When it comes to ending breast cancer, Fran Visco doesn’t think pink ribbons and mammograms will get the job done.
Visco is president of the National Breast Cancer Coalition, a group of hundreds of organizations and thousands of individual activists focused on fighting cancer. Her group, which has successfully lobbied for $2.8 billion in federal funds for research in the past 20 years, has set a goal of ending the disease by January 2020. She thinks the way to do that is through science—specifically, through studying how the cancer develops and metastasizes.
“We get sidetracked by efforts to focus on getting every woman a mammogram. We could screen every woman in the world and we would not have stopped breast cancer,” she says. “I am not saying to stop funding for screening; however, we cannot afford to make it a main focus.”
Breast cancer is in the spotlight following the recent controversy at the Susan G. Komen foundation, which cut funds to Planned Parenthood amid pressure from Catholic bishops, then restored the funds after a backlash. Donors are questioning where their dollars go. Visco says that can be a good thing—it can spark a rethink.
The breast-cancer industry has become “such a huge beast,” she says, that it has “lost touch with the goal of saving lives.” She adds, “I understand the emotional pull of getting together for a race to raise money. I understand the need to raise awareness. Many of our members wear pink ribbons; I respect that. The question is, what are we raising awareness of? Where is the money going? What is it accomplishing?”
Visco believes the solution lies in science. “We have to understand which cancers are life threatening and figure out how to stop those,” she says. “Mammography, or any imaging modality, will never be the answer to breast cancer. It has inherent limitations that cannot be overcome. It simply finds some cancers that already exist.”
The mortality rate for breast cancer has declined in the past three decades. In 1975, there were 31 deaths for every 100,000 women in the U.S., according to the National Cancer Institute. In 2007, the latest year for which statistics are available, there were 23 deaths for every 100,000 women.
Some experts say that’s not good enough.
For instance, while it’s not an apples-to-apples comparison, the cervical-cancer death rate declined by almost 70 percent between 1955 and 1992, according to the American Cancer Society. The drop was attributed primarily to the increased use of the Pap test, which can find changes in the cervix before cancer develops.
The decline in the breast-cancer mortality rate is “not a significant difference, given the investments of billions of dollars,” says Visco.
To back up her point on the limits of mammograms, she cites research showing that while the number of mammograms has dramatically increased in America, death rates have not dramatically decreased. The percentage of women age 40 and older who reported having a mammogram rose from 29 percent in 1987 to 65 percent in 2008, according to the National Health Interview Survey, she says. In contrast, she says, the mortality rate has decreased by an average of 2.2 percent per year from 1990 to 2008, according to the National Cancer Institute.
She also points to research from the World Health Organization showing that while North America conducts as many as three times the number of mammograms as less-developed nations, the mortality rates are not substantially different.
Visco acknowledges that her stance is not always popular. A woman whose life was saved by a mammogram would argue that such screenings should be the top priority, she says. “But it’s more complicated than that. It is about the biology of the disease.”
H. Kim Lyerly, a George Barth Geller Professor of Cancer Research at Duke University, also points to flaws in mammograms, noting that “early detection” is not always what it seems. A screening might detect a lump that has been growing slowly for years, he notes. “We need to detect the true early signals of malignancy—what makes the cancer grow and become lethal. That’s where we have a real need.”
Other experts stress the importance of screenings. Marc Hurlbert, the executive director of the Avon Foundation Breast Cancer Crusade, says his organization splits its funding for screenings and science fairly equally. The foundation allots 75.5 percent of its funds to grants, including breast-cancer research and programs that include screenings; the rest goes to fundraising and management. “Research will end the disease,” he says, “but we have to take care of women who have the disease today." He believes a new approach to managing research is needed—a “project-management-type approach” that gets scientists to collaborate.
Otis Webb Brawley, chief medical officer and executive vice president of the American Cancer Society, agrees that research needs to focus on the “inner workings” of breast cancer—on “what’s going on inside the cell.” At the same time, he credits mammograms for 40 percent of the decrease in the annual breast-cancer mortality rate. He says money needs to go to "the best ideas at the time."
Eric Winer, chief of the Division of Women’s Cancers at the Dana-Farber Cancer Institute and chief scientific advisor to the Komen foundation, says both science and screenings play key roles. “Our research efforts should be devoted to understanding the molecular drivers of cancer growth, and we need to develop therapies that can stop cancer in its tracks," he says. "Although our clinical trials will benefit future generations, we cannot ignore the people who are facing cancer today.” The Komen foundation allots 23 percent of its funds to research and 16 percent to screenings; 37 percent goes to education, 7 percent goes to treatment, and the rest goes to fundraising and administration.
George W. Sledge, co-chair of the Breast Cancer Program at the Indiana University Cancer Center, says he prefers a “broad-based” approach. “It’s a complex disease,” he says. “We’ve learned that it’s a family of diseases. Think of it as a boarding house where a bunch of criminals hang out—some are petty thieves; others are killers. You try different approaches. You never know what will be the big winner in science five or 10 years out.”
A key mission for Visco’s group has been raising funds for a Department of Defense initiative called the Breast Cancer Research Program. Visco’s organization has lobbied for $2.8 billion in federal funds for the program since its start in 1992. “There is a great deal of biomedical research that occurs within the Department of Defense,” Visco says. “The breast-cancer program has produced extraordinary results, from new methods of extracting breast-cancer cells at their earliest stages, to unprecedented research into gene/environment interaction. It has produced fascinating insights into the biology of breast cancer and has directly impacted lives; for example, the program funded some of the initial work that led to the development of the first targeted therapy in breast cancer, Herceptin.” Visco's group also supports research into vaccines, among other projects.
As for the controversy at the Komen foundation, Visco says she doesn’t expect it to have a major impact on cancer research. Komen recently canceled its annual lobbying day amid the fallout—an important day at which cancer activists lobby on Capitol Hill for government-run initiatives, not Komen programs. The move raised concerns about far-reaching effects on cancer research. Visco says, “There are researchers out there who have big visions and are constantly challenging themselves—people like that find a way to get their work done.”
She notes that the National Breast Cancer Coalition will hold its own lobbying day on Capitol Hill on May 8, with more than 600 advocates lobbying to advance legislation and public policy. Specifically, activists will be asking members of Congress to support the Accelerating the End of Breast Cancer Act, which “defines an important role the federal government must play to reach the breast-cancer deadline-2020 goal of ending breast cancer,” says Visco.
Activists will also be advocating for fiscal-year 2013 funding for the Department of Defense Breast Cancer Research Program, among other programs. All volunteers are welcome to join the lobbying group, Visco says.
Visco is a breast-cancer survivor herself. Diagnosed at age 39 when she was a partner in a Philadelphia law firm, she left her law career to help launch the National Breast Cancer Coalition in 1991. She and a group of like-minded women “just started putting this together,” she says. “A number of groups met with us in Washington. For me, that day was an epiphany. It became a real movement, a grassroots movement,” she says. Not everyone signed up for the coalition, she says, noting that the Komen foundation did not join.
“The thing that excites me the most about the past 20 years is seeing women tackle complicated and complex issues,” Visco says. She adds that her group is perhaps not as well known as other major cancer organizations because “we never focused on marketing ourselves—we focused on doing our work.”