Fran Visco never asked for $300 million in breast cancer research funding—she demanded it.
An activist of the 1960s, Visco, president of the National Breast Cancer Coalition, changed the landscape of funding for breast cancer research during her 1992 testimony in front of Congress.
“We took a lesson from AIDS activists, and we made a case for why $300 million more was the right number,” Visco said to The Cancer Letter. “They didn’t do it by simply, politely, and softly knocking on a door and saying, ‘If you wouldn’t mind.’ They did it by laying a case for why they needed more money, and then demanding that, and collaborating with scientists to make certain that message got through to Congress.”
At the time, professional societies, NIH, and NCI deemed $300 million in breast cancer research funding “an outlandish figure.”
Visco wasn’t going to achieve NBCC’s goal by going the traditional route of snooze-worthy testimony. She realized this on the train to Washington from Philadelphia, where she was unimpressed with the prepared remarks from NBCC.
“It was very traditional testimony about why we needed more money for breast cancer research,” she said. “I’m an activist from the sixties, women’s rights, anti-war. It just didn’t ring well with me.”
On the train, Visco revised these remarks. “To sit there and just politely ask ‘If you wouldn’t mind,’ that was not my world.”
The testimony itself was for what was known as “Disease Day” on Capitol Hill. “Organization after organization [was] going up and asking for money for research, for their particular issue,” Visco recalled recently. “It was all very polite. It was: ‘We understand that it’s difficult, but if you could see your way through, we would like level funding.’”
As a partner at a law firm in Philadelphia who sits on nonprofit boards, this tip-toeing around the issue was not Visco’s way.
“When it was my turn to get up, I gave the testimony that I had worked on, on the train on the way down,” she said. “It was very much, ‘You found money for a lot of issues—for a war and to bail out the men in suits who all but would destroy the savings and loan system in this country—you can find $300 million more to save women’s lives.’ That was the tone of the testimony, and why I used that tone.”
However, the testimony didn’t immediately lead to success. Sen. Tom Harkin (D-IA), chair of the Department of Defense Appropriations Subcommittee, told Visco that he could not get $300 million more in the domestic budget.
“But every year, Tom Harkin introduced a transfer amendment to transfer like $4 billion from the domestic budget to the defense budget, to fund women and children’s issues,” she said.
A supermajority was needed to transfer money at the time.
“We convinced him to put our $300 million more in the transfer amendment. He managed to get $220 million in the domestic budget for NCI,” Visco said. “And then he put $210 million in the transfer amendment, because that would have been $300 million more than the prior year for breast cancer research.”
NBCC worked with Harkin to pass the amendment, but the amendment failed. As a result, they worked together on a separate amendment for $210 million that would go toward a peer reviewed DOD Breast Cancer Research Program, “leave it in the defense budget, and then it would only need a simple majority to pass the Senate.”
The amendment passed, which didn’t come as a surprise to Visco.
“We were so passionate and so committed to our mission to end breast cancer,” she said recently. “We were so convinced that $300 million more was needed and that it could be well spent. We knew that we had the amazing power of these grassroots voices from across the country, focused on this one issue.”
This grassroots enthusiasm could be heard the day Visco gave her testimony to Congress.
“The fact that Paul Goldberg was sitting in the room that day, and the fact that my remarks resonated with him, and he wrote about it in The Cancer Letter. That also created a lot of attention and support for the breast cancer movement that was just beginning at the time.”
An excerpt of Fran Visco’s testimony on “Disease Day” to the Senate Labor, HHS, Education Appropriations Subcommittee, July 29, 1992 (The Cancer Letter, Aug. 7, 1992).
Visco spoke with Alexandria Carolan, a reporter with The Cancer Letter.
Fran M. Visco: For the National Breast Cancer Coalition, the first priority we took on, the first campaign we took on, was to increase federal funding for breast cancer research. I remember the board meeting—back then we were meeting once a month.
The board was made up of 25 groups from around the country. That particular board meeting happened to be in my law firm conference room in Philadelphia. We were sitting around the table and talking about, “Okay, we want to ask Congress to appropriate more
money for breast cancer research, but how much should we ask for?”
Someone wanted to ask for one billion dollars, and someone else wanted to ask for one million, because they didn’t want to make anyone angry. And finally, Mary Jo Ellis Kahn from Virginia stood up and said, “I think we should find out what number the scientific community can spend well over the next year, and that’s the number we should ask for.”
Of course, that made sense to the rest of us, and so we decided we were going to hold our own hearings. We were going to have scientists talk to us about how much money they felt could be well spent. We also did our own independent research. As a result of the hearings that we held asking scientists that question, and our research, we came up with a plan that Congress could appropriate an additional $300 million for breast cancer research—and the scientific community could absorb that amount.
We didn’t want to just throw money out there, “Oh yeah, one billion dollars.” We wanted to make certain it was the right number that could be absorbed well by science.
So, we launched our $300 million more campaign. We had the opportunity to testify before the Senate appropriations subcommittee on defense or the Senate appropriations committee about what it was we wanted for appropriations that year.
FV: We had written up testimony. I was on the train coming to Washington from Philadelphia from my law practice, and I was reading that testimony—and you know, I’m a litigator and an activist from the ’60s, women’s rights, anti-war. It just didn’t ring well with me that it was this kind of testimony. It was very traditional testimony about why we needed more money for breast cancer research.
Then I got to the hearing room. I was sitting in the back of the room—and I was last on the agenda. This was Disease Day on Capitol Hill. So, it was organization after organization going up and asking for money for research, for their particular issue. It was all very polite. It was: “We understand that it’s difficult, but if you could see your way through, we would like level funding,” or whatever they were asking for.
I remember sitting there thinking, “I don’t think this is right. This isn’t the way to make your case.” Also, you have to understand that this was not my world. I didn’t come out of the nonprofit world. I came out of being a partner in a law firm in Philadelphia. I came out of sitting on nonprofit boards. I came out of activism. To sit there and just politely ask, “If you wouldn’t mind,” that was not my world.
When it was my turn to get up, I gave the testimony that I had worked on, on the train on the way down. It was, as you know, it was very much, “You found money for a lot of issues—for a war and to bail out the men in suits who all but would destroy the savings and loan system in this country—you can find $300 million more to save women’s lives.” That was the tone of the testimony, and why I used that tone.
FV: I have to say, it not being my world, I don’t know who or how they asked for money before. I only know how they were asking for money that day in that Senate hearing room. I did know that previously the AIDS activists had been very successful in getting increased attention and increased funding for HIV-AIDS research.
They didn’t do it by simply, politely, and softly knocking on a door and saying, “If you wouldn’t mind.” They did it by laying a case for why they needed more money, and then demanding that, and collaborating with scientists to make certain that message got through to Congress.
We took a lesson from AIDS activists, and we made a case for why $300 million more was the right number. We also demanded $300 million more. At one point in this whole process, someone came to us and said, “OK, you made your point, now what will you settle for?”
I remember we said, “What do you mean, what will we settle for? $300 million more is settling, because it’s been a lot of years since there’s been a significant amount of money for breast cancer research. So that is the amount that we want, and that is the amount that we will push for.”
FV: Well, at the time it was really interesting, because there really wasn’t an activism movement around breast cancer yet, and there clearly was a need for it and a desire for it.
When we first started the National Breast Cancer Coalition, we started with petition campaigns, letter writing campaigns, and back then there really wasn’t any internet. So, you are actually getting people to write letters and stand on street corners to sign petitions, demanding more money for breast cancer research.
It grew. More and more organizations heard about NBCC, heard about the petition campaigns, and it just expanded. We were hearing from people all across the country, “It’s about time,” “We want to be a part of this,” “This has to happen.”
I think in part, it was that these were mostly women who had grown up in the ’60s and they were there for the movements, for the women’s rights movements. They weren’t used to being quiet about the goals that they had. When we started NBCC, it really resonated with that grassroots network across the country.
FV: It was exciting in the beginning. I remember my sister, who’s 10 years younger than I am, my youngest sister, saying when she went to college—she couldn’t wait to get there because she wanted to be part of activism and movements.
She said, “and no one’s doing that. Why not?” So, I told her she should start something. I really do think it was the group of women at the time, and men, but mostly women who came together. What they had been through in the ’60s and ’70s, what they were used to. They were used to demanding policymakers’ action and attention.
FV: Once we were successful in launching the DOD Breast Cancer Research Program and getting the $300 million more appropriations through the federal government, we knew that we needed to stay focused on making certain that continued. Year after year, our grassroots network grew with more and more people.
We trained people on how to speak to Congress, how to lobby as grassroots advocates. We had lobby days. We started formalizing the kind of advocacy we were doing to increase funding. We created a larger network, we created partnerships with people on the Hill to help keep the momentum going. It just grew, kept growing, and became very successful.
FV: In the beginning, the groups that founded the National Breast Cancer Coalition were some groups that aren’t in existence anymore. Like Y-ME, a support group out of Chicago—a national group, but they were headquartered in Chicago.
NABCO, the National Alliance of Breast Cancer Organizations—that was originally founded by Rose Kushner, and then run by Amy Langer—and the Women’s Community Cancer Project of Boston, “Can Act” out of New York, the Mautner Project for Lesbians with Cancer, and others. Then, the Greater Washington Coalition for Cancer Survivorship, and, of course, Susan Love.
Some of these organizations aren’t around anymore. The Women’s Community Cancer Project is, but the others are not. Those were the groups that came together. The groups that then became part of the network and really part of the pushing for increased appropriations and understanding the power that they could have on Capitol hill—those were really local groups.
Some of them were started as support groups, breast cancer support groups. SHARE in New York. Some of them just started as a group of women who had heard about NBCC. Maybe they subscribed to the NABCO newsletter, or they just heard about us. We had been getting some attention at the time, and so they joined together to form groups.
Then because of our letter writing and petition campaigns, groups started like the Rhode Island Breast Cancer Coalition, St. Louis Breast Cancer Coalition, Michigan. A lot of groups started around the Breast Cancer Coalition and to become part of NBCC.
So again, these were groups of women, and some men, who came together to become activists for the cause. In the very beginning of the organization, the American Cancer Society was part of NBCC for the first couple of years.
FV: When I first wrote the revised remarks, I had said, “white men in suits.” Then, I guess I wasn’t as brave as I thought I was at the time.
When I was sitting there at a table, talking to white men in suits, I decided to leave “white men in suits” out of the equation. That’s the only reason why.
FV: Yes. Well also, in the audience, and I didn’t know this—but a couple of breast cancer survivors had read about the testimony, and that I was on the list to testify. One of the people in the room that day was Christine Brunswick, who became the first vice president of the National Breast Cancer Coalition, and a dear, very close friend of mine.
At the end of the testimony, she came up to me and said, “That was so incredibly motivating and empowering. I want to be part of this.” And so she spread the word too, about what was happening in Maryland and D.C. About the Breast Cancer Coalition, and what kind of activists we intended to be.
FV: Our $300 Million More campaign resulted in incredible advances, certainly in funding for breast cancer research. The DOD peer-reviewed Breast Cancer Research Program came out of our $300 million more Campaign because Tom Harkin, at the time, was the chair of the DOD Appropriations Subcommittee, and I remember he said to me, “I cannot get $300 million more in the domestic budget.”
But every year, Tom Harkin introduced a transfer amendment to transfer like $4 billion from the domestic budget to the defense budget, to fund women and children’s issues. You needed a super majority to transfer money at the time. We convinced him to put our $300 million more in the transfer amendment. He managed to get $220 million in the domestic budget for NCI. And then he put 210 million in the transfer amendment, because that would have been $300 million more than the prior year for breast cancer research.
We worked with him to try to get the amendment passed, but it failed. We also worked with him to have a separate amendment once the transfer amendment failed. The separate amendment would take the $210 million, create a peer reviewed DOD Breast Cancer Research Program, leave it in the defense budget, and then it would only need a simple majority to pass the Senate.
We worked with him, and with [Sen.] Al D’Amato [R-NY], and [Sen.] Arlen Specter [R-PA], at the time, to get Republican support for that amendment—and that amendment passed. That’s what launched the DOD peer-reviewed Breast Cancer Research Program.
FV: I know it surprised a lot of people that we were successful, but it didn’t surprise us, because we were so passionate and so committed to our mission to end breast cancer.
We were so convinced that $300 million more was needed and that it could be well spent. We knew that we had the amazing power of these grassroots voices from across the country, focused on this one issue. We were not surprised at all that we were successful.
But I think what was surprising to a lot of people, was once we were successful, we weren’t willing to just then go back home and say to the scientific community, “Now you can do whatever you want.” Because that’s when we started training ourselves to understand the language and the concepts of science, so that we could have a seat at the table and help oversee how those dollars were spent.
That shook up the scientific community quite a bit. They loved us when we were lobbying for more money, but many of them were not that happy when we wanted to have a say in how it was spent. I think also, the power of the voice, the power of grassroots, the power of the pen too.
The fact that Paul Goldberg was sitting in the room that day, and the fact that my remarks resonated with him, and he wrote about it in The Cancer Letter. That also created a lot of attention and support for the breast cancer movement that was just beginning at the time.
FV: Thank you. Great to talk to you.
