RUNNING FROM THE TRUTH

How the Dallas-based Susan G. Komen Foundation fights health care reforms and fails breast cancer patients

by Mary Ann Swissler

Southern Exposure 30.3 (Fall 2002)

Judy Brady has little use for the limelight. Yet, as someone with much on her mind, she has spent a lot of time writing, speaking, and holding up signs, to protest what she terms “the marketing of breast cancer.” One of the worst examples, she says, is the Dallas-based Susan G. Komen Breast Cancer Foundation and its annual fund raiser, the 5K Race for the Cure.

Now held year-round in 110 U.S. cities and abroad, Brady and the group Toxic Links Coalition find the festivities offensive. The races, they say, focus women only on finding a medical cure for breast cancer, and ignore the environmental conditions causing the disease, the problems of the uninsured, and the political influence of corporations over the average patient.

To drive this point home, Brady and the coalition have, since 1994, helped organize a vocal and visible presence most years at Komen's San Francisco race. Sometimes leafleting, and sometimes holding up hand-painted signs and banners, they always face stiff competition with the typically uplifting and euphoric Race atmosphere.

Pink, the chosen color of the international breast cancer movement, is everywhere, on hats, T-shirts, and ribbons. Up to 1 million participants in 2000 alone were greeted as they crossed the finishing line with live music, inspirational speakers, and acres of colorfully adorned corporate booths. A sense of community and camaraderie pervades the celebrations and their hundreds, sometimes thousands, of breast cancer survivors and friends of survivors.

What's missing is the truth, wrote Brady in a Spring 2001 newsletter article for the Women’s Cancer Resource Center, a support services center located in Berkeley. “There's no talk about prevention, except in terms of lifestyle, your diet for instance. No talk about ways to grow food more safely. No talk about how to curb industrial carcinogens. No talk about contaminated water or global warming,” Brady wrote.

Brady and the coalition are persistent in their message, yet the circle it travels in remains small, especially when compared with that of the Komen Foundation and its founder, Nancy G. Brinker. Now the U.S. Ambassador to Hungary, Brinker is the E.F. Hutton of the breast cancer world—when she speaks anyone who's anyone listens.

To block from public view the realities Brady and other critics cite, Brinker depends on the blockbuster PR value of the 5K Race for the Cure. The year-round calendar of cancer walks that draw grief-stricken yet hopeful patients and their loved ones, along with an eager-to-please media, preserve Brinker and her group’s image as defenders of the average American woman tragically struck with breast cancer.

But most would be shocked to find that the Komen Foundation helped block a meaningful Patients’ Bill of Rights (PBR) for the women they’ve purported to serve since the group began in 1982.

Despite proclaiming herself before a 2001 Congressional panel “a patient advocate for the past 20 years,” demanding access to the best possible medical care for all breast cancer patients, Federal Election Commission records show how the Komen Foundation and its allies lobbied against consumer-friendly versions of the Patients’ Bill of Rights in 1999, 2000, and 2001. Brinker then praised old friend George W. Bush in August 2001 for backing a “strong” Patients’ Bill of Rights, while most patient advocates felt betrayed.

And why wouldn't she, since Bush nominated Nancy Brinker for a U.S. Ambassador post less than one business quarter earlier, at the end of May 2001? Bush also no doubt helped toast Brinker’s Congressional approval for the Hungary position on Aug. 3, 2001, less than 24 hours after the House version of the Patients' Bill of Rights, dubbed “the HMO bill of rights” by critics, passed on Aug. 2, 2001.

LOBBYING LARGESSE

It’s no accident that the Komen Foundation favors the Republican bill. In fact, the ideals of the Bush Administration chime with those of Komen’s founders, a fact illustrated over and over again, and not only because they travel in the same polo-playing, oil-rich Texas set. A July 12, 2001, agreement, for example, between the President and five companies to provide Medicare prescription discount cards for Medicare patients included a company called Caremark Rx where Nancy Brinker was on the board of directors, according to financial records. Another vendor, Merck-Medco, is one of the many drug companies found in the Komen investment portfolio. (Nancy Brinker resigned all board seats, including Komen, when she received her ambassadorship.) If approved, discount card holders would receive a discount of up to a 10 percent on brand-name drugs.

Democrats meanwhile, including Sen. John D. Rockefeller IV, called the whole discount card idea “laughable, utterly superficial,” since the cards already exist, are widely available, and do little to resolve soaring prescription costs and even costlier medical treatments.

To get their way, the Komen group relies on longtime Washington lobbyist Rae F. Evans, a self-described “corporate strategist” with little experience or interest in grassroots advocacy, who doubles as a lobbyist for Nancy Brinker's spouse, restaurant magnate and polo champion Norman Brinker, of Brinker International. Norman Brinker made his fortune off restaurants such as Streak & Ale, Chili’s, and Bennigan’s, and has served on the Haggar Corporation’s board of directors—along with Rae Evans—since 1994, according to the Forbes internet database of companies.

Also on board for Komen’s Patients’ Bill of Rights efforts is Akin Gump, the fourth-largest lobbying firm in the country, whose roster reads like a who’s who of anti-health care reformers. They have direct links to the Health Benefits Coalition, industry's leading PAC in the fight to stop a Patients’ Bill of Rights that would boost patients’ rights over their health plans. This 30-member coalition of insurers, automakers, restaurants, and other powerful trade groups presented a united front before Congress, spending millions on lobbying and advertising.

Akin Gump clients during 1998, 1999, and 2000 included HBC members Cigna Corporation and New York Life Insurance, along with the Brinker-backed National Restaurant Association, according to FEC records. A&G also boasts a number of insurers, automakers and pharmaceutical firms as clients.

For his part, Mr. Brinker, a longtime Komen board member, was a bitter foe of a meaningful Patients’ Bill of Rights, through the efforts of both Evans and the National Restaurant Association. This “other NRA” continually topped anti-PBR lobbying rosters, according to FEC records.

Norman Brinker has also lobbied against mandatory minimum wage laws and laws banning indoor smoking, especially inside restaurants. He even joined George McGovern, of all people, in condemning indoor smoking bans as Nazi-style repression in a March,1998, Washington Times op-ed piece.

PATIENT ADVOCATES OR “BUSH PIONEERS”?

Through the years, the Brinkers helped deliver the state of Texas to Bush, Jr., for the governor's seat and then the Presidency. Their phenomenal fund raising skills earned them the moniker of “Bush Pioneers,” followed by committee positions for the Bush Inaugural Ball, which requires a minimum $25,000 donation. On her own, Nancy Brinker lists nearly $256,000 in both soft and hard money donations to Bush and the Republican Party, according to FEC records. Donations to Democrats totaled exactly zero.

Rae Evans likewise donated $500 to the Bush for President Campaign in 1999. The result is that lobbyists from Evans & Black and Akin Gump walk in the doors of elected officials as important campaign contributors, not as mere constituents.

Not surprisingly, the Komen Foundation owned $162,843 in Brinker International stock during 2000 alone, the only year for which records are available. The Foundation also owns stock in several pharmaceutical companies and one of the largest makers of mammogram machines in the world, General Electric.

Furthermore, at 1998 Food and Drug Administration hearings the Komen Foundation was the only national breast cancer group to endorse the cancer treatment drug tamoxifen as a prevention device for healthy but high-risk women, despite vehement opposition by most other breast cancer groups. Its maker, AstraZeneca, has long been a Komen booster, making educational grants to Komen and maintaining a visible presence at the Race For the Cure. And in 2000, the parent company, Zeneca, Inc., employed Multinational Business Services, the lobbyist for the anti-PBR group Health Benefits Coalition.

Tamoxifen is one of the most widely used and successful breast cancer treatments today, but groups such as the Women’s Health Care Network, Breast Cancer Action, Medical Consumers Union and San Francisco activist Marilyn McGregor all issued critical statements of the drug at the 1998 hearings. They testified about the drug's troubling links to uterine cancer and the FDA’s questionable criteria used to define a woman as high-risk.

What is only slightly less surprising is the half-million dollars’ worth of stock Nancy Brinker owns in U.S. Oncology, a chain of for-profit treatment centers (on whose board she sat at least from 1999 through 2001, according to company records). Their lobbying firm of Rose & Hefling is a lobbyist for the Philip Morris tobacco company, according to FEC records. Another lobbyist for U.S. Oncology in 2000, Alison McSlarrow of McSlarrow Consulting, is former Deputy Chief of Staff to U.S. Senate Majority Leader Trent Lott (R-Miss.)—a chief architect of the pro-HMO version of the Patients’ Bill of Rights.

In 1994, on a smaller but no less enterprising note, Nancy Brinker launched a line of breast self-exam kits through her company, In Your Corner, Inc. She sold the venture in 1998 for a profit, according to her biography on the U.S. Ambassador web site.

Incredibly, the Komen Foundation professes to enforce a conflict of interest clause. According to a written statement solicited for this article from Komen CEO Susan Braun, “Board and Committee members sign a conflict of interest form and are required to disclose any conflicts of interest, should the need arise.”

VIEW FROM THE TRENCHES

The Komen group’s stock portfolios and cozy relationships with the Republican leadership set them apart from most breast cancer patient groups. Even the Beltway insiders at the National Breast Cancer Coalition (NBCC), who played a major role in creating the national research and early screening agenda that sprung up nearly overnight in the early 1990s, look austere in comparison. So when the Patients’ Bill of Rights compromise was announced and the Komen group no doubt uncorked the champagne to celebrate their latest victory, the NBCC, among many others, was appalled.

“Late at night, and behind closed doors,” read the Coalition's August 2001 press release, “members of Congress rewrote what would have been a strong and enforceable Patients’ Bill of Rights, turning it into a sham for patients while continuing to protect HMOs.”

According to the same Coalition statement, “The ‘compromise’ that members of Congress agreed to is worse than current law -- it stacks the deck against patients and inappropriately turns external review into judge and jury. Finally, this sham of a Patients’ Bill of Rights makes a cause of action in state court tougher for patients, but easier for HMOs.”

“Any corporate ties to a cancer-related industry raises huge credibility issues for a group that is trying to influence public policy,” says Sharon Batt, author of a seminal book on the movement, Patient No More: The Politics of Breast Cancer, and current Chair of Women’s Health and the Environment at Canada's Dalhousie University.

“Sitting on corporate boards and organizations that have vested interests in cancer policies is an even higher level of conflict than taking funds: a board member is expected to promote the interests of that corporation,” she continued. “Even the NBCC takes money from the pharmaceutical industry, but I doubt [its leaders] sit on corporate boards,” a fact confirmed by an NBCC spokeswoman in a recent interview.

San Francisco-based Breast Cancer Action (BCA) goes one step farther, refusing all donations from corporations that make money from breast cancer such as pharmaceutical companies, tobacco and pesticide manufacturers, and cancer treatment facilities. BCA also launched a campaign to expose similar sponsorship ties inherent in the Avon cosmetic company’s fundraising run. Explained the group's executive director Barbara Brenner, “With the growing effort by corporations to look like ‘good guys’ by supporting cancer organizations, it is difficult, if not impossible, to know whether an advocacy organization’s positions are based on well thought out policies or on who’s paying the bills.” (Ironically, BCA rented a $100 booth at the same San Francisco Race they were helping to picket.)

Batt said that one of the dangers of Komen’s success is that only messages that don't threaten or embarrass corporations (who not so coincidentally have flocked to the Foundation), or the Republican Party, get through to the media and Congress.

For example, she said, during the 1990s the NBCC and smaller organizations may have convinced the National Cancer Institute and other government policy makers to begin addressing the health concerns of a more diverse group of women: ethnic minorities, lesbians and the poor. But the power brokers in government and the corporate world still listen most readily to the messages publicized by the high-profile Race for the Cure or, another corporate and Komen darling, the National Breast Cancer Awareness Month each October.

“The problem with those (awareness) programs,” said Batt, “is that, unless you also fund treatment for those same women, you don't help them by detecting their cancers earlier; and you perpetuate the emphasis on mammography screening, rather than prevention, better treatment, and equitable care.”

But it's an uphill battle, she said. “For one thing, the Komen Foundation has had more money. For another they carry friendly, reassuring messages through the media and their own programs, a phenomenon I like to term the ‘Rosy Filter’, meaning the public is spoon-fed through a rose-colored lens stories of women waging a heroic battle against the disease or the newest ‘magic bullet’. Yet little light is shed on insurance costs, the environment or conflicts of interest.

Nancy Brinker has reached large audiences by billing herself as an objective patient advocate and signing as a “medical speaker” with Barber & Associates, a booking agency that handles broadcasters and television experts such as ABC’s Dr. Nancy Snyderman, Dr. Bernie Siegel, Dr. Joyce Brothers, and Jane Brody of the New York Times.

THE ENVIRONMENTAL DISCONNECT

One topic you’ll never catch either of the Brinkers addressing is the need for a cleaner environment. The reason, critics say, is that their silence is bought and paid for by industrial sponsors whose financial support they rely on.

The most glaring example is international petrochemical giant Occidental Corp., big Komen boosters and the same folks who brought us Love Canal. They donate 4,000 square feet of “glass and marble offices” to Komen on the premises of Occidental’s Dallas headquarters.

The petrochemical industry, including Occidental, successfully lobbied in 2000 and 2001 for looser EPA regulations on air, water, and chemicals, while at the same time government researchers were reporting that auto and industrial emissions caused cancer. In March 2002 alone, the EPA approved a two-year delay of Clean Air Act rules that would cut toxic emissions from 80,000 industrial sources.

Karen Susag, another member of Toxic Links Coalition, said that she, along with Judy Brady, regularly picket the Race for the Cure in San Francisco to provide at least one voice on the issue. “The Race represents the idea that we can live in an unsustainable, polluted environment that makes people sick—and that it's okay because if we find a cure then we can live in this unsustainable way,” she said.

“I really don't think environmental causes of cancer are acknowledged enough,” said Dr. C.W. Jameson of the U.S. National Institutes of Health. Jameson directed a biennial report on cancer-causing agents published by the Institute of Environmental Sciences. “It warrants attention so people can make better, more informed choices, as to where they live or what professions they work in,” he said.

Officially, the Komen group is pro-environment, and joined with a national coalition of cancer and women’s groups in late 1999 to demand research on the links between breast cancer and environmental toxins. However, a subsequent Congressional bill, the Breast Cancer and Environmental Research Act, went nowhere fast when it was introduced in May 2001. Komen’s lobbyists made little or no effort to fight for the bill or the concepts behind it, according to mid-year 2001 lobbying records filed by Evans & Black and Akin Gump.

Perhaps not coincidentally, Occidental lobbyists also spent time in 2001 on the House version of the Patients Bill of Rights. Charles Black, one of Occidental's lobbyists, spouse of Evans & Black’s Judy Black, and a leading Republican strategist, is also a consistent lobbyist for Brinker International. Charles Black is a board member of the American Conservative Union, a group that defines pharmaceutical price controls as “a bitter pill for American consumers,” and criticizes supporters of controls for “beating up on the pharmaceutical industry.”

THE AMERICAN WAY?

Komen's political biases and conflicts of interest evade public scrutiny primarily because lobbyists and nonprofits like Komen are required to tell us only a few details of their work. As a Washington consumer group official quipped, “Politicians don't even want to admit talking to lobbyists much less saying which ones they spoke with, or why.”

In 2001, for example, Evans & Black listed both Democrat and Republican versions of the Patients’ Bill of Rights in their disclosure reports; their 1999 and 2000 reports were right out front by listing the Republican version. Likewise, Akin Gump's 2001 reports show they lobbied “pertaining to” the Senate's more liberal version. As a result it’s impossible to prove which version they were lobbying for. But it’s also easy to surmise, given the Komen Foundation’s characterization of the GOP-backed version as “strong,” its close and longstanding ties to President Bush and the Republican party, and its vested interests in the health care industry.

Komen lobbyist Rae F. Evans said that she refused to talk about which legislators were approached about the Patients’ Bill of Rights and their position on it because it would be “unethical.” Moreover, she said, “It's only a problem for journalists.”

Indeed, despite all these shenanigans, there’s nothing illegal here, and the Komen Foundation has plenty of company. According to University of Toronto researcher Allan Detsky, for example, 58 percent of writers of U.S. government clinical-practice guidelines have ties to pharmaceuticals.

And Komen’s freewheeling lobbying is possible because of a little-known exemption written into the U.S. tax code a quarter century ago. In 1976, the nation's nonprofit organizations were granted the right to hire, or go toe-to-toe with, professional lobbyists on Capitol Hill—while maintaining tax-exempt status. Nonprofits can spend 20 percent of the first $500,000 of annual expenditures on lobbying, 15 percent of the next half-million, and so forth, up to $1 million per year, according to an IRS fact sheet. Spent this way, the entire amount is deductible, allowing the Komen Foundation to emphatically state—as they have whenever asked—that they spend “zero dollars” on lobbying.

Can stock ownership, directors’ seats, campaign contributions, and longstanding business relationships result in any tangible effects on a nonprofit's mission? At best, it’s tricky to prove any material conflict of interest, and even a cancer patient-advocacy organization is allowed by law to be right-wing, well-connected, and pro-industry. According to Bennett Weiner, Chief Operating Officer of the Better Business Bureau Wise Giving Alliance, a national charity rating organization, charities can do whatever they want, “as long as they fulfill what’s described in their mission statement.” In Komen's case, that mission would be to “stop cancer as a life-threatening disease through research, detection and education,” according to Komen’s statements.

But, Weiner continued, it’s wrong for Komen’s literature, web site, and public statements to feature a central figure like Nancy Brinker—or Norman Brinker for that matter—while omitting relevant parts of their lives such as seats on boards of private cancer treatment corporations, stock interests, lobbying ties, or their political activism as GOP darlings. Weiner said, “If a charity is making recommendations to the public regarding health care among other things, and if they have ties to the industry, then the public needs to be able to objectively use that information.”

As it stands now, even the watered-down Patients’ Bill of Rights is on life support, after President Bush refused to sign it due to lingering concerns over the liability issue, according to a spokesman for U.S. Sen. Edward Kennedy (D-Mass.), co-sponsor of the Senate’s Bipartisan Patient Protection Act. Quiet negotiations with the President continue. In late June 2002, U.S. Sen. John Edwards (D-N.C.) released a statement saying, “(I) remain optimistic that negotiations with the White House will produce agreement on meaningful patient protection that Congress could pass this year.”

Ideally, this article would conclude with detailed rebuttals from the Komen camp. For their part, they have issued only a dizzying number of denials to even the simplest questions or assertions. The Foundation denies, for example, that they spend money to lobby, and denies that it is solely aligned with the Republican health care and environmental agendas. In a September 2001 letter in response to questions for this article, a Komen spokeswoman defends Mr. Brinker as a devoted “volunteer.” The Foundation even seemed to distance itself from Nancy Brinker by citing her new post overseas—as if her policies and political ties left Texas with her for Hungary.

Any kind of full disclosure could be slow in coming, given the vast tangle of political, business, and personal alliances involved. Even a spokesperson in the office of Sen. Edwards, a staunch defender of a liberal Patients' Bill of Rights, recalls the Komen Foundation as one of his biggest clients at Fleishman-Hillard, a corporate PR firm located in New York.

But in the final analysis, as Judy Brady points out, the Komen Foundation, and the Brinkers in particular, represent the systemic corruption of business as usual in a corporate-dominated society. “It would be a mistake to demonize the Komen Foundation,” Brady says.

“They have the best of intentions and I truly believe that they think they are doing good—with a capital ‘G.’

“What they don't see is that ‘business as usual’ is why we have cancer.”

Mary Ann Swissler is a writer based in northern New Jersey. She can be reached at maplemas@yahoo.com. This article was made possible through financial support from the Fund for Investigative Journalism in Washington, D.C.