PHOTO: SCIENCEPHOTO/SHUTTERSTOCK

PHOTO: SCIENCEPHOTO/SHUTTERSTOCK

In 2010, when Jenessa Shapiro, a 32-year-old Los Angeles university professor, was diagnosed with breast cancer, she and her husband Noah Goldstein learned everything they could about the disease and its treatment. That included a deep dive into the organizations that fund research, including Susan G. Komen, the most famous brand in breast cancer philanthropy. But the more they learned, the more they wondered if Komen’s actual giving for research was in line with the public image it has developed and promoted so tirelessly, and for the most part, successfully.

For all its image-building as a leader in funding for research—one of the organization’s well-known slogans was "Komen for the Cure”—Goldstein says Komen actually devotes a far smaller portion of its budget to funding science than it would have the public believe. Additionally, he says, the organization is not at all transparent about how it distributes the many millions of dollars annually that it does disperse, lumping it under broad terms such as “education.”

As a business professor at UCLA with joint appointments in the psychology department as well as the David Geffen School of Medicine, Goldstein has the background to understand budgets as well as medical research. According to Komen’s 2017-1018 financial reports, said Goldstein, the organization spends only 16.3 to 19 percent of its annual budget on research. In comparison, the Breast Cancer Research Foundation (BCRF) devotes about 90 percent of its budget to research; another, Metavivor, puts 100 percent of its funding toward research.

“When we learned how small a part of their annual budget Komen spent on research, despite years of marketing themselves as a cure-oriented organization, it looked like their marketing was misleading,” said Goldstein. “We decided that we needed to inform the public about where the money they’d donated to Komen was going.”

So in 2015 Shapiro and Goldstein established CureKomen.org, "whose aims are to (1) inform supporters of the Susan G. Komen Foundation about the tragically low percentage of their money being spent on research; and (2) to convince Komen to dramatically increase research funding and transparency about how donors’ money is being spent."

During the next few years, CureKomen.org members started showing up at Komen fundraising road races to bring attention to these messages. They partnered with members of METUP, an organization that advocates for increased research and care for people with metastatic breast cancer, whose members—many of them breast cancer patients themselves—also joined in the activities. Unfortunately, Jenessa Shapiro’s cancer could not be stopped; she passed away in 2018.

At a couple of the Komen run/walks, the CureKomen members recorded on video the reactions of racers and other supporters when told that only about 19 cents of every dollar they donated went towards research. You can watch this video on the CureKomen.org website. CureKomen.org also placed Facebook ads that reached more than 100,000 people, and thousands more through Google searches and YouTube videos, said Goldstein.

Is Komen Listening?

Of course, this is hardly the first time someone has criticized Komen. The organization set off a PR storm when it withdrew funding from Planned Parenthood—which it eventually restored after withering public outcry. It’s also been accused of being overly close to corporate sponsors, including those that make unhealthy products. In response to criticisms related to “pinkwashing,” Komen embraced a new set of guidelines around cause marketing in 2012 developed by the New York State Attorney General.

Komen has a track record of heeding its critics. Has it also been responsive to CureKomen.org’s efforts?

Goldstein sees some signs that it has. For example, he said that Komen’s homepage recently displayed new messaging touting the total amount it had given for research during the life of the organization: $1 billion. Also recently, the homepage of Komen’s Los Angeles County chapter was advertising an upcoming fundraising event called the "Susan G. Komen More Than Pink Los Angeles County Walk"—the “More Than Pink” could be Komen’s acknowledgment that they need to do more to stress the impact of its work.

Goldstein says Komen’s tweeting has increased sharply in recent months. One tweet cited the need now for action—not just awareness. That’s what breast cancer activists like those from Metavivor have been telling Komen for a long time. "Kudos to Komen’s marketing people for taking criticism and turning into their own message," said Goldstein.

Questioning Priorities

One of Komen’s longtime initiatives and funding goal has been to encourage women to get mammograms. Catching cancer early, before it has had a chance to grow or metastasize, and might presumably be easier to treat, seems like a great idea. But like many issues in health, the topic is not as clear as you might think. While mammograms are an accepted screening method, they are not perfect, and in the medical community there is discussion about whether they result in a net benefit for public health, or actually cause more unnecessary procedures, worry, and expense.

According to Goldstein, the data on mammograms show that for every 1,000 women screened yearly, one will be saved. Unfortunately, six more whose tests show evidence of cancer will still die of the disease, despite the screening. For those that are successfully treated, it’s obviously still worth it. But here’s where the topic gets fuzzier: for that same 1,000 women screened, six will be overdiagnosed. Those are people who would undergo further tests when, with no medical intervention, they’d never have developed the disease. Research has also shown that mammograms are less effective for women with denser breast tissue, more common for women under 40, but also for some women over 40.

"It’s hard to argue against mammograms because people are treated and survive, and assume their lives were saved by the screening," said Goldstein. "But because of the research, we know that in many cases those people wouldn’t have gotten cancer."

Last year, Komen spent about $93 million on education; Goldstein says Komen does not detail what that spending buys.

This messaging appears to remain in effect. Asked about its support for research,  Susan G. Komen communications director Sean Tuffnell responded via email that the organization is "committed to discovering more effective treatments for the future."

"Susan G. Komen is proud to have invested more than $1 billion in breast cancer research since our founding, far more than any other breast cancer nonprofit outside of the U.S. government," wrote Tuffnell. "Komen is also one of the largest non-profit funders of metastatic breast cancer research, investing more than $210 million in metastatic breast cancer research, including more than 500 research grants and more than 50 clinical trials. This fall we unveiled $26 million in new research grants—70% of which were focused on MBC."

As to the percentage of its annual giving that goes to research, Tuffnell said it was somewhat higher than the 16 to 19 percent that CureKomen’s Goldstein says is shown in its financial disclosures. "While the percentages for each area of our mission may fluctuate year-to-year due to a variety of factors, over our history more than a third (of) our mission spend has been invested in research," wrote Tuffnell.

“They Feel Misled”

Of course, the question is not whether Komen is an important supporter of research—it is. The question is whether the organization, as Goldstein and CureKomen charges, misrepresents itself as a research-first organization when it appeals to donors when by its own claims, it devotes only around 33 percent of its budget for research.

Is a third the right portion of the budget for Komen to spend on research? Would it have made a difference to breast cancer patients if Komen had invested $2 billion or $3 billion into research instead of the $1 billion they cited? Or did the money it spent in other areas do just as much good as any additional research might have? Perhaps there is data to support Komen’s strategy for deploying funds; Goldstein says it hasn’t provided it.

"When people get informed about Komen’s actual spending, where the money goes, they feel misled," said Goldstein. "That’s either going to change how Komen distributes its funding, or people are going to donate to organizations that devote more of their budgets to research, and either one is good."

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