Women With Breast Cancer Protest at Komen NYC Run

First-of-Its-Kind Demonstration by Patients

Nick Mulcahy and Liz Neporent

Disclosures

September 08, 2019

A group of women living with metastatic breast cancer, some wearing hospital gowns and rolling  IV poles, and their allies protested today at the Susan G. Komen "Race for the Cure" event in New York City, calling for the organization to devote more of its revenue to breast cancer research — an activity essential to any cure.

Women protest for more breast cancer research dollars from the Susan G. Komen Foundation during its New York City Race for the Cure event. John Rodriguez/Medscape

 

Currently, Komen allocates about 20% of its annual budget to research grants, which is nearly two-thirds less than what it spends on "public health education."

The research funding proportion is far lower than some other high-profile breast cancer nonprofits, which invest as much as 80% to 90%.

However, Komen's mission is multipronged and involves "advancing research, education, screening, and treatment," according to the organization.

The demonstration, at the race's Central Park start line, represents the first time that breast cancer patients have protested at a Komen race, the group's iconic breast cancer fundraiser, the organizers note.

"It's research that's going to save lives…not awareness, not public health education," said demonstrator Susan Rahn, of Rochester, New York, who lives with metastatic disease. She is acting president of MET UP, the activist group that helped to organize the protest.

"Most Komen supporters have no idea how little of the money they raise goes into research," said demonstrator Noah Goldstein, PhD, from the University of California, Los Angeles, reading from an information card that protesters handed out at the Komen race. His wife, Jenessa Shapiro, died from breast cancer in 2018.

Last year, Goldstein, a social scientist, interviewed participants at the Komen Race for the Cure in Phoenix, Arizona. "When supporters learn the [research] funding numbers are low, they not only are upset at Komen, some of them feel bamboozled," he told Medscape Medical News.

He wants to push Komen into "realigning" their budget. To do so, Goldstein and collaborators have hatched the "Cure Komen" protest movement, which kicked off today in Central Park and runs into October. The New York City protestors also wore black t-shirts with "Cure Komen" taglines.

Today's demonstration is also the fulfillment of the vision of one of MET UP's founders, Beth Caldwell, who died from metastatic breast cancer in 2017 and who criticized Komen's research funding levels in 2015.

"As an organization that pitches itself as 'for the cure,' they are not doing enough to actually seek the cure," she summarized, echoing the current protesters.

Medscape Medical News interviewed 10 racers at the event today, only one of which was a breast cancer survivor, and found that a minority were concerned about Komen's research funding allocations. However, Shuli Gutmann, 55, who directs a senior center in Manhattan and has no breast cancer history, said, "I do think there needs to be a large percentage of money going towards research."

Breast Cancer Research Funding Levels

In 2018, the Susan G. Komen Breast Cancer Foundation awarded $32 million in research grants, which is 19% of $169 million in expenses, according to its most recent financial statement.

By comparison, the Breast Cancer Research Fund (BCRF) says that 90% of its annual budget is devoted to funding research projects, including in metastatic disease. Currently, the organization is funding about 300 projects. In 2018, they dispersed $77 million in grants, which is more than 90% of its total expenses.

At the Dr. Susan Love Research Foundation, 82 cents on every incoming dollar goes to fund research and research-related programs, including the organization's well-known Army of Women project, Love told Medscape Medical News. In 2018, the foundation expended $1.9 million related to research as part of its $2.4 million operating expenses, according to a financial statement.

In all three cases, the calculations exclude the cost of fundraising as part of the expenses.

Notably the BCRF and Love's organization are singularly focused on research, while Komen's has multiple missions, including education.

Runners line up at the start of the Susan G. Komen Race for the Cure in New York City. John Rodriguez/Medscape

More than half of Komen's 2018 expenses ($93.6 million) were spent on "public health education," Goldstein observed, decrying the much lower level of scientific research funding ($32 million; 19%). Medscape Medical News asked Komen for the specifics of its public health education spending but had not received an answer as this article went to press.

In response to a query about its research spending, a Komen spokeperson last week told Medscape Medical News that, cumulatively, Komen grants bring "its total research investment to $988 million to date – the largest nonprofit investment outside the US government."

Nevertheless, Komen's research funding levels have been criticized in the past.

A 2012 Reuters report indicated that the Texas-based organization had, from 2003 to 2011, cut by nearly half the proportion of the money spent scientific grants to researchers seeking to understand the disease process and treatment solutions.

The proportion of the annual budget devoted to research grants fluctuated from a high of 29% to a low of 15% during the analysis period. A breast cancer blogger quoted in the report called the lower figure "shockingly small."

Protest Organizer Focused on Cure

The organizer of today’s protest, MET UP, was founded to address stasis in metastatic breast cancer research efforts, according to its initial mission statement.

"MET UP is…committed to direct action for a viable cure for breast cancer," reads the statement.

The group observes that in the last 40 years the annual number of metastatic breast cancer deaths "has not changed significantly" in the United States. The same is true for the average survival rate of 3 years.

"We have spent almost half a century trying to fund research for a cure, and what we got instead was pink ribbon campaigns," reads the MET UP website.

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