It looked as though Fran Visco was demanding money for a disease other than cancer.

She did not exchange nods with other cancer activists, did not shmooze with the lobbyists who accompanied them. Instead, Visco sat down with a groups of ‘women, several of them wearing ribbons emblazoned with “$300 million more,” the slogan of the Breast Cancer Coalition over which Visco presides.

Taking the stand before Senate Labor, HHS, Education Appropriations Subcommittee, the diminutive 44-year-old Philadelphia trial lawyer and breast cancer survivor assumed the tone unheard of when cancer groups come to ask Congress for money:

When the men in suits all but destroyed the savings and loan system in this country, the nation’s economic stability was threatened and this Congress responded with billions of dollars.

Because our cities are in danger of extinction, this Congress has found a way to appropriate emergency funds for the urban crisis.

When this administration decided to wage a war, you found $7.5 billion to fund it.

Women have declared war on breast cancer and you had better find a way to fund that war.

Women refuse to fight with other diseases for which no funds are available. That would be going by existing rules, and too many women die under those rules.

It is not enough that we can all say breast cancer aloud. And it is not enough to say you want to help us.

We will no longer be passive. We will no longer be polite. We can no longer afford to wait while Congress gets around to significant, decent funding for breast cancer.

We implore you: you must find a way to appropriate the additional $300 million for breast cancer research now. We can accept no less.

From the perspective of professional societies, NIH and NCI, this is an outlandish figure that would increase spending on breast cancer to $433 million, almost double the bypass budget level of $220 million, which NCI says would meet all opportunities in breast cancer research in FY 1993.

“I think that if they had taken the same tactic, but asked for something more in line with the bypass budget, we would have been more supportive of them,” said a lobbyist for one of the professional societies.

With the congressional appropriations cycle half- over, the Breast Cancer Coalition has not been able to bring additional funds into the cancer program. However, this is not to suggest that the coalition has been ineffective. Strapped for funds yet unable to say no to a vocal constituency, Congress has done what it could: mandate a diversion of funds from existing NCI programs.

Last week, the House Appropriations Committee, apparently in response to pressure from the Breast Cancer Coalition and its supporters in the Congressional Caucus for Women’s Issues, mandated a $40 million increase in NCI’s spending on breast cancer research. Altogether, $70 million was reallocated to breast, cervical, ovarian and prostate cancer programs (The Cancer Letter, July 31).

For years cancer researchers looked wistfully at the appropriations hauled in by the politicized AIDS activists. What would happen if cancer patients became as politicized? Would more money suddenly be found for cancer?

Now the time for wondering has passed.

Like it or not, breast cancer patients have moved beyond battling paternalistic surgeons. Politicized and militant, they are taking on Congress, the President and NCI.

From Stop the War to Stop Breast Cancer

It is certainly a phenomenon where political style and political tactics are firmly rooted in demographics: the kids who once opposed the war are started to get suspicious mammograms.

“The nature of breast cancer is such that it is starting to affect people who grew up in the sixties,” Visco said to The Cancer Letter. “We are activists. That’s our nature.”

This shared political temperament made it natural for the new generation of cancer advocates to accept the lessons of AIDS activism.

“From AIDS activists we learned what would happen when you open your mouth and make demands,” Visco said. “That’s where we are now, and that seems to be what the people in power respond to. We are grateful to AIDS activists for showing this to us.”

The newly politicized stance is reflected in the coalition’s rhetoric.

“I recognize how starkly dissimilar my [Senate] testimony was from other testimony given that day,” Visco said. “I thought it was time to give this kind of a speech. I thought it was time for them to understand that we are serious, that we mean this, and that we are not going to go away.”

The Breast Cancer Coalition was started early in 1991 by leaders of Cancer Care, Cancer Patients Action Alliance, Faulkner Breast Center, Mary Helen Mautner Project for Lesbians with Cancer, National Coalition for Cancer Survivorship, National Alliance of Breast Cancer Organizations, Women’s Community Cancer Project and Y-ME. Since then, 160 organizations, including the American Cancer Society, joined the coalition.

Last October, the coalition decided to flex its muscles by deluging official Washington with letters demanding additional funds for breast cancer research. The goal was to generate 175,000 letters, one for each woman diagnosed with breast cancer last year.

Instead, over 600,000 letters were generated. About 140,000 letters, addressed and delivered to the White House, are yet to be acknowledged by the Bush Administration, said Sharon Green, head of Y-ME and one of the founders of the Breast Cancer Coalition.

After some negotiations, a White House staff member showed up at the side entrance of the Old Executive Office Building to accept the boxes. According to Green, the staff member stood idly while late stage breast cancer patients were placing the boxes on the conveyor.

“Our feeling was, they are probably on the way to ‘ the shredder,” Green said to The Cancer Letter.

Room for ‘Moderates?’

The $300 million figure was derived last February, after the coalition held a conference on prevention, epidemiology, basic, and clinical science.

Following the conference, the coalition’s “research task force,” which includes activists as well as  physicians and PhDs, arrived at the number.

Among the recommendations considered was one by Virginia Soffa of Vermont’s Breast Cancer Action Group. By comparing incidence vs. federal spending on AIDS and breast cancer, Soffa interpolated that breast cancer research should get $4.3 trillion to reach equivalency with AIDS.

While reasonable to some activists, the $300 million figure amounted to heresy in the eyes of the groups committed to pursuing another ambitious goal: closing the gap between NCI’s bypass budget and the funds appropriated to the Institute.

Some patient advocacy groups, most prominently, Nancy Blinker’s Susan G. Komen Foundation, chose not to join the coalition. The American Cancer Society, also a supporter of the bypass budget, chose a different strategy.

“We knew from the outset that there would be events in which we would not care to participate,” said Joann Shellenbach, spokesman for ACS and a member of the Breast Cancer Coalition board. However, the benefits of being part of an emerging political force outweighed the potential costs, she said.

“We’ve reached a level of understanding with their national board,” Shellenbach said. “It’s the local chapters with whom we have problems to iron out.”

Along with the National Coalition for Cancer Research, ACS is on record asking for a $170 million increase for the entire NCI in FY93 and is opposed to diverting funds from existing NCI programs.

Later this month, at a meeting in Washington, a group of members of the society’s public issues committee will gather to decide the future of ACS membership in the coalition.

“I suspect that we will give it another year,” Shellenbach said. “The coalition and ACS have disagreed on certain matters, but we haven’t been embarrassed. We’ve disagreed, we’ve been comfortable about doing it.”

Joanne Howse, the Breast Cancer Coalition’s Washington lobbyist and partner in the lobbying firm Bass & Howse, said she would like to see ACS remain in the coalition.

“If they decide to leave, from my perspective it would be a serious loss,” Howse said. “But again, they obviously have to be supportive of all cancers and they have their own political considerations.” 

T-shirts at Rayburn

Earlier this year, under questioning by Rep. William Natcher (D-KY), NIH Director Bernadine Healy said that “despite NIH’s enormous support of women’s health research, I think it would be destructive to planning and destructive to the broad goals of the NIH to have $500 million [including $300 million for breast cancer] earmarked specifically for women’s research.”

Similarly questioned by Natcher, NCI Director Samuel Broder asked: “Sir, are you asking me for my professional judgment?”

NATCHER: “Yes, I am.”

BRODER: “Our FY 1993 bypass budget request for breast cancer was approximately $220 million.”

These statements notwithstanding, Howse said she is convinced that Broder “is not going to turn the money down if ifs there.”

The infusion of $300 million for breast cancer research could force NCI to operate more efficiently, she said.

“When they tell us how long it takes to get the grants out, women become very impatient,” Howse said to The Cancer Letter. “Let’s get the money out. Let’s not create the kind of bureaucracy that can’t get the money out efficiently. Let’s do something different.”

Visco is similarly confident. “We can show [Broder] that the money would not be wasted,” she said.

As the Breast Cancer Coalition stood by its demand, the $300 million figure made its way into a letter signed by 20 members of the Congressional Caucus on Women’s Issues. Later, the figure appeared in the NIH reauthorization bill.

Then, as members of the Labor, HHS, Education Appropriations Subcommittee went to a closed session to mark up the FY93 budget, women in T-shirts inscribed with demands for “$300 million more” lined the halls of the Rayburn House Office Building.

“We aren’t doing street theater, we aren’t interrupting meetings like ACT-UP,” said Y-ME’s Green. “What we do is line the halls. They knew we were there. We did not have to shout.”

Most recently, the coalition’s goals got another boost when Democratic presidential contender Bill Clinton told a group of breast cancer patients that he supported the $300 million increase.

Looking for Funds

Howse said she was disappointed to see “one disease played against another disease” in the House report.

“You can’t get any money from Labor, HHS,” she said. “There isn’t any money there. We want to get it elsewhere.” Most likely, the group would call for cuts in the defense research and development budget, she said.

“We believe that we don’t have to take money from other diseases,” Howse said. “We are trying to figure out a way to increase the pie for breast cancer research. What we would like to see is that we increase the pie for everyone, so we are seen as heroines.”

So far, attempts to cut the superconducting super collider and the space station have failed in Congress, and if the cuts are made, it is far from certain that in the current fiscal climate Congress would apply the funds to anything other than deficit reduction.

Be that as it may, the Breast Cancer Coalition is preparing for its next political action:

Not revealing the details, Howse says only that a large number of coalition members will come to Washington on Sept. 9, the first day of Senate markup of the HHS budget.