Her Sister's Keeper

by Judith Warner
Photograph: Photo: Dean Kaufman

In the early summer of 1980, Susan Komen, 36 years old and greatly weakened by treatments for late-stage breast cancer, turned to her little sister and said, “Nanny, we can’t let this happen to other people. Promise me when I get better that you will help me end this disease.”

Suzy died soon afterward, leaving behind a husband and two young children. To this day, her bereaved sister, Nancy Brinker, 63, can close her eyes and hear Suzy’s words in her ears as if they’d just been spoken. “My sister had only two and a half years after she was diagnosed,” Brinker says now, opening her eyes and slowly returning to the present day in her busy Palm Beach, Florida, home, where a variety of staffers bustle in the background and a pool sits like an afterthought in the backyard. “And I often think, My God, if she’d only had another 10 years, what a difference that would have made in the lives of her children and in her own life.”

It’s a haunting thought, one that has propelled Brinker for three decades to fight the ignorance, insufficient research and lack of good treatment options that led to her sister’s untimely death. Under Brinker’s leadership, the organization she founded two years after Suzy died—now called Susan G. Komen for the Cure—has grown from a shoestring operation to a global concern with 122 U.S. affiliates and three chapters abroad. Its signature Race for the Cure events, which have made pink ribbons synonymous with breast-cancer fund raising and advocacy, draw 1.5 million people each year.

Komen has raised nearly $1.5 billion for breast-cancer research and prevention since its inception in 1982, making it the second-largest funder of breast—cancer research in the U.S., after the -federal government. In 2009, Komen channeled more than $93 million in grants to local organizations to fund breast health awareness, screening and, in some cases, treatment for underserved, uninsured or underinsured women. It is often described as the largest source of nonprofit funds in the world.

Today, Brinker divides her time among directing Komen’s operations at its new office in Washington, D.C.; making trips back to the home office in Dallas; and, whenever possible, spending time in Florida, where her 89-year-old mother lives and which she considers home. This demanding schedule requires seemingly unflagging energy and determination, but Brinker has both. She rises to the challenge every day, smile ready, handshake strong, wardrobe a study in casual elegance. She is smart and sincere, tall and imposing, strongly opinionated, frank and straightforward. These are wonderful qualities in an advocate and a leader, a woman whom fans call a visionary, but they are not so well suited perhaps to the banalities of everyday life on a sunny island where the main centers of gravity are the golf clubs. “I look at my friends, and they have good lives, but they don’t know what they’re missing: the daily meaning,” she says. “And so they play golf and they go to parties and they’re ‘active.’ I get to save lives. People say to me, ‘Gosh, why do you keep working so hard?’ But to me it’s not work. It’s a passion and a promise to my sister.”

That Brinker’s life has purpose is documented by all the framed photographs on the piano and side tables in her living room: Brinker shaking hands with Ronald Reagan; posing with George W. and Laura Bush; meeting the pope; smiling alongside Barack and Michelle Obama after receiving the Presidential Medal of Freedom. That her life has at times been hard is also visible in her home. Above the mantel, dominating the living room, is a startlingly dark, strikingly provocative painting that mixes oddly with the cheery photos. The painting shows a male figure, all in white, head bowed under a white hat, ascending a white staircase against a backdrop of sheer black. It is not clear whether it is a portrait of emerging hope or of despair.

In recent years Brinker has become increasingly isolated. Her father, Marvin Goodman, whom she adored, died in 2007. Her son, Eric, 34, took over his grandfather’s successful commercial leasing and development firm and now splits his time between Peoria, Illinois (where Nancy and Suzy grew up), and Manhattan. Her ex-husband, Norman Brinker, died last June, ending a long relationship that, despite their divorce in 2000, remained deeply loving to the end. “If you are unusual at all in what you do, prepare to be lonely,” Brinker remembers her father telling her, and for her this has proved true. “So many men I know aren’t nice about what I do,” she says. “Men my age judge me as being intense and unavailable. They say, ‘She has an agenda’ or ‘She’s too intense’ or ‘She’s going to make herself sick doing this.’ What they mean is that she isn’t available to just take care of me.”

Brinker comes across as both gracious and impatient, the kind of person who looks at her watch when conversation slows, who jiggles her foot while talking, whose admirable outlays of energy betray an inner restlessness. “She’s a warrior queen. She’s e-mailing at 3, 4 in the morning every day—a person with amazing energy to get this work done,” says Elizabeth Thompson, senior vice president for medical and scientific affairs at Komen. “She’s relentless,” says Susan Carter Johns, Komen’s strategic-relationships vice president. “And she expects everyone around her to work that hard, too.”

Back in Peoria, Brinker’s energy and drive delighted—and sometimes overwhelmed—her parents. “Her dad, Marv, once said to me, ‘Suzy was easy. Nancy was smarter than me and always was a challenge. She was always asking questions,’ ” recalls Margaret Valentine, who as Norman Brinker’s personal assistant of 42 years grew close to the whole family. “Nancy just came on like a bullet. He liked that about her, but there weren’t many quiet Sunday afternoons.”

Nor was the dinner table quiet. Brinker’s father was an outspoken Republican who advocated letting businesses flourish without government or union intrusion. He transmitted his views to Nancy over family meals at which he hotly debated her mother, Eleanor, a life-long Democrat. “In the end, Dad won,” Brinker now comments dryly.

Brinker was the first in her family to finish college, at the University of Illinois. Although her father envisioned her having a career in business or law, she didn’t go on for a graduate degree. “I didn’t feel I could survive in school,” she says with regret that, 40-plus years later, still sounds fresh. She had, she explains, an undiagnosed learning disability that required her to work twice as hard to keep her head above water and made standardized-test taking all but impossible. “I felt the jig was up,” she says. “I must have had the lowest SAT scores in the history of the state of Illinois. I felt if I took the LSAT, I would fail. They would look at me and say, ‘Are you kidding?’ ”

Nancy moved to Dallas right out of college, lured by a beloved aunt and uncle, and was quickly hooked by the state’s cowboy culture and wide-open spaces. Texas gave her room to roam. Unlike Suzy, a homecoming queen and model who left college after two years to marry and start a family, Brinker was a product of the late 1960s who questioned authority and planned to become a “career woman,” in the parlance of the time. “Suzy was more introspective, more delicate,” recalls Linda Washkuhn, Suzy’s best friend, who was with her when she died and who brought the first regional Race for the Cure to Peoria in 1986. “Nancy would march in where Suzy might dip her toe. Nancy was just a little more outgoing, bolder, ‘don’t let anything get in my way.’ ”

New in town, Brinker joined an executive training program at Neiman Marcus, later worked in public relations and briefly hosted a radio show. She married, had Eric, got divorced and then, still reeling from Suzy’s death, met Norman, one of the rare human beings whose energy and drive seemed to match hers. Almost 16 years her elder, Norman had traveled far from his humble beginnings, becoming a member of the U.S. Olympic equestrian team and later making a sizable fortune in the restaurant business.

Norman saw Nancy through her own bout with breast cancer in 1984. The treatment—four rounds of chemotherapy and a mastectomy—ended her chances of having any more children. Even so, she says, “I always consider myself extremely lucky, extremely blessed.” Then, in 1993, Norman suffered a near fatal polo accident and serious brain trauma. He eventually recovered, but the couple divorced seven years later. Brinker still cannot speak about him without visible pain. “This wasn’t a divorce. It was a death,” she says. “He felt he was holding me back. And he wasn’t. I would have stayed with him. And I think that because somewhere deep inside he knew that, he made it almost impossible for me to stay.”

Valentine, who watched Nancy painstakingly nurse her husband back to health after his accident, is still moved to tears when she thinks about the moments of hope and despair they shared during his long weeks in a coma and his months of recovery. But she prefers to remember happier times, such as when Norman met Nancy in November 1980 and instantly fell in love. “Their first date was over Thanksgiving, and they were married on Valentine’s Day. It was that immediate and that deep,” she recalls. “Nancy is smart as a whip, and he is too, and I think he enjoyed her intellect as well as her humor and that she was grounded. They were a great match.”

With Norman’s encouragement and early financial backing, Nancy threw herself into building up the Komen organization. Her first event was an all-women’s polo match in Dallas. Fundraising lunches and the now-signature walks followed. She gave a public face to a very private disease, telling the story of her promise to Suzy. George and Laura Bush were enthusiastic early supporters; Laura, as Brinker’s “invitation chair,” addressed envelopes for various lunches and dinners during the 1980s. A friendship developed, and the Brinkers became major Bush donors and fund raisers in Texas.

As head of Komen, Brinker first set out to change the public’s attitudes toward breast cancer. Thirty years ago, the disease was still so stigmatized that friends in Peoria, seeing Suzy at the supermarket, would duck down separate aisles to avoid her because they feared that her illness was contagious. On one occasion, a bra manufacturer in New York had Brinker escorted from the building when she attempted to persuade the company’s board to put a breast cancer-awareness hangtag on their lingerie. To this day, when in New York, she points to the corner in the Garment District where she stood and cried.

Brinker worked hard to charm donors and raise the profile of the organization. Building on the burgeoning fitness craze in America, the races grew slowly but steadily. Then, in the early 1990s, they exploded in size and popularity, a development Susan Carter Johns attributes to a new idea: Komen began to recognize breast-cancer survivors at the events with pink T-shirts, visors or ribbons indicating how many years had passed since their initial diagnosis. “This inspired incredible hope,” Johns says. “You’d see a woman going through chemotherapy next to a woman with 21 ribbons on her visor. This sea of pink—it gave a very visual picture of how many women were affected by breast cancer. That’s when it really caught fire.” (The genesis of those pink ribbons remains a point of confusion. The Estée Lauder Web site states that Evelyn Lauder and Alexandra Penney, then editor of Self magazine, “created the Pink Ribbon as a symbol of breast health” back in 1992. The Komen organization counters that the first Race for the Cure logo—an abstract female runner outlined with a pink ribbon—dates to the mid-1980s, and says pink ribbons were first distributed by Komen at the New York City Race for the Cure in 1991.)

Over the course of the 1980s and early 1990s, Brinker forged a number of corporate partnerships, making Susan G. Komen the first advocacy organization to essentially market breast cancer as a cause to consumers. During its enormous expansion in the 1990s, Komen added professional staff who took over day-to-day operations. That enabled Brinker to transition into an even more prominent role, testifying before Congress, serving on government panels and holding a seat on the foundation’s board of directors.

In 2001 she was required by law to relinquish that seat after accepting an invitation from her old friend George Bush, then President, to serve as U.S. ambassador to Hungary. Brinker remained a public face of Komen, however, and planned to use her post to promote women’s health in Eastern Europe. Instead, she found herself sidetracked into a new kind of cause marketing: promoting U.S. interests in the run-up to the Iraq war. As her first highly visible official duty, the State Department asked her to give a talk denouncing the rise of hate speech in Hungarian politics, which didn’t make her job any easier. “My relations with the government were very difficult,” she recalls of those early months. Her time abroad was, as she puts it, “lonely, and it was fabulous, and it taught me how strong I’d have to be moving forward.” It was in Hungary that she acquired László Fehér’s 2001 Self-Portrait with Staircase, the painting that now hangs in her Florida living room. (Her collection of Hungarian art has been shown a number of times in museums and galleries in the U.S.)

She returned to Dallas and her role at Komen in 2003, continuing until 2007, when President Bush named her chief of protocol at the State Department. Now she was on the other side of the diplomatic fence, welcoming ambassadors to her country, and she set out to make them feel more connected to the United States. The ambassadors were generally charmed. “Nancy puts people at ease,” says Charity Wallace, who currently works as chief of staff for Laura Bush and who formerly served as Brinker’s deputy chief of protocol. “She’s very compassionate, generous, accessible, whether with the pope, a head of state or people cleaning the offices.”

Then in December 2009, Brinker took the reins as CEO at Komen. To some, it was a surprising move—for the first time, Brinker is an employee of the organization, accountable to its board of directors—but the decision corresponds to the new sense of urgency she feels about her mission. Komen’s fund raising has taken a hit recently; revenues are down compared with those of the past five years.

Brinker’s new focus involves bringing the Race for the Cure to new nations, partnering with local organizations and serving as the World Health Organization’s Goodwill Ambassador for Cancer Control. She is writing an autobiography, to be released in September. And she is participating in one-on-one efforts to support vulnerable women, visiting, for example, clinics and hospices in India. (At one she met a young woman whose cancer was so advanced that it was visible through her chest and whose overwhelming worry was that she was putting her husband at risk of contagion.) Famously, in October 2009 she brought world attention to her advocacy work with the Egyptian government by lighting the Giza pyramids pink the night before the country’s first-ever Race for the Cure.

Of course, she continues to push hard on problems in the United States, where, she says, there are huge discrepancies in the quality of care received by women at different ends of the socioeconomic spectrum. Despite real advances in the treatment of breast cancer—“When Suzy was diagnosed,” she says, “the five-year survival rate for cancer before it spread from the breast was 74 percent; today that number is 98 percent”—the more things change, the more intolerable it is for her to see that for some women they remain depressingly the same. A few years ago, the Komen home organization in Dallas began to survey women in communities that had the highest mortality rates from breast cancer, and from those results it has initiated programs aimed at delivering targeted services where needs are greatest. In Appalachia, for example, Komen pays for a bus to take women to facilities where they can have mammograms. In Washington, D.C., Komen funded a project aimed at getting faster care for low-income and minority women.

Brinker’s sense of mission has also been inflamed by recommendations issued last fall by an influential panel of government-appointed experts who, breaking with years of accepted medical practice, changed their position advocating regular mammograms for women over 40, instead recommending that routine screening occur only every two years, beginning at 50. The statement—by the U.S. Preventive Services Task Force, a group that carries great weight with doctors, health insurers and legislators—has led Komen to redouble its political advocacy efforts and fight lawmakers in states that may use the guidelines as justification for budget cuts in breast cancer–screening services. “All these fragile people you were able to educate and get them focused on their bodies and show them there’s something they can do . . . and then you get something like that clumsy announcement about changing screening procedures,” Brinker laments. “To me, it’s a crime what’s going on here.”

Brinker’s continued support for annual screening mammograms starting at 40 has put her at odds with a number of other leaders in the breast-cancer advocacy movement, who over the years have arrived at the position that annual mammograms for women in their forties expose them to unnecessary radiation and unneeded treatments. “This is our opportunity to look beyond emotions,” Fran Visco, president of the National Breast Cancer Coalition, said of the new recommendations in November 2009, telling the New York Times that the “independent” and “objective” panel was “the people we should be listening to when it comes to public health messages.”

Visco, like Susan Love, MD, another prominent advocate who supports the new guidelines, declined to be interviewed for this article. In fact, people often hesitate to criticize Komen on the record, in part because the organization’s enormous wealth makes so many programs possible. Privately, however, some say Komen’s unwavering focus on screening has come at the expense of efforts to better investigate environmental causes or more generously fund treatment for poor women. Some charge, moreover, that Komen accepts too much money from companies that manufacture mammogram machines, make the powerful and sometimes dangerous drugs used in breast-cancer treatment or otherwise have a vested interest in finding and treating the disease, not preventing it. (In response, a Komen spokeswoman says, “In a nutshell, no. Our policies limit pharmaceutical funding, and it can’t be used to fund specific scientific research. We also do not endorse any medical product or treatment sold by a corporate partner of the organization.”)

There’s one charge that Brinker’s critics have been public about: that by blanketing the country, and now the world, with pink, Komen is putting a mask of ladylike stoicism and compulsory good cheer over the suffering and the politics that affect women’s access to treatment. On these grounds the feminist writer and breast-cancer survivor Barbara Ehrenreich has dubbed pink-minded groups such as Komen the “ladies’ auxiliary to the -cancer-industrial complex.”

“The question is, What face do you put on this disease?” says Barbara Brenner, executive director of the advocacy group Breast Cancer Action, which distributes buttons that read cancer sucks. “Komen’s response is, We’re fine. Just put a pink face on it, and we’ll all be great. Ours is, The system isn’t working. Let’s change it.”

The “too much pink” criticisms rankle Brinker. It isn’t so much that they’re personal—which they are, a repudiation of her elegant self-presentation and a swipe at the small-government, pro-business Republicanism she learned from her father. It’s more that Brinker passionately believes in the importance of both her message and the medium through which it’s delivered. Talking “pink,” or domesticating breast cancer, is the only way, she thinks, to start conversations among people who would rather push the subject under the rug. For Brinker, keeping her spirits up is part of the job, and as with any difficult task she’s faced in her life, she succeeds by working at it very hard. “If we weren’t positive,” she says, “I would probably long ago have said, ‘There’s nothing I can do,’ and rolled over in desolation. You can’t do that. You’ve got to keep going.”

It’s that constant battle between light and dark—that tension between hope and desolation captured in the staircase painting in Palm Beach—that describes the mood of Brinker’s life right now as she braces for a new fund-raising effort and strives to maintain some sense of home in a life that’s increasingly peripatetic. On balance, however, she says her personal sacrifices for the cause have been more than worth it. “In many ways I’ve never been this happy,” she says. “I’ve learned to be alone. I enjoy what I do. My work fuels me. All this—even sometimes the sadness—fuels me. One thing I’ve learned is, if I ever have a day where I feel sad, I immediately engage in my work, and within 15 minutes I feel great again.” You can dispute the benefits of mammography. You can disagree with Brinker’s politics, question the motives of her corporate sponsors. But what you can’t do is paint Brinker with the brush of mindless pink thinking. The woman behind the ribbons has earned her pink power the hard way. She works at it every day of her life.

Judith Warner’s most recent book is
We’ve Got Issues: Children and Parents in the Age of Medication.

Originally published in the June 2010 issue of More.

First Published Mon, 2010-04-26 14:11

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