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Fran Visco was 39, had a 1-year-old son, and was a busy trial lawyer and partner in a Philadelphia law firm when she was diagnosed with breast cancer in 1987. It rocked her world. She had no family history and knew nothing about the disease. She decided to learn all she could, and the more research she did, she says, the more she felt that breast cancer had reached epidemic proportions -- yet the women's movement, the media, and the public weren't paying attention.
With her background in law, Visco decided working with the government was key to getting things done. So in 1991, after she had recovered from her own treatment, she quit her job and joined a group of women who came together to launch the National Breast Cancer Coalition, a nationwide network of organizations and political activists.
The NBCC is known as a tough, serious, and sometimes controversial organization. Its thousands of member advocates have been a powerful force in shaping local and federal policies that affect government funding, the quality and direction of research, and access to care for people with breast cancer. But after nearly 20 years of efforts to eliminate breast cancer, Visco was frustrated at the lack of meaningful progress. It was time to raise the stakes.
So earlier this year at NBCC's annual conference, Visco walked to the podium of a Washington, D.C., hotel ballroom packed with breast cancer survivors, advocates, doctors, researchers, and journalists. She took a deep breath and declared an audacious goal: to end breast cancer -- not just at some rosy time in the future, but by 2020.
"We need something more powerful than hope. Welcome to the new revolution," she said, as the people in the room jumped to their feet and cheered.
Is Visco an incredible visionary with the resources to make this happen, or a hopeless dreamer? After hearing from some of the top medical researchers in the country who are behind the coalition's bold plan and after talking at length with Visco, LHJ is leaning toward the former. We dare you not to be inspired by her drive and dedication to this ambitious deadline.
LHJ: Haven't we come a long way in the fight against breast cancer in the past 20 years?
FV: We've made advances in awareness, knowledge, and treatment of breast cancer, and there's a lot more money in breast cancer research than there was 20 years ago. But we haven't managed to reduce mortality significantly. In 1991, 119 women died of breast cancer every day in this country. In 2010, 110 died every day. This year it's projected that 230,480 women will be diagnosed with invasive breast cancer, and about 40,000 will die.
LHJ: But aren't women living with cancer much longer?
FV: There has been some progress in extending life for women with metastatic disease. But we're not saving their lives. Unfortunately, the rate of stage IV diagnoses hasn't changed since 1975, and that's shocking.
LHJ: What about finding more cancers earlier -- is that saving lives?
FV: Unfortunately, according to studies, more screening isn't that helpful; the risks and benefits vary at different ages and with different risk factors. That's part of the reason why the government guidelines for mammography changed in 2009. They're still being debated. When and how often to get screened is something women and their doctors have to decide on an individual basis.
Not all breast cancers are the same. Some can be caught early and still be life-threatening. Some cancers grow slowly and never would become life-threatening. For example, most ductal carcinoma in situ [DCIS, or abnormal cells in the milk ducts that haven't spread] will never become cancer. But we can't yet distinguish which are the dangerous ones, so many women get treated even if it doesn't help them and might hurt them. Those women then are added to survival statistics, so you see how that can be misleading.
Also, more than half of the women in this country diagnosed with stage II and stage III breast cancer will develop metastatic disease within five years of their diagnosis. But they may still be alive and considered "survivors" at five years. All the focus on screening has distracted us from focusing on preventing the disease in the first place -- and preventing cancer from spreading. Screening and prevention are not the same thing.
LHJ: Speaking of prevention, it's the main focus of the NBCC breast cancer deadline. You'll be concentrating your efforts on ways to keep the disease from happening in the first place, and to stop existing cancers from spreading. How did the coalition get to these goals?
FV: It took 20 years of really hard work and educating ourselves to understand breast cancer at every level, from the science to public policy. That brought us to the realization that there has been very little focus on preventing the disease or metastasis. In other words, how do we stop women from dying of breast cancer?
LH: One of the most audacious parts of your mission is the Artemis Project, which will attempt to create a vaccine that would protect women from getting breast cancer. How are you going to make this happen?
FV: We've already put together a think tank of great minds who really want to make a difference. These include not just medical researchers but also regulators, social scientists, policy makers, advocates, and even an astrophysicist to help us look at the issues in completely new ways. We had our first meeting to answer this question: Is it possible to develop a preventive breast cancer vaccine? And if so, can we develop a five-year strategic plan to get there?
Initially, four people out of the 15 believed the answer was yes and everyone else was really skeptical. But walking out of that meeting, all 15 said, "I don't know if we can do this, but it does make sense to ask the question now." We've come up with four big issues we need to address, and we have a summit scheduled for October. I'm really interested to see what comes out of that.
LHJ: Where does metastasis research fit into your plan?
FV: Women don't die from their primary tumor; more than 90 percent of breast cancer deaths are from the disease spreading. So we're starting to address preventing metastasis. We're looking at what's called the "microenvironment" around the tumor and what it is about this surrounding area that allows some cancer cells to penetrate and go to the bones, lungs, liver, or brain. We need to stop it, or maybe just slow metastasis way down so it doesn't kill people.
LHJ: You've said that the NBCC doesn't really participate in the pink ribbon campaign or October Breast Cancer Awareness Month activities. Do you think raising awareness is no longer needed?
FV: In 1987, when I was diagnosed, breast cancer wasn't discussed. Now it is discussed. We're aware. That's progress. But it's frustrating because people think that's enough. They mean well -- they really do. Every October it's all about the happy face of breast cancer
I'll never forget when we were trying to get a bill for research on environmental causes of breast cancer enacted into law and we could not get Congress to push this bill to the floor and get it voted on. We had the majority in the Senate, we had a majority in the House, sponsors for the bill, we just couldn't get it done. But in just a week two senators got a law passed to light the St. Louis Arch pink for October, and everybody thought they had done something. They were so proud. I mean, everybody on the Hill will tell you they want to see the end of breast cancer. But instead, it was, "Look what we did." The NBCC delivered pink lightbulbs to Capitol Hill in protest. When a senator's chief of staff took the lightbulb and asked, "What am I supposed to do with this?" I said, "Our point exactly."
LHJ: You were diagnosed with breast cancer when your son, David, was only a year old. Now he's 24. You're a survivor. But are you always kind of looking over your shoulder, worrying about a recurrence?
FV: For every woman who's ever been diagnosed, that fear is always, always there. It's not my own fear that drives me on this mission, though. I'm driven by the fact that so many women still have to face this every day.
LHJ: Was there one "eureka" moment that led you and the NBCC to declare this ambitious deadline?
FV: It was the death of Carolina Hinestrosa, the executive vice president of the NBCC and an extraordinary individual. She was working on this issue every day. How do we lose so many women like her to this disease with all of the dollars that we've put in? We said, We have to create this mission, and we have to set a deadline because we're not going to get there without one. We have to be audacious and bold, we have to push as hard as we can because no one else has ever tried that, and everything else that has been tried hasn't worked. With the right vision, willpower, accountability and leadership, we believe we can end breast cancer.
Take Action Now
If you want to do something really meaningful for breast cancer this October, register with the Love/Avon Army of Women. Once you sign up you'll receive e-mails about current research trials in need of participants. It doesn't matter if you've had breast cancer -- of the more than 350,000 volunteers already registered, only around 20 percent are survivors. The goal is to study women of all types to learn more about why breast cancer develops. "We really have no idea what causes breast cancer. The majority of women diagnosed have no known risk factors, so we're obviously missing something big," says Susan Love, MD, president of the Dr. Susan Love Research Foundation. And the only way to solve the puzzle is to study women, not mice or cells in a petri dish, she adds. Head to armyofwomen.org to register, and help them reach their goal of 1 million participants.
-- Amelia Harnish
Originally published in Ladies' Home Journal, October 2011.