Breast Cancer Charity: Susan G. Komen for the Cure

Breast Cancer Charity: Susan G. Komen for the Cure

By Sean Higgins

Organization Trends, February 2012, available in PDF form here: OT0212

Summary:  Philanthropy in support of breast cancer awareness and treatment has gone mainstream and big-time.  But what does it accomplish? The “Race for the Cure” activities sponsored by the charity that honors Susan G. Komen raise some disquieting questions about philanthropy that relies on cause-related marketing.

When feminist writer Barbara Ehrenreich was told she had breast cancer she knew she faced a long ordeal. What she didn’t realize was that the ordeal included dealing with breast cancer charity. Ehrenreich discovered that breast cancer charity was a culture unto itself, one that didn’t take kindly to skeptical inquiry.

“The first thing I discovered as I waded out into the relevant (web) sites is that not everyone views the disease with horror and dread,” she noted in her book Bright-Sided: How Positive Thinking Is Undermining America (2009). Instead Ehrenreich encountered a culture of uplift and inspiration that honored sisterhood and empowerment. Celebrating women with breast cancer at public events and through the sale of pink-themed products seemed the be-all and end-all of breast cancer charities. No one with the disease was a victim. Everyone was a fighter. And all their stories were meant to inspire, even if some of those fighters lost their battles.

“No one among the bloggers and book writers seemed to share my sense of outrage over the disease and the available treatments,” she noted. “What causes it and why is it so common, especially in industrialized societies?” Ehrenreich discovered that voices like hers are rare, and when they are raised they are scolded and told to be quiet. Instead, a burgeoning “pink culture” is encouraging women to treat breast cancer as a rite of passage. Breast cancer is regarded almost like menopause or hair turning gray – something that just inevitably happens in one’s life.

Some breast cancer survivors even see it as a gift or a wake-up call. It’s an opportunity to reorder one’s priorities and focus on what’s really important. Cancer becomes a way of becoming a better person. Says Ehrenreich: “Everything in mainstream breast cancer culture serves, no doubt inadvertently, to tame and normalize the disease: the diagnosis might be disastrous, but there are those cunning pink rhinestone angel pins to buy and races to train for.”

Breast cancer generates charitable activities that appear free from controversy because the disease affects people from all walks of life, cutting across racial, economic and geographic boundaries. Genders too. Although less likely to strike men, they can get it as well.

Breast cancer is not tied to an unhealthy practice or reckless lifestyle. Consequently, support for breast cancer awareness, its treatment and cure is neither ideological nor partisan. Unlike, say, AIDS activism, which is linked to homosexuality and gay rights, taking action against breast cancer does not imply support for any cause other than itself.

Fighting breast cancer is an easy cause to win support for. According to Ehrenreich, “It’s the biggest disease on the cultural map, bigger than AIDS, cystic fibrosis, or spinal injury, bigger even than those more prolific killers of women – heart disease, lung cancer and stroke.”

Leading the “Fight” Against Breast Cancer
How did the disease get so big? For that we need to look to Susan G. Komen for the Cure, a public charity that’s made itself the leader in the “fight” against breast cancer.

Known until 2007 as the Susan G. Komen Breast Cancer Foundation, the nonprofit is one of the largest and most successful charities in the U.S., a fundraising juggernaut that has skillfully tapped the public’s earnest desire to eradicate breast cancer. Since its establishment more than a quarter-century ago, it has raised nearly $1.5 billion. Its signature event is the annual “Race for the Cure,” a series of five kilometer runs and fitness walks held in over 150 cities across America and overseas. Susan G. Komen events attract major corporate sponsors, 100,000 volunteers, and more than 1.5 million participants every year.

What the event hasn’t accomplished is success in beating cancer. Overall, breast cancer rates for women have actually increased over the last three decades. The number of women diagnosed with it is up, survival rates have barely budged, and, like all other cancers, no cure is on the horizon. The foundation, whose publicity machine regularly touts progress against breast cancer, downplays these facts.

Breast cancer’s grim details are prompting many critics to train a harsher eye on the goals and tactics of Susan G. Komen. Their objections to the group’s activities fall into three categories.

Many medical researchers contend that the group may actually harm women by misleading them about certain medical issues, particularly the foundation’s insistence on early and regular screening for breast cancer. Research studies by the Institute of Medicine have concluded that this approach has caused many women to receive false-positive diagnoses, leading them into harmful and unnecessary therapies. Early and routine mammography can also be dangerous and increase the chance of getting breast cancer. Even the accurate detection of some breast cancers may lead to over-treatment and unnecessary surgery.

The operations and management of Susan G. Komen have also come in for criticism. It’s alleged that Komen has been co-opted by the corporations that partner with it (a process dubbed “pinkwashing” by critics) and that the success of its promotional activities has made it too litigious in protecting its trademarks. The group’s habit of giving awards and grants to Planned Parenthood, the nation’s largest abortion provider, has also been attacked.

Finally, Susan G. Komen for the Cure is faulted for creating what some call “pink culture.” This is the atmosphere of relentless can-do positivity that permeates public discussions of breast cancer. Critics say the charity’s cheerful and upbeat cause-related marketing is frivolous and sentimental, giving women false hope and discouraging skepticism and the kind of hard thinking needed to confront a deadly disease.

Origins and Finances
Susan G. Komen for the Cure is a 501c3 nonprofit headquartered in Dallas, Texas whose revenue in 2009 (data for the most recent year available from its IRS tax forms) was $171 million. The charity is named after the older sister of Nancy Brinker, who created the organization in 1982 and who serves as its chief executive officer today. Komen died of breast cancer in 1980 at age 36.

The organization that Komen’s death inspired is funded primarily by $135 million in grants and contributions. Its annual breast cancer runs and other activities generate an additional $33 million and $3 million comes from investment income.

Unlike some notorious “anti-cancer” charities that pour most of their contributions into more fundraising, Komen appears to appropriately use its revenue for research and public education. About half its revenue, nearly $79 million, funds grants for clinical research into breast cancer. Another $55 million funds public health education, primarily to urge women to get breast cancer screenings. A little less than $4 million funds grants for screening programs.

The remainder goes into overhead: $3.8 million for executive compensation, $14.5 million for staff salaries, $2.3 million for employee benefits, $2.5 million for travel, and $2.4 million for conventions and conferences.

Komen has spent between $400,000 and $800,000 annually to lobby Congress and federal agencies to support the breast cancer cause. In March 2008, Brinker testified before the House Appropriations Committee, calling for lawmakers to increase the budget for the National Institutes of Health to $30.8 billion, a 6.5% hike from the prior year. Brinker also urged appropriators to raise the National Cancer Institute’s budget by 9.5% to $5.3 billion, and to increase the budget for the Centers for Disease Control and Prevention’s breast cancer program by $250 million (a 25% increase). She made no request for her own nonprofit, but repeatedly said it “couldn’t do it alone” and needed funding for other organizations. Pitches like Brinker’s are effective. Since President Nixon declared a “war on cancer” in 1971 Congress has steered billions of dollars for cancer research into federal health agencies. Komen’s board members and top staffers regularly address boards, commissions and federal agencies on the need for taxpayer support of breast cancer research.

Komen’s previous CEO, Hala Moddelmog, a breast cancer survivor, received $456,437 in annual compensation, according to IRS filings. (She has since become CEO of the Arby’s fast food chain.) Nancy Brinker, Komen’s founder and current CEO, receives no compensation despite her 55-hour work week.

“Pink” Culture
Komen is careful to appear nonpartisan and nonpolitical, which helps it court political support beyond feminist networks of women’s groups. Its annual runs have won support from the Clinton and Bush administrations. George W. Bush even appointed Brinker ambassador to Hungary (2001-2003).

There’s no denying that Komen’s annual Race for the Cure event has wide public support. Consider this description of the 1999 race in Washington, D.C.

While the race itself took runners through the streets of the capital, the rally site was located on the grounds of the Washington monument … Immediately alongside the monument stood a 150-foot tall bright pink, looped ribbon, the now ubiquitous representation of breast cancer charity and awareness in the United States … At 8:30 a.m., buoyed by this intensely joyful atmosphere, the race began. Led by Al and Tipper Gore (the honorary race chairs) and numerous members of Congress, 65,000 runners, walkers and wheelchair racers lined up on Constitution Avenue and moved slowly forward as they waited for their turn to cross the starting line … As participants finished the race by (they crossed) under yet another giant metal archway festooned with pink balloons. (Samantha King, Pink Ribbon, Inc: Breast Cancer and the Politics of Philanthropy, 2006).

Komen supporters say the charity’s goal is to change the way people think about breast cancer. Brinker has said the topic was taboo well into the 1980s. Many women found it difficult to discuss a disease whose principal treatment was a double mastectomy, the surgical removal of both breasts. Male CEOs shunned corporate involvement in charities focused on something so radically invasive of a woman’s body.

The organization set out to destigmatize the disease. In addition to the annual race, it launched advertising campaigns, sales of Komen-branded, pink-themed clothes, jewelry, cosmetics and teddy bears aimed at increasing public awareness of breast cancer.

Most importantly, it urged women to inform themselves about breast cancer and to get mammograms. “Getting regular screening tests is the best way for women to lower their risk of dying from breast cancer. Screening tests can find breast cancer early, when it’s most treatable,” Komen says on its website. Its mantra is “early detection saves lives.”

“The foundation’s advocacy arm, the Advocacy Alliance, focuses primarily on advancing policies that almost always relate to screening and increased public and federal investment in breast cancer,” writes Gayle Sulik, author of Pink Ribbon Blues: How Breast Cancer Culture Undermines Women’s Health (2010).

Komen’s messaging is so pervasive that it has crowded out other voices. The National Alliance of Breast Cancer Organizations—at its peak it was a coalition of 370 organizations—closed its doors in 2004, citing falling foundation grants. Other nonprofits sponsor activities—they range from the Avon Walk for Breast Cancer (which raised $55 million for the Avon Products Foundation) and the bicycling Ride to Empower (which supports the Breast Cancer Network of Strength—2009 revenues: $7.7 million) to the National Marathon to Finish Breast Cancer (2010 revenue: $2.1 million)—but Susan G. Komen for the Cure tends to sweep up most of the charitable contributions and corporate sponsorships.

Komen’s advocacy for early and regular screening has high profile support. President Clinton declared the third Friday of October “National Mammography Day” in 1993 and encouraged companies and clinics to give tests free of charge. (October is National Breast Cancer Awareness Month.)

Does It Matter? Does It Help?
But does it help? Critics say not much.

There has been progress, but it’s been halting. Between 1973 and 1998, there was a 40% increase in the number of women diagnosed with early-stage breast cancer, a rise largely attributed to an increase in screening. This should have resulted in a decrease in women diagnosed with later-stage cancer, but it has not. Overall, since 1990 the death rates for women diagnosed with breast cancer have declined, albeit slowly – just 3.3% per year for women under 50 and 2% per year for women over 50.

Under current trends 1 in 8 women will get invasive breast cancer. The odds of getting invasive cancer were actually lower in 1975, about 1 in 11. The chance of a woman dying from breast cancer is 1 in 35, according to the American Cancer Society.

According to the National Cancer Institute, in 1975 there were 105 diagnoses of breast cancer per 100,000 women. The mortality rate was 31 per 100,000 women. By 2007, the rate was 125 diagnoses per 100,000 women with 23 deaths per 100,000.

That sounds like progress. More cancers are being detected early, leading to fewer deaths – even if there are more cancers occurring. But the apparent decline has been boosted by the fact that many of the diagnoses now made involve the earliest stage of the cancer, called “Stage 0,” which has about a 95% survival rate even if the patient does not seek treatment. Indeed there is a debate in the medical community whether what is found in these diagnoses qualifies as cancer or merely evidence of higher risk for the disease later.

Surprising as it may be to learn, the presence of cancerous cells in a woman’s breasts is not automatically a death sentence. Many will never get sick. The Los Angeles Times reported in 2009 that: “Autopsy studies have found undetected breast cancer in about 37% of women who died of some other cause. And a study of 42,238 Norwegian women published in November calculated that 22% of symptom-free cancers found on a screening mammogram naturally regressed on their own.”

The problem with mammograms is that they are far from precise. The Institute of Medicine, an arm of the National Academy of Sciences, has found that of all mammograms that indicate breast cancer, 75% are actually false-positives. The chance of getting a false-positive during a regular screening is about 10%.

When a mammogram indicates the presence of cancerous cells, a biopsy usually follows to confirm the initial diagnosis. Several may be required and they can range in cost from $1,000 to $5,000 each. In others words, a substantial amount of money is spent just to determine that the mammogram was wrong, driving up health care costs.

Even when it accurately detects cancer, poorly informed patients may assume the worst regarding their diagnosis. Nearly a quarter of all diagnoses are Stage 0 cancers. Just 20 years ago these cancers represented just 1-2% of all cancer diagnoses.

Nevertheless, the increase in diagnosis of the breast cancer, even early-stage ones, has resulted in 30% more surgery and 20% more mastectomies. A quarter of the mastectomies involve women with Stage 0 cancers, suggesting they may not have accurately been informed about the low risks they face.

A 2009 Swedish study found that for every 2,000 who get mammograms over a ten year period, one will avoid breast cancer but another 10 will get treatments for non-invasive, non-threatening cancers. Mammograms can err in the other direction too. They miss actual cancerous growths 25-40% of the time giving women a false sense of security regarding their health.

It is even possible that breast cancer screening itself can increase the risk of getting cancer. Mammography machines are basically x-ray machines and x-rays are a form of radiation. That’s why your dentist puts that heavy lead apron over your body and steps out of the room when your teeth are x-rayed.

According to the Food and Drug Administration, a single mammogram exposes a woman to three month’s worth of natural background radiation. If a woman gets one annually, in just a decade she’ll have exposed herself to 2 ½ years more radiation than she would have otherwise. Studies have shown that x-rays can promote the growth of cancer cells in women with a genetic predisposition to the disease – one of the very groups urged to get regular screening.

“For too long, we’ve taken a brain-dead approach that says the best test is the one that finds the most cancers — but that’s wrong,” Dr. H. Gilbert Welch of the Dartmouth Institute for Health Policy and Clinical Practice told the Los Angeles Times in 2009. “The best test is the one that finds the right cancers and nothing else.”
Even the world’s leading authority on breast cancer has questioned screening’s efficacy.

“Screening is really good at finding the slow, ploddy, probably-not-going-to-kill-you cancers, but it’s not so good at finding the fast, aggressive ones,” Dr. Susan Love told the L.A. Times.

In cases where mammographies detect fast-growing cancers, the growth is often too far along by the time it is detected for there to be effective treatment.

Komen has rejected calls to rethink its focus on testing. “I don’t think you can say that we’re overtreating those women. We know that some of these cancers become invasive,” Elizabeth Thompson, Komen’s vice president of health sciences, told the L.A. Times. “We need to keep hammering away at our basic message, which is, early detection saves lives.”

The Problem of Corporate Philanthropy
Some critics accuse the pharmaceutical industry of having a financial interest in promoting early screening. They point, for instance, to Bristol-Myers Squibb, which in 2007 had worldwide sales of $5.1 billion, of which $1.5 billion was in oncology-related drugs. The company has been a sponsor of Komen’s annual races, its signature fundraising event.

Pink Ribbon Inc. author Samantha King notes: “The Komen Foundation’s focus on early detection and cure-oriented science has helped it to win generous sponsorship from pharmaceutical companies, such as Zeneca and Bristol Myers Squibb, and mammography equipment and film manufacturers Du Pont and Kodak.” She sees a symbiotic relationship developing between the advocacy of the charity and the interests of the company.

Komen cultivates ”partnerships” with corporations and other organizations eager to be associated with a popular charity.  Its website lists more than 200 partners. They include everything from American Airlines, Bank of America, and Ford Motor Company to Omaha Steaks, the Dallas Cowboys and the Charlotte Motor Speedway.

Komen does not shrink from selling its endorsement either. Its website explains how to become a corporate sponsor and describes the benefits of association with the Susan G. Komen brand name:

In today’s economy, Americans believe it’s more important than ever for companies to be socially responsible. In fact, 83% of Americans wish more of the products, services and retailers they use would support causes.

We always welcome the opportunity to develop new corporate partnerships. Our cause marketing team looks for companies with a solid history and strong brand image who would like to make a contribution that is significant and clearly defined to the consumer. Furthermore, our goal is to offer a wide variety of opportunities for people to get involved.

The website includes links to Duke University survey research to back up its claims.

It’s not clear whether soliciting this kind of corporate philanthropy benefits either the company or those who suffer from breast cancer. For example, Yoplait yogurt (a French product franchised in the U.S. by General Mills) says that since 1998 it has raised more than $13 million for Komen with its “Save Lids To Save Lives” campaign. It invites yogurt consumers to mail the container’s foil lid back to the company, which donates 10 cents to Komen for every lid it receives. Since a postage stamp is now 45 cents, it’s likely donors would be better off making a direct contribution to the charity. But that wouldn’t give Yoplait or Komen any cross-marketing opportunities.

In 2010 Komen partnered with KFC (formerly Kentucky Fried Chicken), which sold pink buckets of chicken adorned with the names of breast cancer victims, both living and dead. The company promised to donate 50 cents to Komen for every bucket sold, a philanthropic gesture that prompted criticism from other breast cancer activists who believe environmental carcinogens are a possible cause of breast cancer. They decried linking a women’s health cause to high-calorie, high-fat fast food.

Komen’s advocacy and fundraising tends to focus on finding new therapies and cures. Less often does it ask, Why do women get breast cancer? Researchers have determined that some of the cause is genetic and there are known risk factors, such as delaying childbirth. However, only 30% of women who are diagnosed with breast cancer have a known risk factor. In most cases no one knows the answer.

Since 2003, Komen has given affiliates of Planned Parenthood –the sacred cow of the activist Left— some $4 million for clinic screening programs. When anti-abortion activists point to studies suggesting that abortion is a risk factor for breast cancer, Komen has responded by calling the claims “questionable,” adding that “Scientific evidence … does not support the conclusion that induced abortion or miscarriage raises the risk of breast cancer.” What the statement ignores is that the evidence has not ruled out a connection either.

Marketing and Media: the Future of Philanthropy?
Komen’s relentless focus on fundraising and media campaigns has made it unusually brand-conscious. The nonprofit zealously guards its trademarks and slogans, often to the point of attacking other anti-cancer nonprofits.

For instance, in 2009 Mary Anne Tighe, president of the group Uniting Against Lung Cancer, figured it would be a fine idea to organize a fundraising “Kites for the Cure” event. She figured wrong. Tighe received a sternly worded letter from Komen warning her to change the event’s name or face legal action. The phrase “for the cure” was trademarked, and Komen was not about to let anyone else use it. She was further warned that she could not use the color pink in conjunction with her event.

“Komen thinks they own pink,” Tighe told the Wall Street Journal, adding, “We cannot allow ourselves to be bullied for no purpose.” But Tighe was forced to relent when the charity followed through on its threat. She could take solace in knowing that fundraisers trying to promote “Kayak for the Cure,” “Juggling for the Cure,” and “Bark for the Cure” have received similar threatening letters.

“We see it as responsible stewardship of our donor’s funds,” Jonathan Blum, Komen’s general counsel, told the Journal. Komen claims it has lost funds because donors can become confused and cut checks to other groups thinking they are supporting breast cancer research.

Komen’s fundraising practices are becoming the “new normal” of philanthropy. More and more nonprofits accept the necessity of marketing and advertising, spending money to make money. But this makes many donors uneasy; they are reluctant to contribute to charities with high overhead and extravagant fundraising bashes. Their traditional idea of charity conflicts with a new reality in which accomplishing your mission requires fast-paced self-promotion. The folks at Komen are likely to respond: What’s wrong with using the competitive forces that work in the for-profit sector?

Sean Higgins is a Washington, D.C.-based reporter.


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