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Komen charity under microscope for funding, science

February 8, 2012

Last Updated: 2012-02-08 16:53:05 -0400 (Reuters Health)

By Sharon Begley and Janet Roberts

NEW YORK (Reuters) - The Susan G. Komen for the Cure charity defines its mission as finding a cure for breast cancer. In recent years, however, it has cut by nearly half the proportion of fund-raising dollars it spends on grants to scientists working to understand the causes and develop effective new treatments for the disease.

While the absolute dollar amount of those grants has steadily grown, it has not kept pace with the surge in donations Komen has received, a Reuters analysis of the group's financial statements shows.

Komen has come under heavy public scrutiny since it moved last week to cut funding to Planned Parenthood, a women's health network that provides birth control, abortions and other services. Although it reversed that decision on Friday, the outcry has prompted a closer look from activists, media and lawmakers at how the charity powerhouse operates.

Critics within the philanthropic and research communities in particular have raised questions over its scientific approach to some issues and how it spends the money it raises.

Komen's financial statements since 2003 reveal how much the group known for its pink ribbon symbol spends on activities from research to education, screenings, treatment and fund-raising.

In 2011, the foundation spent 15 percent, or $63 million, of its donations on research awards that fund studies on everything from hard-core molecular biology to the quality of breast-cancer care for Medicaid patients.

That proportion was down from 17 percent in 2009 and 2010. In 2008, that percentage reached 29 percent of donations. The annual financial statements cover April 1 through March 31.

Komen reports spending a total of $685 million for research in the past 30 years, a considerable sum in private cancer philanthropy, and its money goes to a wide variety of initiatives.

"In 2011, 83 cents of every dollar spent went to mission programs," spokeswoman Leslie Aun said in an email statement to Reuters. "We're the only organization doing breast cancer on all these fronts - in research, global work, advocacy and community work."

The organization's 2011 financial statement reports that 43 percent of donations were spent on education, 18 percent on fund-raising and administration, 15 percent on research awards and grants, 12 percent on screening and 5 percent on treatment. (Various other items accounted for the rest.)

Aun did not immediately address the declining share of revenue that went to research in the past few years. In that period, Komen saw its annual revenue rise by almost $100 million to $420 million and increased its spending on education.

When informed of the figures, Komen supporter and widely-followed breast cancer blogger Lisa Bonchek Adams expressed surprise. The Connecticut mother of three was diagnosed with breast cancer in 2006, ran her first "Race for the Cure" in 2008, and raised $15,000 for Komen in 2009.

Although Adams knew that Komen spends a large fraction of its revenue on raising awareness of breast cancer and promoting screening, she said that the much smaller amount that goes to finding a cure "is definitely a concern; 15 percent is shockingly small."

(Komen research spending: link.reuters.com/huv46s.)

PLAUDITS FOR LOW OVERHEAD

Still, in categories like administration and overhead Komen wins plaudits from outside experts. Charity Navigator, an independent nonprofit that scrutinizes such groups' finances, awards it four out of four stars, and 65.55 out of 70 points for financial performance.

That reflects the relatively small amount Komen reports spending on administration and fundraising (18 percent of donations) and its accountability and transparency. Komen issues audited financial statements, for instance, and has policies on conflicts of interest and whistleblowing.

By comparison, the American Cancer Society (ACS) gets three stars and a score of 53.85. The Wishing Well Foundation, which fulfills requests from terminally ill children, gets zero stars and 4.8.

Komen also shines for what it pays founder and CEO Nancy Brinker: $417,712 in 2011. That is almost $300,000 less than the Breast Cancer Research Foundation reported in salary and benefits for its president last year. Cecile Richards, Planned Parenthood's president, received $354,716 in the fiscal year ending in June 2010.

In absolute terms, Komen is a leader in funding breast cancer research among private organizations. The $63 million it granted in 2011 pales beside the estimated $763 million spent by the National Institutes of Health in 2011 and the $150 million budgeted by the Department of Defense in 2012.

But it dwarfs the $17 million awarded by ACS for breast cancer research in 2010. In percentage terms, ACS spent 16 percent of donations on all cancer research, largely because much of its focus is "patient support," which includes providing transportation and housing for people undergoing treatment for cancer. It reported much higher fund-raising and administration costs than Komen, accounting for 30 percent of donations.

The Breast Cancer Research Foundation reported spending 92 percent of what it raised on research; the Juvenile Diabetes Research Foundation, 56 percent.

The Avon Foundation, which sponsors both walks and research efforts, does not itemize its breast cancer spending in its financial statements.

Planned Parenthood generates the bulk of its $1 billion in annual revenue from health services it provides and government grants. Donations accounted for $224 million in 2010, and the group's annual report did not identify how those specific funds were earmarked.

FOCUS ON WOMEN

Even $63 million is too little to support most of the worthy grant requests Komen receives: of the initial applications it receives, the group funds between 10 percent and 15 percent.

Of the full proposals - those deemed good enough that scientists were invited to submit an extensive description of their proposed research - it funds less than 20 percent, said a leading cancer researcher with close ties to Komen.

Some experts who applaud Komen for supporting research are critical less of the "how much" than the "what." They say funding choices may place too great an emphasis on treatment and the most basic of basic research, rather than prevention and a true cure.

"It would be good if they spent more on finding the cause of breast cancer and preventing it," said breast surgeon and author Susan Love, whose eponymous research foundation focuses on raising "an army of women" to volunteer for breast-cancer studies.

"They fund a lot of research on mice and rats and cell lines," she said. "But rats and mice don't get breast cancer; you have to give it to them."

That also raises doubts for some researchers about how applicable the results of lab rodent studies are to humans. Experts have begun to argue that an emphasis on this type of research partially explains why so little progress has been made in the war on cancer.

Komen, recognizing that concern, now supports studies "that have the potential to impact research and treatment in the next decade," says the cancer biologist.

The foundation's science advisors say they have also tried to identify areas that have gotten short shrift from other funders - for instance, the recurrence of a type of breast cancer fueled by the hormone estrogen many years after diagnosis. Many recurrences occur eight to 12 years after the initial diagnosis, when women think they are out of the woods.

THE 'AWARENESS' MESSAGE

By far, the largest single category in Komen's budget is "education." It spent an average of 37 percent of money raised on education from 2003 to 2011, the Reuters analysis showed, and 43 percent in 2011.

Education encompasses a wide variety of activities at Komen. One community grant was used to identify the seven "best" books on breast cancer and buy copies for local libraries. In general, education means getting out its awareness message, with an emphasis on screening mammography.

Komen's 2011 financial statement reports $51 million spent on screening services, 12 percent of donor dollars. In explaining its initial decision to stop funding Planned Parenthood's mammography programs, Komen said it wanted to support groups that provide that screening rather than, as Planned Parenthood does, offer referrals for it.

"Screening is their thing," said sociologist Gayle Sulik of the University of Albany and author of the 2011 book "Pink Ribbon Blues: How Breast Cancer Culture Undermines Women's Health."

"What they're best at is awareness, which you could also call publicity," she said. "Getting out the word that breast cancer exists is what they excel at - that and raising money. But if your mantra is 'end breast cancer,' screening isn't going to do it."

Although screening mammography detects breast cancer earlier than waiting for symptoms to appear, it does not decrease mortality from breast cancer as scientists, advocates, and public health experts had hoped.

After a number of recent studies concluded that screening mammography makes a small difference, if any, on mortality, the U.S. Preventive Services Task Force recommended screening mammography every two years for women 50 to 74, rather than annually, and having a first mammogram at 50 rather than 40.

That undercut Komen's mantra that early detection through screening mammography can reduce the risk of dying from breast cancer. An official statement spear-headed by Komen's scientific advisory board concurred with the task force recommendations.

"But some people at the affiliates and the national board were uncomfortable with that," says the cancer biologist close to Komen. "The result was some complex messaging," with the official Komen statement focusing more on increasing access to mammograms than on the emerging science about their dwindling medical benefits.

Komen's messages to women sometimes diverge from mainstream science in other ways as well.

The group urged insurers to continue covering the Roche drug Avastin even after the U.S. Food and Drug Administration rescinded its approval for breast cancer. The FDA decision was based on two large studies that showed Avastin does not prolong the lives of women taking it for metastatic breast cancer and can in fact cause serious harm. Komen emphasized that some women and their doctors claimed that Avastin was keeping them alive and that they would die without it.

The Komen view on Avastin was not shared by other breast cancer activists. National Breast Cancer Coalition president Fran Visco said that the FDA should never have approved the drug for that purpose in the first place.

Komen's advocacy of breast self-exams, part of its "awareness" message, also clashes with the position of the NBCC, a group that is widely respected for rejecting what it sees as false promises in detecting or treating cancer.

Because self-exams have not been shown to detect breast cancer earlier or to reduce mortality, the National Cancer Institute no longer distributes how-to guides. The Preventive Services Task Force recommends that doctors not even teach the practice.

Some Komen contributors say they hope the controversy over the organization's approach will prompt it to pursue its mission even more effectively. "This whole flap might be good for Komen in the long run," says Adams. "People have been afraid to criticize them, but

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