Progress on Breast Cancer Hasn’t Been Evenly Distributed. This Funder’s on the Case

While the collective efforts of researchers, public health advocates and funders have contributed to significant strides in reducing the cancer death rate over the past 30 years, progress has not been evenly distributed. Some demographics are more susceptible to getting certain cancers or have higher death rates compared to other groups. For example, according to the American Cancer Society, Black people have the highest death rate and shortest survival of any racial/ethnic group in the U.S. for most cancers.

One of the big themes in IP’s State of American Philanthropy white paper on giving for cancer research is how funders are exploring and addressing the factors that drive health disparities, including socioeconomic status, social environments and healthcare access, and risk factors like tobacco use, UV exposure and body weight. Funders remain committed to medical research — our brief devotes a whole section to advancements in immunotherapy and precision medicine — but also recognize that by focusing on equity and access, they can reduce deaths and prolong lives even in the absence of major clinical breakthroughs.

I’ve been in communication with key funders in the cancer space to keep tabs on how their work has progressed since we published the brief. Today, we’re checking in with Kelsey Hampton, senior manager of Mission Communications at the Dallas-based Susan G. Komen, one of the most well-known national organizations backing research — and other activities — to prevent and cure breast cancer. 

An archetypal patient advocacy organization

Komen’s namesake, Susan Goodman Komen, died of breast cancer in 1980. Two years later, Komen’s younger sister, Nancy Brinker, established the Susan G. Komen Breast Cancer Foundation, which has since invested over $1 billion in breast cancer research.

Komen isn’t a “pure” research funder. Instead, we classify it as a “patient advocacy organization” because it complements research with a broader set of activities funded by its donors — like education, outreach and advocacy. For example, in 2016, Robert F. Smith’s Fund II Foundation made a $27 million grant to Komen’s African American Health Equity initiative, which aims to reduce the mortality rate among Black breast cancer patients through education.

According to its Form 990 for the fiscal year ending March 2022, Komen’s parent organization received $70 million in contributions and $25 million via fundraising events. With this support, Komen aims to narrow disparities with an approach that bankrolls research, but also seeks to identify the root causes of inequities in health outcomes, educate key demographics, and provide patients with access to care.

Community outreach and care

A few years ago, Komen researchers took a closer look at the top U.S. cities where health inequities and deaths from breast cancer are the highest, particularly among Black women, who are at least 40% more likely to die from breast cancer than white women. They concluded that Black women were often ignored by healthcare providers and faced significant barriers to care.

Komen compiled these findings in a 2021 report titled “Closing the Breast Cancer Gap: A Roadmap to Save the Lives of Black Women in America.” For example, the report showed that the breast cancer mortality rate for Black women is higher than that of white women in nearly every county in the Atlanta metro area. “While Black women are more likely to get screened, they’re also more likely to die due to such barriers as economic insecurity, lack of adequate insurance and poor access to high-quality care,” the report notes.

Since publishing the report, Komen “has turned its findings into action so that everyone gets the care they need regardless of age, race, gender, socioeconomic class or any other factor,” Hampton told me via email. 

Consider, for example, how Komen engages people in Black communities across the U.S. and Canada. Recognizing that for many of these individuals, houses of worship are what Hampton calls “safe havens and a vital space for community and fellowship,” Komen developed Worship in Pink, a grassroots community education program that trains individuals to share breast health education in their faith-based circles.

“[Worship in Pink] Ambassadors provide members of their communities with vital information about breast health and Komen’s programs and services, while also creating a compassionate support network and honoring those who have faced breast cancer,” Hampton said. In the past year, Worship in Pink recruited 208 new ambassadors and reached more than 38,000 participants at congregations in 28 states and Canada.

In addition, Komen’s Patient Care Center provides individualized, direct patient care across the breast health continuum. People contact the Komen Breast Care Helpline and are immediately connected to a patient navigator who can provide emotional support, information and education. “The PCC’s patient navigators help break down barriers by guiding people through the complex healthcare system and stay with people for as long as they need us,” Hampton said.

“Better, more inclusive research”

This brings us to Komen’s grantmaking. “We must make progress on the rate at which people of color are dying from breast cancer to achieve health equity,” Hampton said. “And that requires better, more inclusive research, and more effective treatment.” According to Komen’s most recent annual report, the organization committed $19.3 million toward research in fiscal year 2023. Nearly 40% of those dollars were earmarked for “addressing solutions to inequities in breast cancer.”

Over its history, Komen has been criticized for a number of things — among them, the idea that donors may feel misled about the extent to which the organization devotes its budget to research funding (see our reporting on the topic from 2019). These days, as I’ve laid out, Komen is fairly transparent about the fact that research is only one aspect of its work, one that falls under a more “holistic” umbrella that includes education and access to care, and addressing the root causes of inequities in breast cancer outcomes.

Looking at Komen’s audited financial statement from the fiscal year ending March 31, 2022 (the most recent available), “research” accounted for about $24.9 million of the organization’s expenses, while the “patient care” bucket was much larger at over $87.7 million. “Advocacy” made up the remainder at about $2 million.

Returning to the most recent annual report, Komen highlighted its “A Supplement to Promote Inclusion for Research Excellence” (ASPIRE) grants, which provide funding to established breast cancer scientists to support and mentor research trainees from communities historically underrepresented in biomedical research. 

The award is up to $100,000 per year to cover a trainee’s salary for one or two years. Applications closed on November 1; Komen will notify awardees on or around April 15, 2024. “By supporting these promising trainees early in their research careers,” Hampton said, “Komen seeks to ensure that a diverse group of highly trained scientists who reflect the communities we serve will emerge as the next generation of leaders in breast cancer research and end breast cancer forever.”

Hampton also alluded to another big takeaway from our white paper on giving for cancer research: funders’ growing interest in collecting and sharing patient data to accelerate the development of treatments. 

“To find the cures for breast cancer that serve everyone’s unique breast cancer biology,” she said, “we need data that represents the diversity of the entire breast cancer community.” In response, Komen launched ShareForCures, a breast cancer research registry that collects health information from current and former breast cancer patients to build a resource that can help scientists discover cures for breast cancer faster. 

Add it all up, and these efforts showcase a funding approach that is much in line with a lot of health research philanthropy these days — that is, Komen is training attention and dollars on demographic disparities in outcomes and care. Keeping in mind some of the criticism around Komen over the years, it’s still worth asking to what degree funders should prioritize research versus things like education, advocacy and access to care. But the disparities and gaps are stark enough to justify the increased attention.

“To make the progress that’s needed in curing all types of breast cancer, we must make it easier for people to get the care they need,” Hampton said. “Susan G. Komen is taking action across the country to close the access gap, close the mortality gap and close the diversity gap in lifesaving research.”