Addressing Disparities, Deploying Research in a Race to Cure
What started as a promise to a dying sister has turned into an international force to fight breast cancer. Today, Susan G. Komen is synonymous with efforts to harness education, advocacy, research and global outreach to improve outcomes and race toward a cure for all forms of the disease.
Ingrid Mayer, MD, MSCI
Earlier this summer, Susan G. Komen CEO Paula Schneider visited Middle Tennessee and met with Nashville Medical News to discuss the organization's bold goals and a new initiative to address disparities. Schneider, herself a breast cancer survivor, was joined by Ingrid Mayer, MD, MSCI, leader of the Vanderbilt-Ingram Cancer Center Breast Cancer Research Program and a Komen Scholar.
Schneider said the organization is rolling out a focused program in 11 cities across the country, including Memphis, that have the biggest disparities in breast cancer death rates for African-American women. In fact, she stated, "Memphis has the highest disparate death rate of any city in the country."
With a tag line of 'where you live shouldn't determine whether you live,' the project's goal is to reduce African-American breast cancer death disparities by 25 percent within five years in the pilot cities. "We've been working in disparities in healthcare for years," Schneider said, but noted the new initiative builds on that foundation. "We are working in a collaborative way with thought leadership in each city," she continued of seeking guidance to understand "the story behind the story" in order to launch the most effective interventions and research projects for each community.
The new disparities project, she noted, was made possible by a grant from the Fund II Foundation. As an aside, Schneider explained Fund II is part of the philanthropic works of Robert F. Smith, who made headlines in May when he announced he would pay off student loans for the Morehouse College Class of 2019.
The project builds off of proof-of-concept work done in Chicago and expands that work to 10 additional cities. After conducting a landscape analysis in Chicago, Schneider said they discovered African-American women were getting nearly as many mammograms as their Caucasian counterparts. However, the death rates were completely disparate. Interestingly, she continued, death rates were about the same in the 1980s and '90s. "But when they got to about 2003, it was at 68 percent more that you died if you were African-American rather than white."
A collective impact study looked at the reasons for the divergent death rates. "It was systemic more than anything else," said Schneider. While there were myriad issues, including financial toxicity that made it more difficult for African-American women to access treatment, one of the biggest issues was in how breasts were being positioned during mammograms and how the imaging studies were read. "So, a lot of it had to do with training," Schneider said of the discovery. Because key findings were missed in the early stages of cancer, African-American women tended to be diagnosed later when the disease was more aggressive.
Partnering with hospitals and other organizations to address the systemic failures and enhance training, the Chicago project showcased how outcomes could be impacted by tailored interventions. "We changed the death rate and brought it down 35 percent in five years," Schneider shared.
Now, those lessons will be applied to other cities. In addition to Chicago and Memphis, the African-American Health Equity Initiative is targeting Atlanta, Dallas, Houston, St. Louis, Philadelphia, Washington, Los Angeles, Oakland, Calif., and Norfolk, Va.
Currently, Komen has established roundtables in each of the expansion cities to lead efforts. Schneider said she anticipates the landscape analysis for each of the pilot cities to be completed by year's end.
For all those diagnosed with breast cancer, Schneider said, "There's a bold goal ... very bold ... and that's to decrease the death rates by 50 percent by 2026." Recognizing the enormity of the task, she added, "If we don't have a North Star, no one will aim for it."
To hit that target, Schneider said there are two sides to the coin. "One is dealing with the cancers that kill," she said. "The second part is disparities in healthcare."
Schneider continued, "There's really nothing that's going to cure cancer but research." However, she noted, even without another medical breakthrough, there is the ability to decrease breast cancer deaths. "You just have to get people to the care that exists today and figure out what the barriers to care are."
The disparities side of the coin is the focus of the new 11-city initiative, and Schneider said the hope is to replicate that work of partnering with thought leaders and organizations in other cities the future. "Ultimately, if we create this business model, and it proves out as (Chicago) proved out, which we anticipate, then we have the ability to be the backbone for a rollout of more cities. It can become scalable," she stated.
Stopping Cancers that Kill
As for the 'cure side' of the coin, Komen supports ... and is supported by ... a robust research effort. Calling the Komen Scientific Advisory Board (SAB) the 'rock stars' of the field, Schneider said the group is led by George W. Sledge, Jr., MD, chief of the Division of Oncology for Stanford University Medical Center, and Nashville's own Jennifer Pietenpol, PhD, director of the Vanderbilt-Ingram Cancer Center (VICC).
In addition to strategic guidance from the SAB members, the organization also relies on the expertise of Komen Scholars, who are leaders in breast cancer research and advocacy. Chosen for their knowledge and contributions to breast cancer research, the select group leads Komen's scientific peer review process and serves as experts for the organization's international network of affiliates. Additionally, the organization helps fund the promising research lines these scientists are investigating.
VICC's Ingrid Mayer, MD, MSCI, was named a Komen Scholar in 2018. "I have a grant to look into a particular type of breast cancer that is very aggressive called triple-negative breast cancer (TNBC). Even though it's very uncommon in the bigger scheme of things - it's about 15 percent of all breast cancers diagnosed in a year - it disproportionately kills a lot of people," said Mayer.
Schneider a 12-year survivor of TNBC noted, "It's the one you don't want to hear you have."
Racing for the Cure
Race for the Cure® events are held throughout the world and are one of the most visible ways Susan G. Komen raises funds for breast health education, outreach, screening, treatment and research. Recently, Komen has rolled out the More than Pink Walk™, which is part of the Race for the Cure series but focuses on walking instead of running.
Nashville and Chattanooga are two of 26 cities debuting the new More than Pink Walk this fall. Susan G. Komen Central Tennessee is hosting the Nashville area event on Saturday, Oct. 26, at Maryland Farms. For more information on the walk and other area resources, visit KomenCentralTennessee.org.
"It's an aggressive tumor with very few options," Mayer concurred. She explained the 'triple-negative' designation means the cancer is negative for the hormones estrogen and progesterone and the protein HER2 that drive most other forms of the disease. The most common type of the cancer, and one that is often seen as women age, is estrogen-dependent breast cancer, which Mayer said makes up about 65 percent of diagnosed cancers annually.
"The second largest group is HER2-positive breast cancer, which is about 30 percent give or take," she continued, noting there is some overlap with estrogen-positive cancers. "This is a cancer that I would argue may be the one we cure first, even with metastatic disease, because there is a driver for that cancer that is this HER2 gene."
Mayer added, "With the ability to use targeted treatment for this cancer, we have tremendously impacted how often people recur." Even though HER2-positive cancer is as aggressive as TNBC, she said the effectiveness of treatment has created a "good problem of not being able to enroll people in metastatic trials because they don't recur ... so that's an awesome problem to have."
A prolific researcher, Mayer has served as principal investigator on more than 80 clinical trials and leads VICC's Breast Cancer Specialized Program of Research Excellence (SPORE) alongside Pietenpol. Currently, she is principal investigator for a large national TNBC clinical trial.
Unlike HER2, the lack of targets makes it particularly difficult to treat TNBC. "Historically, most of these women have been treated with chemotherapy, which works well to a certain extent," Mayer said, but added that recurrence is not uncommon even in those with stage 1 or 2 TNBC.
Komen is supporting her work in profiling triple-negative cancers. Mayer serves as principal investigator on a large National Cancer Institute study (EA1131), which looks to enroll 750 nationwide, to compare different types of chemotherapies for patients at high risk of recurrence for breast cancer. "We are profiling all those tumors and serially collecting blood from all those women to detect what are the possible mutations or possible findings in the tumor DNA," Mayer said. "Can we find something that is actionable?"
While she continues to search for answers to unlock the TNBC mystery, Mayer is also involved in a study testing the drug ifetroban in patients who have completed cancer treatment for one of five types of cancer, including TNBC, and who show no evidence of disease but are at high risk of recurrence. Instead of "watchful waiting" to see if the cancer returns, the hope is to develop therapies that target tumor cell metastasis to move patients into an era of "proactive prevention."
Schneider said exciting new research lines, effective policymaking, education and outreach are all powerful tools in the quest to stop breast cancer. "There's a lot to be said about women in pink with pitchforks," she laughed. "The power of Komen and the power of the brand is everyone understands what our mission is."
The Powerful Story Behind the Organization
After fighting breast cancer for three years, Susan G. Komen succumbed to the disease in 1980 at the age of 36. Before Komen's death, however, Nancy G. Brinker made a promise to her dying sister to do everything in her power to find a way to stop breast cancer. In 1982, the Susan G. Komen® organization launched with $200 and a shoebox filled with the names of potential donors. Today, the global nonprofit has invested nearly $3 billion to fund the fight in more than 60 countries around the globe.