The magazine, MAMM, featured this profile of Breast Cancer Action founder Susan Claymon in a special Women, Cancer, and Community issue, published in July/August,1999. The article was written by Sara Miles. Susan Claymon died in 2000.
Fourteen Years After Metastatic Diagnosis, Activist Susan Claymon Still Blazes the Trail
The art that fills Susan Claymon’s sunny living room in San Francisco includes a bright Monet print, an elegant sketch of a nude and a sculpture—part armor, part corset, part female torso—breathtaking in its delicacy and toughness. “It’s called ‘Warrior Woman,’” says Claymon, with pride. “I look at it now and say, yes, that’s me, I can keep going.”
Susan Claymon, 60, cofounder and board member of the pioneering advocacy group Breast Cancer Action (BCA), has done much more than keep going since she was diagnosed with metastatic breast cancer 14 years ago. Told then she had a poor prognosis, Claymon went to the university medical library near her home in Cincinnati, determined to learn how to survive.
Since that original diagnosis, Claymon has had many recurrences of cancer; for the last few years, she has been under nearly constant treatment, undergoing exhausting radiation and chemotherapy regimens as well as surgery to put pins in her bones where tumors have weakened them. During it all, she’s been busy: Organizing “Art.Rage.Us.,” a groundbreaking exhibit of art and writing by women confronting breast cancer; helping to coordinate the breast cancer advocacy program for Health Care Without Harm, a coalition to aid hospitals in designing environmentally responsible health care practices; working as a peer reviewer for the Department of Defense’s massive breast cancer research program; writing articles; giving presentations; helping draft legislation; chairing the University of California’s Breast Cancer Research Program; and answering her phone 10,000 times a day, more or less. “I left work and went on full-time disability in 1996,” Claymon explains cheerily, “so that helped. It allowed me to have just one full-time job instead of two.”
Petite and graceful, with cropped silver hair and deep eyes, Claymon exudes the determination that has made her a driving force in the rising national breast cancer movement. “The one thing that always characterizes Susan,” says her friend and current BCA head Barbara Brenner, “is that she thinks of others first. If I call her and say ‘Suse, how are you feeling? Can you come to a meeting,’ no matter how she’s doing she always says, ‘Sure.’” Claymon, for her part, says that activism is simply “part of the reason I’m still alive. I’m convinced that the work I’ve done around breast cancer has been a crucial part of my healing.” And Claymon is quick to credit the strengthening impact of the women she met when she moved to San Francisco in 1989, among them the pioneering activist Elenore Pred. Together they were involved in the Cancer Support Community, which developed into BCA—then as now a unique, grass-roots advocacy group. “Their original mission statement—’to serve as a catalyst for the prevention and cure of breast cancer’—would now sound familiar,” Brenner notes. “But the notion that a catalyst was needed, that prevention wasn’t available and that a cure was demanded—nine years ago nobody was talking about any of that.”
In its approach to breast cancer, BCA took a page from the AIDS community, building close friendships with activists in San Francisco who’d insisted on understanding AIDS in a social framework, not as an individual problem. Claymon recalls, “We actually had tutorials with AIDS activists: Do you chain yourself to the fence right away? Do you have discussions first with the [government] agencies? When do you use what kind of private diplomacy or public pressure?”
BCA also worked on empowering women. “Information allows you a sense of control,” Claymon says. “We held study groups, training ourselves to read medical journals, so that along the journey through this disease we picked up knowledge.”
As a result, Claymon says, BCA has gradually won space for breast cancer advocates to be heard in public debates about the disease. “It used to be that nobody talked about their breast cancer,” she says. “You just crawled in the corner and died. When we organized the first trip of women living with breast cancer to meet with the head of the National Cancer Institute in 1991, we were only able to wrangle a 15-minute appointment. We wound up meeting with him for over two hours while he called in all his top scientists to hear us. He was completely amazed by this group of women who’d trekked in, by our tenacity and knowledge.”
Claymon says there’s a long way to go, but she’s encouraged by efforts to allay some of the mistrust between medical professionals and breast cancer advocates. One benefit of such work came in 1993, when BCA helped draft California’s law establishing a breast cancer research program to be funded through a tax on cigarettes. “By law now, there have to be advocates involved,” Claymon says. “That concept’s been copied by the Department of Defense for it own breast cancer research. It’s a terrific approach.”
Claymon sounds even fiercer when she talks about BCA’s ongoing struggle to raise the visibility of environmental issues. “If the medical establishment was truly about the business of fighting breast cancer,” she told one group of doctors in 1991, “it would be investigating workplace and other environmental carcinogens.” Claymon remains angry at “the bass-ackwards process of letting products onto the market and then deciding to see if they’re harmful.” Last year, in an unprecedented move by a breast cancer-focused organization, BCA announced that it would refuse donations from companies that endanger environmental health, contribute to cancer incidence or profit from cancer—including health insurers, cancer treatment centers and chemical, oil, tobacco and pharmaceutical companies. The group returned a $1,000 contribution from biotechnology giant Genentech, creator of the breast cancer drug Herceptin. “If companies really want to help,” Claymon says, “they can put energy and funds instead into pricing drugs affordably, and make their drugs available on a wide compassionate use basis.” (Compassionate use allows drug companies to make drugs in development available to patients for whom all FDA-approved treatments have failed.)
This controversial move left BCA funded only by individual contributions and foundation grants—at a time when many groups were forging partnerships with large corporations. “Some of our supporters said we should take the money anyway, with no strings attached,” Claymon says. “But I felt strongly that we should never allow companies to say they’re helping in the fight against breast cancer while they’re making chemicals that are killing us.”
BCA’s tough policy on donations, Claymon hopes, will not impede her current organizational goal: to “move past the infighting and squabbling” inside the breast cancer community and build powerful coalitions that can work together despite differences. “We need to keep our eyes on the prize,” she says. “We need a true coalition of groups that can be a strong voice for people with breast cancer, that can speak with authority to legislators and scientists, that can build support nationally for treatment funds and access and research.” Currently, Claymon is supporting the launch of such a coalition in California—the California Breast Cancer Alliance.
But Claymon is also trying to find “balance” in her life and to make time for her friends, children, and grandchildren. “I’ve just finished a round of chemo and radiation,” she explains, “so my body is very depleted. Technically I should go on to another chemo, but yesterday I had a big powwow with my oncologist.” She laughs “I told him that what I really need for the next step of my treatment is to go to Greece on this trip I’ve been planning for the last six months. It’s about my spirit. I need to sit on that terrace and look at the Aegean. Then I’ll build up more energy to really get to work.”