foundation for Cancer Research.

The march will be modeled on the 1990 celebration of Earth Day, an event that involved 200 million people in 140 countries. The similarity is not accidental. The organizer of the cancer march, Walter McGuire, also made the arrangements for Earth Day, the 1984 and 1996 Olympic torch relay, the soccer World Cup 1994 Legacy Tour, and the visit to Los Angeles by Pope John Paul II.

“This has as much or more potential than other things I’ve done,” McGuire said to The Cancer Letter. “Cancer is an issue that affects millions of people. There is so much that needs to be done to lessen the impact of this disease that it’s hard to argue that there isn’t a need for this.

“What the heck’s holding us back, except inertia?”

The Earth Day Model

If the Earth Day model proves transplantable to oncopolitics, by this time next year, US voters will view cancer as one monumental political issue rather than a tangle of disparate problems.

For one thing, the original Earth Day, in 1970, involved 20 million people all over the US. Twenty years later, Earth Day 1990 brought together 50 to 60 million people in the US, said Denis Hayes, the organizer of the first Earth Day and chairman and CEO of the second.

“In New York alone, Earth Day 1990 was bigger than the Million Man March and the Promise Keepers put together,” Hayes said to The Cancer Letter. “In addition, we had something in the order of three-quarters of a million people in Washington, and we had events going on simultaneously in 20,000 other communities around the world.

“This is relatively big stuff,” Hayes said.

Hayes, who is not involved in the cancer march, said the strategies developed during Earth Day 1970 and 1990 would be applicable to focusing attention on the disease.

“Earth Day is not only about numbers of participants,” said Hayes, president of Seattle-based Bullet Foundation. “Earth Day is about messages that can be developed in a variety of different frameworks and communicated in every way possible in America. Ministers deliver these messages from the pulpit. Garden clubs discuss them. Book groups talk about them. Teachers teach them at schools. Commentators write op-eds about them. As a result of having this intense focus on the issue for a period of time, you leave behind some residue.”

Earth Day 1970 sought to take a series of issues, such as the impact of the pesticide DDT, the problems caused by strip-mining, deforestation, and urban pollution, and force them into a single framework.

“We needed to put those things together, operate from a common framework, and try to create a new movement that comprehensively addressed them all.” Hayes said. As a result of uniting these constituencies, Congress got the message. . Subsequent to Earth Day, Congress passed laws that included the creation of the Environmental Protection Agency, the Clean Water Act, the Clean Air Act, the Endangered Species Act, and the legislation that created the Superfund for cleanup of toxic wastes.

Politicians who refused to recognize the message lived to regret it, Hayes said. Seven of the 12 members of Congress who were identified as the Dirty Dozen for their record on the environment lost their seats in the following election. The Dirty Dozen list was compiled by Environmental Action, a group that was formed following Earth Day.

“In 1970, our focus was policy,” Hayes said. “Voters were pointing their fingers at industries for doing bad things, and at the government for being nonchalant, and saying, “You work for us. Start shaping up.”

Twenty years later, the focus of the event changed. “In 1990 we said now it’s time to recognize that personal responsibility plays a part in this,” Hayes said. “There is no law that will stop anyone from buying four quarts of oil, changing oil in his car, and dumping that oil down the storm sewer. You have to empower people not only as political beings, but also as consumers.”

Both of these messages are relevant to cancer, Hayes said. “If you are going to be addressing cancer, obviously you are going to have to address policy,” he said. “What kind of things are being done by industry? What kind of money is spent by the government and for what purposes?

“At the same time, you have to convince the people that cancer is related to life styles and choices that they are making, and that there are things you can do to protect yourself,” Hayes said.

Earth Day 1990 created no political organization, leaving follow-up to existing conservationist and environmental groups.

The cancer march, by contrast, may create a national political structure led by patient organizations, key organizers said.

“I think that if you look back on it a year from now, you’ll see that we have activated a new political constituency, probably the largest one in the country,” said McGuire. “If you activate this large a constituency, you don’t need a very large percentage of it to make cancer a voting issue.

“Voters would say to a candidate: ‘I like you on all these points, but you are against me on cancer, so I can’t be with you,”” McGuire said.

Stovall said she, too, believes that a political organization would be needed to complete the job begun through the march.

“I think an argument can be made for leaving behind a patient-driven organization that would give the newly empowered, informed constituency a forum to act on legislation and financial issues related to cancer,” Stovall said.

The Cancer Platform

The notion that the grassroots need to be brought into cancer politics has been around for decades.

One organization, the National Breast Cancer Coalition, has fought its way onto the political scene and into the mainstream of cancer research. However, NBCC, out of concern over diluting its message, has generally avoided joining broader coalitions. While NBCC collected millions of signatures on its petitions, other patient groups could only dream of marches, drives, and political action.

Stovall, a 25-year survivor of Hodgkins lymphoma, did not amass her clout through signature campaigns. Her group, NCCS, is a coalition of 350 advocacy organizations, institutions, and support groups interested in public policy, employment rights, insurance, and quality of care issues that affect patients.

Stovall sits on the National Cancer Advisory Board and the National Cancer Policy Board of the National Academy of Sciences. She reviews clinical trials for the Southwest Oncology Group, and lobbies Congress.

For years, she has talked about mobilizing a national constituency to support a “bill of rights” for quality care for cancer patients. However, until the summer of 1995, such big, audacious plans were uncommon in cancer politics.

This lull was interrupted when prostate cancer survivor and financier Michael Milken started making frequent appearances in Washington. His goal was to synthesize what he knew about business, what he had learned about science policy, and what he was learning about the politics of cancer.

Milken approached cancer advocacy and cancer policy as though he were considering an investment: an opportunity to make the maximum impact at a minimal investment.
Naturally, the people he invited to brainstorming sessions had ideas and even complete strategies to suggest. One of his gurus was prostate cancer researcher Donald Coffey, a professor at Johns Hopkins University who is famous for fire and brimstone sermons about needless carnage caused by the federal government’s lack of commitment to cancer research.

The war on cancer is a misnomer, Coffey says. The government is financing a minor skirmish. By 1995, many scientists sounded like breast cancer activists. Ultimately, this growing contingent would elect Coffey president of AACR, a post he is using to escalate the skirmish into a war.

Ironically, Coffey’s saber-rattling and Milken’s forays to Washington began at the time when NCI officials deliberately avoided combat imagery in their speeches and Congressional testimony.

Suddenly, wartime horrors returned with a vengeance. Milken was comparing America’s resolve during Operation Desert Storm with the less resolute war against cancer. Coffey talked body bags and compared the body counts.

In November 1995, a summit sponsored by Milken generated excitement not seen since the signing of the National Cancer Act (The Cancer Letter, Nov. 20, 1995). Milken invited 200 prominent researchers, clinicians, and activists to determine what was to be done. At the summit, Milken was something of a star, rolling out the proverbial war machines and calling for a $20 billion-a-year assault.

Milken’s actions were not as immediate as his words. After the summit, he considered launching a public awareness campaign to coincide with the 25th anniversary of the signing of the National Cancer Act, but ultimately abandoned that plan.

Clearly, Milken had reached a part of his goal: he had mastered the knowledge of cancer politics in Washington. He forged personal ties with virtually all the important players. He knew how these players worked with each other. He hired a lobbying firm to work with his staff of political operatives.

Yet, to the puzzlement and frustration of some insiders (and to the relief of others), Milken was not assuming a commanding role in cancer advocacy, limiting his actions to the politics of prostate cancer.

“To weave your way in these circles is not an easy thing,” said Kam Kuwata, a Milken aide.

“Everything we are doing now grew out of the summit, but it took a while to build the momentum to be where we are today.”

While Milken Pondered…

While Milken was considering launching a national campaign to coincide with the 25th anniversary of the signing of the National Cancer Act, Ellen Sigal was actually working on such a campaign.

Sigal, a former real estate developer and a member of the National Cancer Advisory Board, threw herself into the cause in 1986, after her 40 year-old sister died while undergoing a bone marrow transplant for breast cancer.

Perpetually on the phone, Sigal is something of a Washington focal point in cancer politics. If Person A needs to meet Person B because together they can do something for cancer research, Sigal makes the introductions.

“My premise is that there are people out there who are smarter than I am,” Sigal said. “If I can get them together, I do it. I don’t have all the answers.”

The cancer program did not need a birthday party, Sigal resolved. Instead of coming up with a plan for a celebration, she developed a strategy for influencing Congress.

To begin with, Sigal took her efforts outside NCI, setting up Friends of Cancer Research, an independent group that at first included the oncology professional societies, the American Cancer Society, directors of cancer centers, advocates, and business executives.

Last year, Friends held a series of educational events at NCI designated cancer centers, generating news coverage for the events that brought together patients, scientists and members of Congress. “We got cancer politics out of Washington and took it to the community,” Sigal said to The Cancer Letter.

Exclusive reliance on scientists as advocates for science did not strike Sigal as an effective strategy. Something else had to be thrown onto the battlefield. “I thought it was very clear: you need to combine research, survivorship and high-visibility people in a high-visibility business,” Sigal said.

With the help of Helene Brown, a self-described “political oncologist” and an official at the University of California at Los Angeles, Sigal met Sherry Lansing, chairman of Paramount Pictures Motion Picture Group. As a result, actors and motion picture executives have been making regular appearances on Capitol Hill, and following up by writing letters on appropriations for cancer research.

A Forced Announcement

Meanwhile, conventional wisdom shared by cancer activists suggested that Milken needed an impetus to move from words to action.

That impetus materialized on April 7, on Larry King Live. The show began innocently enough, with Milken, Stovall and Donaldson bemoaning the fact that research financing is meager and cancer advocacy fragmented.

This was hardly earth-shattering stuff. King took the discussion to the next step. “Why aren’t all of you marching on Washington?” he asked the guests during a commercial break. Actually, something of the sort was being considered, he was told.

“Ellen, we have an announcement to make,” King said after the commercial. “We have now formed an army. Correct?”

“We have formed an army,” Stovall responded reluctantly. “Where it will march, when it will march, and how many will march with us is yet to be decided.”

Stovall was horrified. An enormous constituency was being awakened prematurely, without the benefit of strategic thinking.

“It’s a march for hope,” King continued. “Milken will take charge.”

“I am following Ellen,” Milken responded. “I am following Ellen.”

The morning after the unintended announcement before Larry King’s million-strong audience, Stovall, Milken, Donaldson, Sigal, and Kuwata met in Milken’s suite at the Madison Hotel.

“My feeling was that the announcement was irresponsible,” Stovall said. “We are talking about a vulnerable population. Giving them hope then failing to follow through would constitute a betrayal.” Unless a clear plan emerged in a matter of days, Stovall was planning to issue a press release stating that NCCS would not take part in the march.

However, the meeting went smoothly. How much could a march cost? Whatever it was, Milken would contribute 25 percent and challenge his friends to contribute as well. Milken and Kuwata would look for a campaign strategy and logistics wizard. Donaldson would make inquiries on the Hill and tap his wealthy connections. Stovall would handle the interaction with the cancer community. Sigal would float the idea to scientists and celebs.

In his search for someone to design the campaign, Milken consulted Peter Ueberroth, organizer of the 1984 Olympic committee. Ueberroth recommended Walter McGuire.

McGuire moved quickly. His first proposal for the event was dated April 13. “This event can make a huge difference, and it can succeed,” McGuire wrote six days after the show. The Earth Day model would be applicable, which would mean that concurrent events could be held in Washington and around the US.

“I strongly recommend the ‘franchise-type structure we developed for the 20th anniversary of Earth Day,” McGuire wrote. “This involves relatively autonomous local organizations with a strong national structure, consistent educational and advocacy message, professional support, and an umbrella structure to leverage local efforts.”

The Advertising Budget

The $5 million price tag would cover the cost of the campaign on the national level. Additional funds would be raised and spent locally.

Another $10 million would have to be channeled into a nationwide advertising campaign. Was anyone willing to pay for the ads?

A little more than a week after looking over McGuire’s proposal, Stovall and Sigal traveled to the annual meeting of the American Association for Cancer Research.
Coffey, the society’s new president, was darting through the San Diego Convention Center, setting an unusual tone for the meeting. At many a session, he showed slides illustrating cancer mortality statistics in laymen’s terms: five jumbo jets would have to crash every day to equal a day’s worth of cancer deaths in the US. Coffey also provoked public disputes with folks he suspected of being wedded to the established order, lectured San Diego high school students on the wonders of science, and commiserated with postdocs frustrated by their inability to obtain research funds.

It was in the midst of this gathering that Stovall and Sigal met Richard Butera, president of the Sidney Kimmel Foundation for Cancer Research.

Five years earlier, Butera’s daughter, Annie, died of a soft tissue sarcoma at age 25. Soon after the funeral, Butera’s best friend Kimmel, CEO of Jones Apparel, a clothing manufacturing firm, committed $50 million to cancer research. Kimmel recruited prominent scientists to serve on his advisory board, funded research grants, and endowed two cancer centers that now bear his name.

However, funding research was not going to be enough, Kimmel and Butera decided. At the time Butera was introduced to Sigal and Stovall, the Kimmel foundation was planning an advertising campaign designed to wake up the voters.

“Sidney and I talked about a march for next year on our own,” Butera said to The Cancer Letter. “We talked about the need for a bigger, louder voice.”

Soon after Butera’s meeting with Stovall and Sigal, Kimmel committed $3 million to the ad campaign for the march. Meeting the $10 million goal will not be a problem, Butera said. “The rest is coming,” he said. “The march will be the biggest event in the history of America, because there is no issue in Washington bigger than 10,000 Americans dying per week—and dying ugly.”.

In the summer, McGuire’s staff began contacting potential participants of the march. Meanwhile, Stovall and Sigal focused their work on finding money and setting the agenda.

  • The Intercultural Cancer Council, an umbrella organization of scientists, physicians, survivors, and community activists, agreed to provide outreach to minorities and the underserved.
  • The Cancer Leadership Council, a patient led forum that meets once a month to define issues of quality cancer care, agreed to develop messages on access to clinical trials, employment and insurance discrimination, and end of life issues.

CLC, a group formed to pursue the patient agenda during the 1993 health care reform debates, includes NCCS, Cancer Care Inc., Y-Me, US TOO, the National Alliance of Breast Cancer Organizations, the Susan G. Komen Foundation, the Candlelighters Childhood Cancer Foundation, and the North American Brain Tumor Coalition.

The groups that regularly attend CLC meetings include the American Cancer Society, the Leukemia Society, the American Society of Clinical Oncology, the Oncology Nursing Society, and the National Breast Cancer Coalition.

  • Sigal’s Friends of Cancer Research began drafting the research agenda for basic, translational, and clinical research.

Sources said the research agenda is almost certain to be more ambitious than the NCI Bypass Budget, the best-case scenario that is submitted by the Institute director to the President. The Bypass Budget for fiscal year 1999 is expected to be $3.2 billion. The NCI appropriation for fiscal 1998, which has not been completed by Congress, is expected to be between $2.4 billion and $2.5 billion.

“There is a mistaken belief out there that you shouldn’t throw money at science,” Coffey said to The Cancer Letter. “Is there any other way to attract people from the fields of biology, physics, chemistry, systems analysis, informatics? If scientists in these fields become aware of opportunities for funding in cancer, they will come into the field, bringing with them an influx of new ideas.”

On Sept. 8, Friends held the first meeting of a task force to assess needs and opportunities in cancer research. Anna Barker, president and CEO of Oxis International of Portland, OR, chaired the meeting.

The funds for the march are starting to flow, too, Stovall said. In addition to contributions from Milken and Kimmel, Bristol-Myers Squibb, Pharmacia & Upjohn, and OnCare Inc. have made contributions and pledges, Stovall said.

The Real Announcement

Though Coffey did not appear on Larry King Oct. 23, his ideas and iconography were undeniably in the air.

Crawford, the model, delivered a Coffeyism she had learned at a briefing before the show: “We hear all of these statistics, like 1,500 people a day die of cancer, but you go well, 1,500, there’s so many people who live in America.

“But that breaks down to five jumbo jets a day crashing and burning. A day. I mean, we had one terrible crash last summer and we’re still investigating it and still talking about it, and people are still affected by it.

“But this is five a day, every day, 365 days a year. I just think that really touches home. You think, my God, we’ve gotta do something,” Crawford said.

A straight line for another Coffeyism was tossed gently to a prostate cancer survivor named Norman Schwarzkopf:
“General, could you have [fought the Persian Gulf War) on a $2 billion budget?” Stovall asked.

“At $2 billion that wouldn’t have been a war,” replied Schwarzkopf, a call-in guest. “That would have been a minor skirmish.”

Schwarzkopf said he would come to the march. “I challenge every cancer survivor, I challenge every American, to be there with us,” he said.

The Dilemma for NBCC and ACS

In the context of the Earth Day model, support from existing organizations is desired but not essential.

In 1970, the National Wildlife Federation and the Audubon Society declined to take part in the event, Hayes said.

“There was some degree of hostility on the part of old-line conservation groups,” Hayes said to The Cancer Letter. “We went around them to their members.

“If the National Wildlife Federation didn’t want to communicate with its members, then we got ministers, teachers and journalists to communicate with them. We used every avenue of communication we could find, and in the end, every member of a conservation group came to understand that they were now part of the environmental movement,” Hayes said.

Now that the organizers of the march are starting to invite other groups to take part in the event, for some the decision will be a straightforward yes. AACR, the Oncology Nursing Society, and the American Society for Clinical Oncology didn’t have to think hard before joining.

“I hope that our members will see this as an opportunity to improve cancer care and cancer research,” said John Durant, ASCO executive director. “They can communicate with their patients, take part in letter-writing at the national level and in their states. I do think that all politics is local, and this is a way to get involved.

“Their patients certainly feel strongly about this,” Durant said to The Cancer Letter.

For the National Breast Cancer Coalition and the American Cancer Society, the decision is anything but straightforward. Both organizations last week decided to support the march in concept, but both are asking questions about the event, and neither has defined a level of commitment.

For NBCC, participation could pose the danger of diluting the message, getting involved in pursuing someone else’s agenda, and-possibly—the threat of having to compete for funding with a visible new entity.

At a meeting last week, the NBCC board approved the concept of working together with other groups in instances where agenda items coincide while respecting everyone’s structural integrity and independence,” said Fran Visco, president of NBCC.

“We are assuming that there are opportunities to work together on what the march should be,” Visco said to The Cancer Letter. NBCC would like to know how the march organizers make decisions, who makes those decisions, how money is raised, who approves messages, and how spokespersons are selected, Visco said.

“If they are successful in increasing funding for cancer research, who is going to decide how the money is spent?” she said.

ACS is wrestling with similar problems, sources said.

The society has a network of volunteers and maintains a mailing list of prospects for fundraising. If the march generates a database with fundraising prospects and launches a political organization, that organization could end up competing with ACS. In fact, control over prospect lists has been a contentious issue in the ACS relationship with advocacy groups (The Cancer Letter, Feb. 7).

Initially, ACS instructed its divisions not to participate in the march, but later reversed its position.

“The Society’s Strategic Staff Leadership Group [recommended that] the Society not commit any material resources to, or participate in, the proposed March Against Cancer,” the society’s national office wrote in a newsletter sent to the division leadership.

In a subsequent communication to division executives, ACS offered a different directive:

“Since the goals of the march reflect the priorities clearly defined in our Mission and 2015 goals, ACS has announced its endorsement of the march on a national level, and will share information about this campaign with the public.

“As organizers identify specific activities to support and promote the march, ACS will look at additional opportunities for involvement. Organizers will also be reaching out to ACS Divisions for their participation locally, so we will keep you updated as we learn more about their plans and hope you will do the same.

“In the meantime, Divisions should feel free to build on the Larry King Live announcement by tying the march goals to our agenda for advancing quality cancer control outcomes and advocating aggressively on behalf of cancer and cancer patients.

“This is a wonderful opportunity for ACS to remind the public, media, and lawmakers that we want to significantly reduce cancer mortality by 2015, and that we have identified steps necessary to do that through specific local and national activities.

“The march provides a framework for ACS and other supporting organizations to highlight these steps and join together in calling for cancer to become a national priority,” the executive notice states.

Dean Gesme, a member of the ACS representative assembly and the NCCS executive committee, said the differing statements could create confusion.

“We are getting mixed messages, but my hope is that within smaller communities people will see no reason not to be supportive of the march,” said Gesme, a medical oncologist in Cedar Rapids, IA.

“ACS has stated for several years that advocacy is part of their mission,” Gesme said. “This is one of their first opportunities to demonstrate this to the American people.”
March organizer McGuire said the society has nothing to fear.

“If you have millions more people involved in this, you will have more people who can fund the American Cancer Society,” he said. “If you can get people to commit to an issue, they don’t write checks to one group only, and they write more than once a year.

“Look at what the churches do. They ask every week, and you give.”