Vol. 343 no. 6178 pp. 1460-1461
- Jocelyn Kaiser Science 28 March 2014:
Vol. 343 no. 6178 pp. 1460-1461
For more than 2 decades, Fran Visco, president of the National Breast Cancer Coalition, has been a force behind the second biggest U.S. breast cancer research program.
Frances Visco may be the most influential nonscientist ever in the field of breast cancer research. Her grassroots patient advocacy group, the National Breast Cancer Coalition (NBCC), has a small staff and does not run a research foundation. It has no scientific advisory board, although “we talk to scientists all the time,” says spokeswoman Michelle Zelsman. Yet the coalition has had an out-sized influence on how breast cancer research money is spent. Twenty-two years ago, the group convinced Congress to put $210 million into a new breast cancer research program in an unusual place—the Department of Defense (DOD). Since then, that program has awarded nearly $3 billion in grants, making it the second largest funder of breast cancer research in the United States after the National Cancer Institute (NCI).
Visco has sat on the oversight board from the beginning. Her group has pushed for high-risk, high-reward research and studies that affect cancer patients’ lives. Many say the DOD program has been a big success, drawing new talent into the field and launching research that might not have made it through NCI review.
But Visco is not satisfied, noting that, in her group’s view, the decline in mortality from breast cancer over the past 2 decades is not significant. That’s why 4 years ago her coalition made another unusual move: It vowed to “end breast cancer by 2020” by attracting scientists to pursue what some say are wildly ambitious goals, such as a preventive cancer vaccine. For a group that prides itself on embracing evidence-based medicine, it was a surprising turn.
In a recent interview at the coalition’s office in downtown Washington, D.C., Visco discussed how its thinking has evolved since 1992. “In those days, we talked in terms of ‘We just need to find who the best scientists are, the most creative and make sure they have the money they need to do what they do,’ ” Visco said. “Maybe that was very naive.”
Call in the Army
Visco left a law practice to help launch NBCC after being diagnosed with breast cancer at age 39, joining other breast cancer activists including epidemiologist Kay Dickersin of Johns Hopkins University in Baltimore, Maryland, who had also had breast cancer, and breast surgeon Susan Love. They followed the lead of AIDS activists, who had shown that patients could be a powerful force in boosting funding for their disease. In fall 1991, the newly formed coalition issued a call to supporters that drew 600,000 letters asking Congress to increase funding for breast cancer research. The group then held its own “research hearings” on Capitol Hill with handpicked scientists and concluded that to fund all promising ideas, NCI needed another $300 million a year. Senators Tom Harkin (D–IA), chair of the Senate appropriations subcommittee that funds the National Institutes of Health (NIH), and Alfonse D’Amato (R–NY) agreed to boost NCI’s then–$133 million budget for breast cancer research by $64 million. They also put another $210 million in the DOD budget, which already had a small women’s health research program, with the understanding that NCI would control how the money was spent.
But Visco’s group changed its mind after meeting with then–NCI Director Samuel Broder, who said “we can’t turn a huge battleship on a dime,” Visco recalls. She says her group had a “whole different experience” at the U.S. Army, where a general agreed the money should go to innovative research and that advocates should have a seat at the table. “We decided we wanted to keep it at the DOD,” Visco says.
To the relief of wary scientists, the Army asked the Institute of Medicine (IOM) for advice on how to spend the money—then expected to last just 2 years. The committee, which included Dickersin and virologist Harold Varmus, a Nobel Prize winner who soon became director of NIH, suggested that most of the money be spent on peer-reviewed basic research.
In a departure, IOM also recommended that the program’s steering committee, known as the Integration Panel, include advocates; the Army later added advocates as voting members of peer-review panels despite qualms from some scientists. The Integration Panel, the Army decided, would also have unusual discretion: Unlike institute councils at NIH, it doesn’t award grants based largely on peer-review scores but takes a “more hands-on” approach, Dickersin says. It can also take programmatic interests into account—for instance, it can reject a proposal with a stellar scientific score if it feels the program has already funded enough grants in that area.
Thanks to the coalition’s lobbying, Congress has funded the DOD Breast Cancer Research Program every year since 1993, although not at the rate of growth of NCI, which now spends about $600 million a year on breast cancer. The DOD program now receives between $120 million and $150 million a year. Nor are the grants easy to get: Success rates average 13% over 20 years, compared with 23% at NCI.
“A lot of people just look at it as another source of money,” Dickersin says. But she and others argue that advocates trained in the peer-review process have pushed the program in a different direction than NCI. They add “a sense of urgency and passion as well as an important perspective on the feasibility and ultimate impact” of a proposal, says Gayle Vaday, a program manager with the DOD program. And because the DOD program has to spend all its money each year, unlike NCI, it can “move on a dime” and quickly launch new mechanisms or respond to new opportunities, says breast cancer researcher Dennis Slamon of the University of California, Los Angeles. In another review in 2004, IOM found “pretty strong consensus that DoD was adding value, not just replicating what NCI would otherwise do,” says research professor of public policy Robert Cook-Deegan of Duke University in Durham, North Carolina, a member of that panel.
Many of the program’s successful projects would have been unlikely to receive funding from NCI, researchers say. Slamon received one early grant to collect tumor tissue samples that firmed up his group’s contention that some women’s breast tumors carry extra copies of a gene coding for a surface protein, HER2, which makes the cancer particularly aggressive. NCI wasn’t interested in funding the tissue bank because it wasn’t hypothesis-driven, Slamon says. He adds that the studies helped persuade Genentech to move ahead with clinical trials of Herceptin, an antibody targeting HER2 that is now standard of care for this tumor type. Cold Spring Harbor Laboratory biochemist Gregory Hannon, a former chair of the Integration Panel, says the program supported his work using RNAi libraries to screen for genes that allow breast tumor cells to survive. The strategy was too “risky” to have a shot at NCI funding, Hannon says.
The program does have some detractors. Biostatistician Donald Berry, of the University of Texas MD Anderson Cancer Center in Houston, says that although he is “a big fan of Fran Visco and the NBCC” he thinks the DOD program would have benefited from input from a broader array of advocacy groups. The advocates on the Integration Panel tend to reflect Visco’s and the coalition’s views, he says.
Others see nothing amiss with the coalition’s impact and Visco’s long tenure on the Integration Panel. Visco’s vote is just one of about 15, and she “embodies the guiding principles behind the program,” Hannon says. “They [NBCC] have a lot of influence because the plain absolute truth is, there would not be this program without them,” Slamon says.
If there is a shadow looming over the DOD breast cancer program, it is that each year there is a chance that Congress will decide to kill it. With many champions having left Congress or planning to soon, including Harkin, Visco and her colleagues are working to cultivate new backers. One factor in their favor is that Congress over the years has expanded the program into a much larger Army peer-reviewed effort targeted for a range of diseases, from prostate cancer to prion disease, giving it broad appeal.
Agents of change
The National Breast Cancer Coalition now wants something more radical. Some 20 years and $3 billion after the coalition’s founding, “there hasn’t been much in the way of real breakthroughs in breast cancer,” Visco says. The incidence in the United States is still rising, and mortality is down only slightly, Visco argues. And there is too little research on prevention, she says. That led to the coalition’s controversial new goal, announced in September 2010: to “end breast cancer by January 1, 2020.” In an editorial on 29 November 2012, Nature called the 2020 goal “misguided” and wrote “[d]iscovery does not answer to deadlines.”
Visco points out that the coalition has since emphasized that the specific goal is to “know how to end breast cancer by 2020.” To do that, NBCC is encouraging research on two problems: how to prevent cancer with a vaccine and how to stop primary tumors from spreading, or metastasizing. These questions came from the advocates, not scientists, Visco says: “I think advocates can have a better idea than scientists because we’re not just thinking about getting published or getting funded. We’re thinking about what’s best for women.”
The coalition is using funding from a foundation to support seed grants for a few projects—chief among them genomics studies looking for antigens on breast cancer cells or signs of a virus that could be used to design a preventive vaccine. Many breast cancer researchers have dismissed preventive vaccines as a long shot. And that’s exactly why the coalition should encourage this research, Visco says. We’re trying “to be disruptive and to change things. So this is our way of bringing back urgency to breast cancer.”