Screening higher-risk women with evidence-based guidelines, identifying functions that provide greater access to genetic testing, and removing barriers to clinical trial participation are key themes presented during the ACS Clinical Congress
CHICAGO (October 27, 2021): Although awareness and research activity is growing, much work still needs to be done to ensure equity in the diagnosis and treatment of breast cancer in Black women, according to an expert panel who spoke earlier this week at the virtual American College of Surgeons (ACS) Clinical Congress 2021.
During the October 25 panel session, "Improving Breast Cancer Outcomes in Black Women: Time for a Change," physician panelists spoke about barriers in access to screening and treatment, current recommendations for screening including risk-assessment models, and modalities and frequencies recommended for African American women. Research initiatives that address disparities and solutions were also part of the dialogue.
Cancer screening for higher-risk women
When the America College of Radiology (ACR) last revisited its breast screening guidelines, the review involved separating average-risk from higher-risk women. The two populations had never been looked at separately before for this type of evidence review, resulting in the ACR publishing two articles one year apart for average-risk (2017) and higher-risk women (2018). The data examined was different for the two groups and so were the modalities, explained Debra Monticciolo, MD, FACR, past-president of the American College of Radiology, Moreton Centennial Chair in Radiology, vice chair of the department of radiology (for research) and section chief of breast imaging at Baylor Scott & White Medical Center-Temple, Texas. "Where mammography is the mainstay for the average risk patient, those at higher risk are going to have supplemental screening and it's mostly centered on MRI [magnetic resonance imaging]."
The higher-risk evidence review elucidated that there were already known populations of women who fall into that category: genetic mutation carriers, those with a strong family history of the disease, and those with a history of chest radiation at a young age. Good data, as well as agreement on supplemental screening schedules, were already in place for these women, leading to the expansion and inclusion of additional populations, explained Dr. Monticciolo. "We also knew about higher occurrence of the BRCA mutations in women of Ashkenazi Jewish descent. What was not widely known was that this is also true of African American women. I was actually stunned to realize that this risk was not really included in any screening guideline up to that point."
While analyzing further research, other findings strongly supported Black women being placed in a higher risk group: they have an inherited mutation about 22 percent of the time (about double of what it is for white women), a higher death rate from breast cancer, and at least a two-fold higher risk of aggressive tumors such as triple negative breast cancer, she reported. With robust data to support separate screening guidelines for higher risk women, the ACR published its research-based initial screening recommendations for these women in the Journal of the American College of Radiology in March 2018.
More recent research with her colleague, R. Edward Hendrick, PhD, was published in the journal Cancer in August 2021 and involves important information on cancer incidence and mortality in minority women. Using SEER 21 data, Hendrick and Monticciolo showed that minority women in the United States are 72 percent more likely to be diagnosed with invasive breast cancer under the age of 50, 58 percent more likely to have advanced breast cancer under age 50, and 127 percent more likely to die of breast cancer under age 50 than non-Hispanic white women.
Black women are at higher risk and need effective screening strategies targeted to their specific needs. "Waiting until age 45 or 50 to screen will adversely affect Black women and minority women in particular. We need to assess their risk by age 30 and get them into screening by 40. And, finally, the screening guidelines really need to be more inclusive," Dr. Monticciolo said.
Genetic testing access
Access to genetic testing is a barrier for minority women. "Currently, we have more demand for testing than we have genetic health professionals able to meet this demand" said Tuya Pal, MD, associate director for cancer health disparities, Vanderbilt-Ingram Cancer Center, Nashville. Dr. Pal recruited women at or below age 50 through the Florida State Cancer Registry and found only one-third of Black women had undergone testing for the inherited breast cancer genes, BRCA1 and BRCA2, compared with almost two-thirds of Hispanic and non-Hispanic white women.
"When we consider care delivery for inherited cancer testing, we really need to think about it at multiple levels—include the individual, the health care provider as well as the health system, including insurance coverage," said Dr. Pal, explaining that once patients are identified for genetic testing, there needs to be a clear pathway for them to access genetic counseling and testing.
Her current work involves leading development and deployment of a 12-minute interactive video to inform and educate people about genetic testing for inherited cancer. Overall, the video has doubled knowledge scores across literacy levels, and most people in the study felt empowered to make a testing decision after participation. Moreover, the project provides a means to collect survey data from the patient about personal and family history to then be reviewed by a genetic counselor to provide an assessment to the treating provider who orders genetic testing.
From a broader perspective, Dr. Pal highlighted that beyond testing for single inherited cancer susceptibility genes, the field is moving towards testing multiple genetic regions to generate a Polygenic Risk Score. "The vast majority of genome-wide association studies, which represent the foundation of Polygenic Risk Scores, have been done in individuals of European descent." This imbalance results in our inability to accurately predict risks in Black individuals, which may further widen care disparities. Furthermore, it represents a lost opportunity to discover new genetic associations, she explained, "the more populations that we study, the more opportunities we have to figure out science and benefit all populations."
Participation in clinical trials
Black and Hispanic patients are 20-50 percent less likely to participate in clinical trials, said Oluwadamilola "Lola" Fayanju, MD, MA, MPHS, FACS, who has studied trial participation and is chief of breast surgery for the University of Pennsylvania Health System and surgical director of Penn's Rena Rowan Breast Center, Philadelphia. "We know that underrepresentation happens, even in cancers with higher prevalence in people of color, such as multiple myeloma," she said. Despite the 1993 NIH Revitalization Act—passed by Congress to include more women and racial/ethnic minority patients in NIH-sponsored research—racial/ethnic minorities continue to be disproportionately enrolled in most clinical trials for many disease sites.
Further, there are certain types of breast cancer more commonly found in women of color, particularly triple-negative breast cancer among Black women and HER2-positive breast cancer among women of Asian ancestry. Enrolling more women from both groups in trials to study these types of breast cancer provides opportunity to elucidate the pathophysiology of such diseases, she said. Trial results could open the door to new opportunities to target particular molecular subtypes for treatment. If diverse trial participation is not prioritized, she said, "Not only are we potentially in danger of not adequately treating breast cancer in women who have some of the most aggressive forms of the disease, but we are also endangering our ability to better understand the disease and better treat it across all kinds of people."
There are multiple complex factors that contribute to under-participation in trials, including a significant interaction noted between income and race/ethnicity. "We found that high-income Black patients were 50 percent less likely to participate than lower-income Black patients," she said. Thus, employing diverse, multi-pronged strategies for improving trial participation are key steps for moving forward.
In the context of an increasingly diverse U.S. population, Dr. Fayanju observed that "if we only conduct research that is effective and seems to be generalizable enough in a minority of the population, we simply won't be doing good research or practicing good medicine." Barriers in clinical participation can be addressed by "changing the players," she suggested. This transition can be achieved by prioritizing diversity in the design, deployment, and dissemination of clinical trials, along with investigators' considering the diversity of their collaborators across the dimensions of diversity including gender, race, ethnicity, methodology, and type of institution (e.g., historically black colleges and universities).
Closing remarks
At a post-session press briefing on October 26, panel co-moderator Anita Johnson, MD, FACS, chief of surgery and director of breast oncology at Cancer Treatment Centers of America, Atlanta, said, "What we know for sure is that it is time for change. We must act on the numbers to address breast cancer—and other health care—disparities in Black women, which is multifactorial. We need to move beyond discussion. Once we fix this issue for Black women, we fix it for all women."
"Breast cancer survival rates have increased dramatically through advances in risk assessment, early detection, and treatment. Continued outcome improvements are hampered by ongoing disparities. This session has demonstrated that efforts to eliminate the disproportionately high breast cancer mortality burden of African American women are doomed to failure unless we dismantle the systemic racism in U.S. health care that creates barriers to screening, genetic testing, and clinical research," said moderator Lisa Newman, MD, MPH, FACS, FASCO, director of the breast program for the Weill Cornell Medicine-New York Presbyterian Hospital Network, New York City.
