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Silent Spring Institute takes inspiration from the women and men who ask for—and tirelessly pursue—answers to the difficult questions that must be resolved in order to stop the breast cancer epidemic. These advocates’ dedication and energy are a source of continuing inspiration. Through these profiles we hope to honor them, to highlight their contributions, and to provide you with inspiration to become involved.
|Vernal Branch||Cheryl Osimo|
|Ellen Calmas||Ellen Parker|
|Jane Chase||Amy Present|
|Joyce Clements||Joan Sheehan|
|Nancy Crumpacker, MD||Bonnie Spanier, PhD|
It took less than three weeks for the pea-sized lump in one of Vernal Branch’s breasts to grow into a tumor the size of a golf ball. Her immediate response was to learn everything she could about treatment options—and to take action. In the dozen years since her diagnosis and the mastectomy that followed soon after, Branch has taken that same thoughtful yet decisive approach to her role as an impassioned advocate for research into the environmental causes of breast cancer.
“I began by getting involved with several breast cancer organizations,” Branch says. “I eventually gained the confidence to take part in shaping public policy. And I’ve since been able to create educational outreach programs that affect the African American community.”
Branch now serves as a minority recruitment consultant for the Sister Study, a national research program that follows the sisters of women with breast cancer to help tease out the different roles that genes and the environment may play in affecting a woman’s chances of developing the disease. More recently, Branch has been sharing her hard-won expertise as one of the founding members of Silent Spring Institute’s National Advisory Council.
“I’m working for my two-year-old granddaughter,” Branch says. “I don’t want her generation to be burdened with the increasing rates of breast cancer that my generation has faced. I want to help prevent the disease.”
“When I was diagnosed with breast cancer,” says Ellen Calmas, “I began to question why so many women, including healthy women like me, face this life-threatening disease. I’m fortunate; I had access to the best doctors and I’m doing fine. But what happens to our daughters is in our hands.”
Calmas has since been committed to building a growing circle of informed supporters to help expand Silent Spring Institute’s research and impact. She established the Friends of Silent Spring Institute to provide resources and to educate the public about the Institute’s work and the need to expand the national research agenda to include a strong focus on breast cancer prevention.
In May 2007, Calmas was honored with the Institute’s Rachel Carson Advocacy Award for her unwavering commitment to expand the Institute’s outreach and educational capabilities. “Nobody knows how much exposure to chemicals is too much,” she says. “We have to find answers for the sake of generations to come.”
Since 1957, when Patti Page first sang about the sand dunes and salty air of old Cape Cod, Jane Chase has lived at the same address on the elbow of the Cape. Her white clapboard house overlooks a marsh, where great blue herons feed, sometimes year-round. From her deck, she can hear the chirping of ospreys as she watches waves lapping against the nearby shores of Nantucket Sound.
Despite its tranquility, Chase fears her beloved landscape may not be as idyllic as it seems. In 1993, she learned that women on Cape Cod have been disproportionately affected by breast cancer, which led her to wonder about her own diagnosis, two years earlier. Like many other Cape women with the disease, she had no family history of breast cancer. Could she have been exposed to pesticides through spraying for mosquitoes on the marsh decades ago, or through another, as yet unidentified environmental source?
In 1994, Chase’s questions led her to begin volunteering with Silent Spring Institute, which had just launched the Cape Cod Breast Cancer and Environment Study. “The Institute’s scientists are working with those of us in the community to investigate possible relationships between environmental pollution and breast cancer,” Chase says. “Our goal is to identify preventable causes of the disease not just for Cape residents, but for everyone.”
A turning point came for Joyce Clements while she was working in Massachusetts as an archaeological consultant. In the historical records and contemporary academic texts she reviewed, women’s work and lives were often invisible. She decided to return to graduate school to learn how and why women had become invisible to history and to work to bring women’s contributions back to center stage. Her coursework in women’s studies provided her with a theoretical frame for understanding how women have been marginalized. Her studies also helped her develop tools for creating positive change in women’s lives.
Her work in graduate school, coupled with her respect for Rachel Carson, led to her interest in the connections between breast cancer and the environment. She became concerned that it is often disempowered individuals who are exposed to the environmental pollutants that may lead to breast cancer. “I realized,” she says, “that there’s no money for a strong lobby for this issue.”
In 2004, Dr. Clements became the president of the Maine Breast Cancer Coalition. In this position she has been able to combine her interests in social justice, the environment, and breast cancer. One of her goals is to increase awareness of how the environment can affect health. Her research training makes her ideally suited to help translate scientific findings into specific changes people can implement in their daily lives. One project she is currently developing is “a module within health studies in the school that teaches young women healthy behavior and works against the very unhealthy norms that women now face.”
She is targeting grade school and high school students because she’s concerned, she says, that women and girls are “overloading their bodies with chemicals.” She hopes to “educate them to take preventative measures to not overdo chemicals in food and in their bodies so that later in life their bodies don’t become burdened with toxins.”
When Oregon decided to create its first comprehensive cancer plan in 2004, Dr. Nancy Crumpacker and the other leaders at Rachel’s Friends Breast Cancer Coalition saw an opportunity to influence policy and reach a wider audience with their environmental message.
Since then, the organization has successfully incorporated into the state’s plan a list of common cancers, along with a list of the chemicals associated with them. “By being part of this planning and putting together this cancer program,” Dr. Crumpacker says, “we’ve notched up citizens’ awareness about toxins that affect cancer incidence.”
Dr. Crumpacker, who now chairs the organization’s Environmental Risk Factors workgroup, foresees that the organization’s involvement in drafting the cancer plan will facilitate its work with other organizations, its ability to develop and disseminate education tools, and its capacity for changing public policy.
During her 21 years as an oncologist, Dr. Crumpacker wondered at the rising incidence of many cancers. With less than 10 percent of all cancers attributed to genetic causes, she reasoned, the increase can’t be genetically based. “We are doing something different now,” she says. “The environment just makes a lot of sense.” When she retired in 1999, she joined Rachel’s Friends Board of Directors.
Dr. Crumpacker continues to highlight the need for changes in public policy, at corporate levels, and by individuals. “I’d like to see our public policy, our corporations, and our entire mentality changing,” she says. “Greed is a tough human trait to counter. That’s what it all comes down to. If corporations can make more money they’ll do it the cheapest way possible, which is usually the most toxic.”
Deb Forter never met her maternal grandmother, who died of breast cancer when Forter’s mother was only 11 months old. Yet she shares her grandmother’s passion for raising awareness of the connections between environment and health. In the early 1900s, Forter’s grandmother documented the poor working conditions in the mills of Lowell, Massachusetts. Today, Forter is raising awareness of how exposures in our everyday lives—from cleaning supplies to cosmetics, pesticides, and plastics—affect our health.
Almost a century after newspapers published her grandmother’s articles, Forter returned to school as an adult to study environmental economics and health. The breast cancer diagnosis of a close friend at the time she was choosing her thesis inspired Forter’s research into environmental links to breast cancer. As part of her thesis work in 1993 and 1994, she tracked the creation of advocacy-oriented breast cancer organizations, including the Massachusetts Breast Cancer Coalition, or MBCC.
Fresh out of school, passionate about her research, and new to the area, Forter became a volunteer with MBCC in 1994. She found the organization’s interests coinciding closely with her own. That year, MBCC hosted its first environmental conference and founded Silent Spring Institute as an independent research organization to study the links between the environment and women’s health, especially breast cancer. By 2000, Forter had become the organization’s executive director. During her tenure, she felt pride in the organization’s progress in raising awareness of environmental links to breast cancer through its association with Silent Spring Institute, its alliances with other organizations, and its ability to speak out about the environment.
Since resigning from her position with MBCC at the end of 2005, Forter has continued her work in environmental health. “I want people to feel empowered to make changes,” she says, “instead of feeling numb, like they can’t do anything.”
Soon after buying her first home on Cape Cod in 1978, Cheryl Osimo noticed a green truck pulling up to a neighboring lot. A man stepped out, his face obscured behind a thick plastic helmet and his body encased in heavy coveralls. As he trudged through the woods to the small pond behind Osimo’s house, he reminded her of an astronaut walking on the moon. Through the gaps in the trees she could see him spraying for mosquitoes—a ritual, she later learned, that occurred several times a year.
“To this day,” Osimo says, “I’m dismayed about my own ignorance. Why didn’t I think about how his spraying would affect us downwind? Why didn’t I realize that if he wore all that protective gear, I should be worried about my children playing in the sandbox? And why wasn’t I concerned about those chemicals drifting into our home?”
Just over a decade later, when Osimo was diagnosed with breast cancer at the age of 40, she struggled to understand why she had developed the disease. After all, she had no family history and no known risk factors.
“People placed such an emphasis on looking good to feel good,” she says. “Someone even called to help me with my eyebrows because I’d lost them to chemo. I felt frustrated, because I wasn’t hearing anything about what had caused my cancer or how I could prevent my children from getting sick. I never want them to go through chemo and radiation; because of my cancer, I feel like they already have.”
Two years after her diagnosis Osimo learned that nine of fifteen Cape Cod towns had some of the highest breast cancer rates in the commonwealth. Already a member of the Massachusetts Breast Cancer Coalition, she helped mobilize a response—and ended up helping to found Silent Spring Institute to look into possible environmental links to breast cancer. Since then, she has served as Silent Spring’s Cape Cod coordinator, becoming a pivotal figure in the Institute’s relationship with the community.
It was in Ellen Parker’s living room that Silent Spring Institute was formed. Members of the Massachusetts Breast Cancer Coalition, alarmed by reports of elevated rates of breast on Cape Cod, had gathered there in search of answers. They decided to create a laboratory of their own to investigate the causes. They founded Silent Spring Institute to study the links between the environment and women’s health, beginning with breast cancer. Their background was social activism, not science—and that gave them an advantage.
“We didn’t want science as usual,” says Ellen Parker, chair of Silent Spring’s Board of Directors. “We didn’t want to fund scientists who would disappear and then come back with a report ten years later. And we wanted the community—especially women with breast cancer—to participate in the process.”
Parker and the other founders realized the Institute would be an innovative model. “It was a new experience for the scientists to work so closely with activists and the people affected by the illness they were studying,” Parker says. “At first some scientists worried that the activists’ involvement would compromise the science, but that turned out not to be true.”
As an independent scientific institute, Silent Spring has avoided the turf wars of academic institutions, Parker adds. “We’ve been able to bring together people who had been researching the same angles but had never collaborated. Even years later, bench scientists are coming up to us and saying, ‘Do you understand what you’ve accomplished? We had never even talked with each other before.’”
Getting people to talk with another is a skill Parker has been honing for decades. A social worker in private practice in Newton, Massachusetts, she specializes in psychotherapy with individuals and couples. She is a former president of the Massachusetts Breast Cancer Coalition and a founding board member of both the coalition and Silent Spring Institute. She has also served as director of social work services for Tufts–New England Medical Center.
Parker has received the Eleanor Clark Award for Innovative Programs in Patient Care from the American Hospital Association and the National Association of Social Workers Social Worker of the Year Award. In 2008, the Massachusetts Commission on the Status of Women, or MCSW, named her Unsung Heroine. “Our Unsung Heroines,” stated Linda Brantley, executive director of MCSW, “are the women who quietly, without fanfare or recognition and usually behind the scenes, use their time, talent, spirit and enthusiasm to enrich the lives of others.”
In the early 1970s, Amy Present shared a house with friends in Newton, Massachusetts. Of the seven women who lived there, four were later diagnosed with cancer—including Present, who was treated for breast cancer in 1984. The other three women died. Two decades later, Present learned that she had been living in a neighborhood whose breast cancer incidence is 37 percent higher than the state average.
Present’s experience with breast cancer inspired her to become involved in promoting breast cancer awareness and in advocating for research. She joined forces with other women with breast cancer and their families and friends to demand answers on behalf of their own communities and women everywhere. Why are breast cancer rates higher in such communities as Newton? And why are breast cancer rates five times higher in some countries, including the United States, than in the developing world?
In 1994, Present helped to establish Silent Spring Institute. Within four years of the Institute’s founding, its researchers had completed the Newton Breast Cancer Study, which tackled the question of why a higher socioeconomic status is associated with a higher breast cancer risk. The researchers found that women with higher socioeconomic status tended to apply more pesticides, dry clean their clothes more often, and use more personal care products than women of lower socioeconomic status. The study’s findings made news from Boston to Los Angeles and as far away as Turkey.
As a member of the Institute’s Board of Directors, Present continues to advocate for more research into environmental links to breast cancer. “People have called me and asked, ‘Should I move out of Newton?’” she says. “I answer, ‘Stay where you are and get involved.’”
After her breast cancer diagnosis in 1986, Joan Sheehan was grateful to receive a visitor from the American Cancer Society. “At the time I knew no one with breast cancer,” she says. “Not one person.” Realizing how important it was to her to speak with someone who had had breast cancer, in 1987 Sheehan began volunteering. A decade later she joined Drs. Bonnie Spanier and Patricia Brown in founding Capital Region Action Against Breast Cancer! (CRAAB!), a nonprofit, community-based organization focused on making the eradication of breast cancer a priority through education and advocacy. The three women, along with others at CRAAB! and leaders of New York groups, also spearheaded development of the New York State Breast Cancer Support and Education Network (NYSBCSEN). The NYSBCSEN has two dozen member organizations located in communities throughout New York, from Buffalo to Long Island. The NYSBCSEN serves a variety of functions, from hosting educational forums to advocating for the adoption of the precautionary principle in guiding public policy and planning in New York State.
Sheehan believes there is a pressing need to focus on environmental health. As a retired elementary school teacher, she is especially sensitive to how the environment affects children and identifies biomonitoring as an important area of research. She hopes that with advances in technology, we may be able to identify chemicals that cause breast cancer.
CRAAB! would like to make the environment its priority, but Sheehan has found it’s difficult to find grant support for this work. And although she is concerned that the major breast cancer organizations are not working on the environment enough, she believes people working at the grassroots can educate the public and urge their state legislators to support research into environmental health. She notes that organizations such as CRAAB! are limited in terms of the direct lobbying they can do, so individuals can make a difference by being involved and vocal.
Bonnie Spanier never expected to become a breast cancer activist. “I didn’t come out of an activist family or background,” she says. “I believed in science. I was educated to believe science was good and would make everyone healthy.” Yet in her scientific work she saw the roles that racism, sexism, and class bias played. Increasingly, she felt a responsibility to share what she knew, to raise awareness, and to motivate people to change.
Then, in 1993, Dr. Spanier’s good friend Dr. Patricia Brown was diagnosed with breast cancer. After reviewing the scientific literature to learn more about the available treatments, Dr. Brown was appalled to see how little evidence there was to support these therapies. She involved Dr. Spanier in forming Capital Region Action Against Breast Cancer! (CRAAB!), a nonprofit, community-based organization focused on making the eradication of breast cancer a priority through education and advocacy. The organization’s initial meetings focused on reviewing the scientific literature on breast cancer, empowering women to be active in their own care, and discussing ways to cope with the disease.
Understanding cause and effect in the relationship between environment and health is often murky, notes Dr. Spanier. “At this point in our understanding, “ she says, “scientific information that’s accurate and understands its limitations is very valuable for trying to figure out how to create solutions.” She points to Silent Spring Institute’s Household Exposure Study as the kind of scientific work that needs to be done.
“The environmental degradation we see today,” she says, “is caused by a long history of people not thinking about the impact of what they’re doing. It’s greed at its most awful. I just want to turn that upside down. Of course people want to be healthy. There’s no reason why companies can’t make decent profits without destroying the environment.”
Dr. Spanier is concerned that not enough attention is given to understanding the political and economic forces that are the root causes of environmental degradation. If we fail to understand and address those causes, she believes, true and lasting change will not be possible.
Dr. Spanier is now writing a book about breast cancer advocacy and the use of scientific evidence. The book explores how breast cancer advocates use scientific evidence about breast cancer diagnosis and treatments and how their politics affect that relationship to scientific evidence.