March 1, 2011

The Knitted Web

Nancy Brinker still longs for the cure to breast cancer, but after 30 years of extraordinary effort, accepts that it probably won't happen in her lifetime.

When President Barack Obama announced the 2009 winners of the Presidential Medal of Freedom, the nation's highest civilian honor, he said that the 16 recipients were men and women of “tremendous accomplishments” who shared one trait: “Each has been an agent of change. Each saw an imperfect world and set about improving it, often overcoming obstacles along the way.”

For recipient Nancy Goodman Brinker, founder and CEO of the world's largest private breast cancer organization, the award represented both the highs and lows of her three-decade struggle to find a cure for the disease. The highs have been significant: Her organization, Susan G. Komen for the Cure, has in 30 years productively spent about $1.9 billion building awareness of breast cancer, funding critically important research and helping to save and extend the lives of hundreds of thousands of women and men who have had the disease. Komen's pink ribbon symbol has become ubiquitous and synonymous with the ongoing struggle with breast cancer.

The low: Despite the unrelenting work of Brinker, her highly professional management team, thousands of researchers funded by Komen, affiliates and tens of thousands of volunteers, there remains no cure for breast cancer. Great progress has been made in early detection, beneficial and sophisticated treatments, and community organization to fight the disease. But notwithstanding her early and somewhat naïve expectation that a cure might be quickly found, Brinker now acknowledges that “better” approaches to detecting and treating breast cancer will simply have to be good enough, for now.

“We are seeing people living five, eight, 10 years longer today than I saw them living 20 years ago with the same breast cancers,” says Brinker, who herself was treated for breast cancer in 1985. “We are even seeing some amazing life spans among people with very late-stage breast cancer. That's not perfect, though. It's not where we want to be. But most of the advances that we're going to see will be incremental. That's what it's coming to.”

Brinker's story is not a business story in the classic sense. But it is a tale of tremendous tenacity and learning, and of a grassroots struggle to defeat an implacable foe that grew from one person, Brinker, and one promise, a commitment to her dying sister to do everything she could to defeat breast cancer. As such, it becomes the story of an organizational leader with clear goals, who employs classic techniques of marketing, branding and awareness to marshal forces for meaningful change. Any business person who ignores her story misses an important chance to learn how to capture the imagination of the marketplace. In this case, the nonprofit marketplace for doing good.

“I get to help save peoples' lives,” says Brinker. “That is so powerful. I get to live in the world and occupy a very spiritual place, and I get to do that every day. My life is full of meaning, every single day.”

Brinker's life would have been very full even without a titanic struggle against a dread disease. Among many other things, she served as the U.S. ambassador to Hungary from 2001 to 2003, and Chief of Protocol of the United States from 2007 to the end of the George Bush presidency in 2009. Her consuming passion, though, has been obliteration of breast cancer. She served on the National Cancer Advisory board in 1986; the President's Cancer Panel in 1990 and the National Steering Committee for the National Dialogue on Cancer in 2000. As founder of Susan G. Komen for the Cure, she was essentially a volunteer until she was named CEO of the group in 2009.

Breast cancer is the second largest cause of cancer deaths among women in the United States, after lung cancer. Nearly 210,000 women are diagnosed with the disease each year, and nearly 2,000 men are as well. About 40,000 Americans with the disease die annually. Globally, about 1.4 million are diagnosed with breast cancer annually, and more than 450,000 die from it each year.

The incidence of the disease is rising, up 30% in the last 25 years, Komen for the Cure says. The reasons aren't known, but it may be due to “changes in reproductive patterns” and increased screening, the group says.

Brinker launched Komen for the Cure in 1982 in Dallas, Texas. The group's cancer research grants began in 1983, when one grant for $28,000 was made. Since then, Komen has awarded about 1,800 research grants in the United States and Canada. The group currently manages about 535 research grants totaling about $270 million in North America and in 18 countries around the world.

As important as raising money has been raising awareness of breast cancer. The Susan G. Komen Race for the Cure, a 5K run and fitness walk, is a primary fundraiser. The first was held in Dallas in 1983 and attracted 800 participants. Last year, Komen affiliates held 149 races, with 1.6 million participants on five continents.

Komen for the Cure's signature pink ribbon emblem, used since 1992, has become the symbol for breast cancer awareness. Through corporate sponsorships, ribbons and things pink have sprouted on yogurt containers, automotive showrooms, airline terminals, banks and National Football League fields (where, for example, the Chicago Bears sold “Real Bears Wear Pink” T-shirts, numerous teams passed out pink ribbons, and others wear pink-festooned uniforms). Pink has become pervasive.

Does it make a difference? Komen for the Cure says of course it does. It cites as its research victories: the discovery of the breast cancer susceptibility gene, BRCA1; the first use of magnetic resonance imaging to identify cancers that aren't detected by mammograms; research that led to development of drugs that stop tumors from making blood vessels; evidence that breast tumors are hormone-driven, leading to renewed support for Tamoxifen, a drug that blocks the effects of estrogen and is used to treat breast cancer; the discovery of aromatase inhibitors for hormone treatments in post menopausal women, and more.

Because of heightened awareness of breast cancer, Komen for the Cure says, nearly 75% of women older than 40 receive regular mammograms, compared with fewer than 30% who received any sort of clinical exam in 1982. The five-year survival rate for non-metastasized breast cancer has risen to 98% from 74% in 1982. Federal funding for breast cancer research now totals $900 million annually, compared with $30 million 30 years ago. Some 2.5 million American women are now breast cancer survivors, Komen says.

“Ambassador Nancy Brinker is a pioneer and visionary,” says Danny R. Welch, PhD, a cell biology and pharmacology professor who directs the University of Alabama at Birmingham's Cancer Biology Graduate Program. Welch is also a member of Komen's Scientific Advisory Council, which works to channel research information to cancer centers, physicians and, ultimately, patients. “There is a lot of research that wouldn't be funded were it not for the efforts of Susan G. Komen for the Cure,” says Welch. “Because of the research support, significant progress toward preventing and treating breast cancer has been made.”

Says Dr. H. Kim Lyerly, the George Barth Geller Professor of Cancer Research at Duke University's Comprehensive Care Center: “Ambassador Brinker and Komen for the Cure represent one of the most remarkable stories of modern patient advocacy for cancer. [Brinker] was the first to galvanize non-cancer specific organizations, associations and enterprises to support efforts directed toward a specific cancer need. Her efforts to support the need for access, care, support and screening, as well as research, was one of the first comprehensive strategies to address a health problem. I also think [Komen for the Cure's] efforts to recognize and deliver solutions to the global burden of cancer are inspirational.”

Forward spoke with Brinker in New York City.

Has your personal experience with cancer influenced how you approach your work?

I have felt extraordinarily fortunate to be given this much life. Although I've taken every precaution that I can think of, I have always felt a shortness of time. I think all of us do the same thing. We make a bargain with God to please give us a little more time. I just hope and pray that I have some more healthy years to see this work come to fruition. That's what I'm praying for.

What were your expectations for Susan G. Komen for the Cure?

We always wanted to have influence. We never wanted to be large for the sake of being large, but we always wanted to be effective. But remember, in 1982 there was no wide use of cell phones, no 800 numbers and no Internet. I started in Dallas because that's where I lived with my husband [the late restaurateur Norman Brinker, whose company, Brinker International, owns and franchises such eateries as Chili's and Maggiano's Little Italy].

I envisioned an organization that had the entire community involved. Growing up I saw the March of Dimes. They were everywhere. They cleaned out your pockets.

Because of the March of Dimes, I saw that our government got involved, and our teachers and parents. Everybody was involved in the war against polio. It taught me a lot about what happens when people mobilize against a killer.

When I started you couldn't use the word “breast” on television. You couldn't have it in print. For our first event, the newspapers had to use “women's cancers.”

I'm no rocket scientist. All of a sudden, my sister dies at 36. I start to wonder, 'How big is this disease?' During the crisis of my teenage years, the Vietnam War, 59,000 Americans died. During the same period, 330,000 people died of breast cancer, and there wasn't a peep. What's going on here?

The realization was that before we could ever make changes in cancer clinics, before we could inspire researchers and fund them, we had to create awareness and change the culture to fight a deadly disease.

How do you change the culture?

It comes from grassroots involvement, the engagement of large numbers of people. People need a place to share their story, to learn, to bond. At the time I was 33 years old. I was brash and stupid. I thought I could cure this in 10 years. We put a man on the moon, what the heck? We had cured polio. This had to be easy.

It was only when I got into it and started learning, going to the endless scientific meetings, that I learned otherwise. It was very hard in those early days to get women to voice their fears and voice what they were going through.

Now, years later, you have everyone wearing pink.

There's not enough pink. Raising awareness and keeping it are two different things. Life moves fast. People are bombarded every day by new things. It's very easy to lose your share of market awareness. People grow fatigued with the message. So you have to reinvent yourself. You take the old messages, but you deliver them in 100 new ways.

Awareness is not where it needs to be globally, either. In 30 of the low-resource countries, the word 'cancer' isn't spoken. There are no cancer registries. The millennium development boards of the United Nations, the ones that deal with poverty and women's issues, don't even mention cancer.

But don't think for a minute that all the messages have been heard in this country, either. We have unbelievable pockets of poverty. We are worried that the gains of the last 30 years will decline because so much health care will be pushed down to the states. And you know what's happening in the states. Screening in Medicaid programs may be in jeopardy now. It's not going to be pretty for the next several years.

How close do you think we are to an actual cure for breast cancer?

What you're going to see in the future is a sort of knitted web of personalized therapies. You will see us diagnose what a woman has, identify what therapies will work, and do this much more cost-effectively.

What we need are preventive blood tests for markers that show us who is more likely to develop a cancer. Then we can take steps to neutralize it, to keep it from developing in the first place. That's what we need for a cure, and that won't be available for many, many years.

In the short term, what we are doing now is not perfect. But if we can make this a manageable disease, such as diabetes, where there's some quality of life, a lot of people will settle for that and be very happy that they can get it.

Do I wish progress had been faster? Do I wish I could look at you and say that a woman won't die today of breast cancer? With certain forms of the disease, we're getting very close. I'm proud that even though it's not a cure, we've come this far. Sooner or later, we're going to get an “A.”

I believe that we will cure breast cancer, over time. Whether its 50 years or 100 years, we will cure it. Will it be in my lifetime? Well, I didn't expect to be using the computer and tweeting at my age. We are galloping faster in treatment and therapy then I might have imagined.

What role should men play to support their wives, daughters, sisters and friends who might have breast cancer?

A man needs to clearly deliver a message to his spouse, or partner, or sister or friends that surgery and treatment won't lessen his interest in her, that's she's more than a breast to him, and that he cares about her future and will do more, be a real friend, during this time.

I know that it is still the case that some women will often do nothing about treatment rather than risk losing the affection of their mate. It's sad, and we must work hard to make that not happen.

What needs to be done to maintain Komen for the Cure?

We have been supported by corporate foundations and grassroots efforts. We've never received a large grant from major foundations. Corporate support has been wonderful. We've had some very generous gifts from individuals. David Rubenstein [co-founder of the Carlyle Group and chairman of the John F. Kennedy Center for the Performing Arts], is committed and will head our 'Honor the Promise' campaign. But we've received no mega-gift. I'm not sure why. Perhaps they think we don't need the support. But we do.

When it comes to government, the only place I would like to see more is on the community side. All health care begins at home, right in your town. I know that there are budget shortfalls, but I would like to see more effort put into detection, education and early treatment for cancer. People don't like to spend money on prevention or detection, but it works. We may cure this disease in the lab, but it must be paired with outstanding community outreach. When it is, we make significant progress.

We have a leadership team of five really smart people. I'm the only “C” student on it. They are all brilliant. We have always done what we have said we would do. People who donate to Komen for the Cure will get the best rate of return of any organization or research institution in the world. It's the best way to fight cancer. It's as simple as that.