DESPITE THE SOCIAL UNREST and impact of the pandemic in 2020, breast cancer survivor Maimah Karmo felt hopeful as December rolled around. As the founder and CEO of the Tigerlily Foundation, a patient advocacy nonprofit based in Reston, Virginia, Karmo would be sharing her perspectives on racial disparities in breast cancer before physicians and researchers at a virtual special session of the 2020 San Antonio Breast Cancer Symposium (SABCS), one of the largest scientific conferences dedicated to breast oncology. Looking back over the year’s protests against the killings of George Floyd, Ahmaud Arbery and Breonna Taylor as well as the disproportionate burden of COVID-19 on minority communities, Karmo, a Black woman, couldn’t help but feel that researchers would be more open to listening.
Karmo had attended SABCS previously, and in 2019, the Tigerlily Foundation provided scholarships to 20 Black women to attend the conference in person. That same year, not far from the SABCS conference site, Tigerlily hosted its own event that brought together experts and patients to talk about metastatic breast cancer and health disparities. During the half-day event, Karmo frequently described how she felt she did “not have a place at the table” at medical conferences. Undeterred, she said, she learned to figuratively bring her own table and chairs to amplify the voices of Black women and metastatic breast cancer patients. A year after Tigerlily’s event, Karmo felt calm and focused as she addressed attendees of the 2020 SABCS via Zoom as part of the official program.
“As a Black woman and a Black patient, I face systemic barriers while I work as a Black patient leader to end those barriers,” said Karmo. She ran through a list of transgressions against Black people, including lack of access to clinical trials, a history of abuse in health care and medical research, and the far-reaching effects of redlining, a discriminatory practice that denies certain ethnicities or races access to housing in some neighborhoods, which creates barriers to quality health care access. “As a Black breast cancer patient, I can say this: The foot is on our neck every day. That foot equates to unequal access to treatments and trials, microaggressions, and being harmed by a system that took an oath to heal us. This is the reality of living with cancer while being Black. Today, however, ushers in a new day.”
Health inequities have been described in public health literature for decades and have frequently been the topic of medical conferences and working groups—whether focusing on the disparate allocation of health resources in rural versus urban areas or different cancer outcomes among various ethnic and racial groups.
Data from the American Cancer Society suggest that overall relative five-year survival rates have improved for most people with cancer in the U.S., including Black people. Still, Black men and women have the highest death rates and lowest survival rates of any race for most types of cancer. Black women are 40% more likely to die of breast cancer than white women. Black men are more than twice as likely to die of prostate cancer as white men. Certain cancers, such as multiple myeloma and stomach cancer, disproportionately affect Black people compared to white people.
These and similar statistics have long been known, but the protests against police brutality and racial injustice have prompted some to look more closely at racism not just in policing, but in health care systems as well.
“I think the thing that I’m the most encouraged by and the most proud of is that there are cancer center directors and other people with professional organizations that are cancer-focused that are actually wanting to have the conversations,” says Robert Winn, the first Black director of the VCU Massey Cancer Center in Richmond, Virginia, and one of only three Black doctors ever to direct an NCI-designated cancer center.
Naming the Obstacles
Research starting in the 1990s began to highlight differences between Black and white people in their access to cancer treatments, says Sam Cykert, an internist and health services researcher who is a professor of medicine at the University of North Carolina, Chapel Hill. Some of the first published data, for example, indicated that Black breast cancer patients were not completing treatments at the same rates as white patients.
In 2010, Cykert and his colleagues published a prospective study in JAMA that analyzed data from 386 patients who had early-stage lung cancer across five health systems in North and South Carolina. The researchers noted that surgical rates were higher for white patients, at 66%, than they were for Black patients, at 55%. Moreover, only 13% of Black patients who had two or more other serious conditions, called comorbidities, had surgery to remove the tumor, which can be curative, compared with 62% of white patients.
“[The study] demonstrated that physicians have an implicit bias in decision-making of comorbidities for cancer patients, so physicians and teams were interpreting comorbidities differently in patients that weren’t like them,” says Cykert. The study also noted that Black patients who did not have a regular source of care, such as a primary care physician, were far less likely to have surgery than those who did.
To find a solution for these issues, Cykert and his colleagues presented their findings on disparities to the Greensboro Health Disparities Collaborative, a local group of community members who promote the understanding and reduction of racial and ethnic health disparities. Together, researchers and community members—borrowing lessons from the civil rights movement and other movements for social change—stressed that any solution would need to encourage transparency and accountability by health care systems and providers.
Using these points as guiding principles, Cykert and researchers conducted the ACCURE study (short for Accountability for Cancer Care through Undoing Racism and Equity) at the University of Pittsburgh Medical Center’s Hillman Cancer Center and Cone Health Center in Greensboro, North Carolina. The approach used electronic medical records to track whether patients were making milestones, such as follow-up surgeries, in allotted periods of time. Nurse navigators received alerts if these milestones were being missed and followed up with the patient or the clinical care team. In addition, care team members received reports on treatment completion rates so they could see data broken down by race.
The study—which included early-stage lung and breast cancer patients—showed that the ACCURE approach practically eliminated disparities between white and Black patients. Treatment completion rates for lung and breast cancer patients increased from 79.8% to 88.4% in Black patients and from 87.3% to 89.5% in white patients. When the researchers applied the same approach in a five-center study of early-stage lung cancer patients, they got even more striking results: Treatment completion rates went from 78% to 95% in white patients and 69% to 96.5% in Black patients.
“Basically, a system that identifies if patients are coming for treatment and whether they are progressing on treatment ended up not only helping Black patients, but also helping white patients as well,” says Cykert. “And we’ve shown the approach works twice.”
A Matter of Asking
Research suggests that when Black cancer patients are offered enrollment in clinical trials, they join at similar rates to white patients.
Research suggests that more than three out of four patients with cancer do not have access to a clinical trial due to barriers—with 50% of patients not having a trial available for their type of cancer at their treatment facility, and an additional 21.5% being ineligible to participate in a trial for a variety of reasons, including having additional health issues that exclude them from trials. These barriers may be more pronounced for Black cancer patients.
However, a recent review published in the March 2021 Journal of the National Cancer Institute suggests that when clinical trials are available and offered, Black patients will agree to participate at rates similar to white patients. In fact, 58.4% of Black cancer patients who were asked to participate in clinical trials said yes, compared with 55.1% of white cancer patients who were asked.
“[This finding] undermines the idea that existing disparities that have been observed are somehow due to the patients themselves,” says Joseph Unger, a study author who is a health services researcher and biostatistician at the Fred Hutchinson Cancer Research Center in Seattle and the SWOG Cancer Research Network. “In fact, it suggests one way to help alleviate racial and ethnic barriers to access to treatment trials is simply to ensure the patients themselves are offered a trial.”
A study by Unger and others suggests that federally funded trials appear to do a better job of including minority group members than trials funded by private industry. The research, published in the August 2020 JNCI Cancer Spectrum, analyzed 358 clinical trials and found that 2.9% of participants in pharmaceutical industry-sponsored trials were Black, while 9% were Black in trials run by the SWOG Cancer Research Network, which is part of the National Cancer Institute’s National Clinical Trials Network. For comparison, Black people make up approximately 12% of the U.S. cancer population.
“There is still a bit of a disparity between the NCI-sponsored trials and the U.S. cancer population, but it’s nowhere near what goes on in pharma,” says Unger.
A Shifting Perspective
Providing equitable health care requires creating systems that ensure each patient has access to care and treatments, says Matt Manning, an author of both studies and the chief of oncology at Cone Health, which has adapted the ACCURE approach for continued use. However, the effort requires a shift in how health care systems think about patients. “In the past, we would use a term of noncompliance for patients who have a history of not showing up for appointments, and we put the burden on patients to be compliant or not,” Manning says. “Now, we are turning that around and saying that we didn’t create great enough access for the patients that weren’t able to get here.”
Shonta Chambers served as a co-chair of a cancer equity working group that published recommendations in February 2021 to help health care providers and policymakers work toward more equitable cancer care. The working group was a collaboration of the National Comprehensive Cancer Network, the American Cancer Society Cancer Action Network, and the National Minority Quality Forum.
“We tend to think that we can pull somebody out of their community, put them in the bubble of the health care system and they’re going to immediately be able to do everything we say, because we’re not thinking about the role of community in the context of health care delivery,” says Chambers, executive vice president of health equity and community engagement at the Patient Advocate Foundation, based in Hampton, Virginia. One recommendation of the working group was to recruit and train community-based patient navigators who can identify barriers such as food insecurity, lack of access to transportation and low literacy to help patients connect to the services they need.
Hospitals can also train nonmedical or lay navigators who do not have a background in social work or nursing to connect patients to services once they start treatment, says Edward Partridge, a gynecologic oncologist and former director of the O’Neal Comprehensive Cancer Center at the University of Alabama at Birmingham (UAB). Lay navigators become involved after a patient has already spent time in the hospital, he says, and they are focused on helping to prevent unnecessary readmission by addressing likely barriers, “whether with going to their next appointment, taking care of their colostomy, adhering to their medications or waiting too long when they’ve been vomiting from chemotherapy before they call the clinic.”
Partridge has dedicated much of his career to disparities research and has published several studies that show success using patient navigators from the community, including a program in which volunteers went into communities to talk about mammography and cervical cancer screening, and an effort in which trained community health workers helped cancer patients from rural areas get treatment at urban cancer centers. His research revealed that using lay navigators was associated with fewer patient hospitalizations, reduced ER visits and lower costs for the UAB Health System Cancer Community Network.
Patient navigation is among the list of recommendations contained in a framework for health equity published in the March 1, 2021, JCO Oncology Practice. Karen Winkfield, a radiation oncologist and a member of the working group that wrote the guidance, stresses the importance of accurately assessing patients’ needs and their barriers. Winkfield is the executive director of the Meharry-Vanderbilt Alliance, a collaboration between Meharry Medical College, a historically Black medical school that was the first of its kind in the South, and Vanderbilt University Medical Center, both in Nashville. Prior to her role at Meharry-Vanderbilt, she and fellow researchers at Wake Forest Comprehensive Cancer Center in Winston-Salem, North Carolina, developed an acuity of needs scale, which assessed patients based on social determinants of health as well as ethnic and racial factors to help predict whether services would be needed.
Another important ingredient of initiatives designed to reduce disparities is measuring results of the interventions, says Winkfield. “It’s one thing to look at a large database and say, ‘Oh, look, African Americans are dying of cancer,’ or ‘Oh, look, African Americans aren’t being screened for cancer,’ but what do you do in between, what do you do with that information?” she asks.
In addition to stressing clear outcome measures, Winn also focuses on getting out in the community. To that end, the VCU Massey Cancer Center director has been holding Facts and Faith Fridays, which are weekly teleconferences with local Black church leaders, since the beginning of the pandemic. The sessions offer education and information about COVID-19, safety precautions and vaccine facts. “With all of the misinformation, they needed a trusted voice,” he says, noting that cancer incidence and outcomes tend to be intertwined with other public health issues, including COVID-19. “To me, it’s all related. We know that poor housing leads to increased risk in cancer. We know that COVID is going to likely have a negative impact and increase poorer outcomes of cancer because people haven’t gone or are scared to go for screening, so all these things are more interconnected than we think.”
Learn about individual efforts to advance equitable cancer treatment and health care access.
While Winn and others continue to tackle cancer disparities from a hospital setting, Karmo offers platforms for dialogue among Black women, including physicians and scientists, through her nonprofit. She encourages people to sign the Tigerlily inclusion pledge, a commitment made by the signer not to participate in panels, speaking engagements or other research initiatives unless a Black woman is included, and to use individual privilege to work toward health equity. “It’s really not as complicated as people think. If each person decides to do one just one thing to eradicate disparities, and they do it exceptionally well, that’s all it takes,” Karmo says.
Winn has a reputation for being a cautious optimist, but he also knows progress takes time. He recounts how his grandfather had to leave Alabama “under the cover of night for fear of being lynched” in the 1940s, and how his grandparents vowed never to return to the South because of social unrest and fear.
“Virginia is ground zero,” he says. “I mean it’s not just my history. It’s the history. It’s where slavery started. It was the seat of the Confederacy. So, to come back to the same place and be embraced not only by African American faith-based leaders, but then be embraced by people in tiny rural towns who say, ‘Doc, you’re doing a good job. Thanks for explaining the disparities to me and letting me know I’m included in those disparities as a person living in a rural community.’ The fact that I could have folks who are very rooted in the South, in Southern history and traditions, say, ‘Hey, Doc, I don’t really care what persuasion you are, but you’re eradicating cancer and that matters to me,’ says that the world is changing, just a little bit.”
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