Tamiko Byrd was only 43 when she was diagnosed with stage 4 breast cancer in October 2015.
The diagnosis shook Byrd, who had spent years as a fitness instructor and health educator in underserved Black communities, to her core. So did the prospect of navigating cancer treatment. Byrd had just moved to Houston for graduate school, had kids to take care of, and also needed to keep her job as a Xerox technician, which gave her health insurance.
“I was petrified,” said Byrd, who is Black. “I was in a new city. I had no savings. I wondered how can I afford this? How am I going to take care of my young children? How am I going to live? Am I going to live?”
Within two weeks of diagnosis, Byrd started chemotherapy sessions, which left her extremely weak, tired, and physically ill. Although she was able to remain on disability leave to complete her treatment, her car was repossessed, which meant riding the bus for 25 minutes as opposed to a 10-minute drive to get to her chemotherapy sessions. After a long course of treatment, doctors declared her cancer-free in December 2016.
But Byrd still wasn’t well enough to go back to work — and ultimately lost her job and health insurance that January. “I just couldn’t do it,” Byrd said. “I didn’t have the strength.” Byrd, who was then primarily surviving on student loans, missed a year of medical appointments until she was eligible for Medicaid in 2018.
Her experience, in some ways, mirrors the challenges many Black women face after a breast cancer diagnosis in the U.S., experts say. A recent analysis found that several barriers to health care meant that more Black women delayed initiating treatment after a breast cancer diagnosis, and also had a longer treatment period on average than white women. That can have wide-ranging — and devastating — consequences.
“If it takes longer to get treated, that can delay folks in getting their lives back on track and moving forward,” said Melissa Troester, an epidemiology professor at the University of North Carolina at Chapel Hill and co-author of the new study. “These differences have a profound effect on lives.”
There’s a vast body of research showing that Black women are more likely to die of breast cancer than other groups, despite having similar rates of incidence overall. To dig into potential health care-related drivers of that disparity, Troester and her colleagues assessed the course of care among 2,841 Black and white breast cancer patients in North Carolina. They found that while low socioeconomic status was associated with treatment delays among white women, treatment delays were high at all levels of socioeconomic status among Black women.
The study pinpointed three specific issues associated with prolonged breast cancer treatment: lack of insurance, transportation challenges, and financial strain, which is compounded by the wealth gap between Black and white families in the U.S., experts say.
“We know cancer bankrupts well-resourced people,” said Oluwadamilola Fayanju, an assistant professor of surgery and population health sciences at the Duke University School of Medicine. “With that wealth gap, there is no way most [Black] people can financially rebound from cancer treatment.”
Those financial strains can also be exacerbated when a patient is underinsured or uninsured; an estimated 10% of Black individuals in the U.S. are uninsured, for instance, compared to 5% of white individuals, according to a recent report by the U.S. Census Bureau. And even when people have adequate insurance coverage, “the copayments that patients have to pay are also very great,” Fayanju said.
Even getting to a hospital or clinic for radiation, chemotherapy sessions, or regular checkups in itself can be a challenge for some patients. For those relying on public transport or in rural areas, access to public transit or the cost of filling up a tank of gas can pose hurdles to cancer care.
The same is true for parking, which can add another financial burden to an already expensive course of care. A paper published in July in JAMA Oncology reported parking fees can range between $2 to $5 per hour and $5 to $10 per day at 63 cancer treatment centers in the U.S., amounting to up to $800 for a patient undergoing breast cancer treatment. Parking costs were one of the reasons that Byrd chose public transport over driving herself to oncology appointments.
Mindful of these challenges, some health care providers work on scheduling to pack in appointments within a single day, for instance, rather than spacing them out for patients.
“But our notion of what’s convenient and inconvenient for patients may not really reflect the reality,” Fayanju said. If a patient has to consult with a surgical oncologist, a radiation oncologist, and a medical oncologist on the same day, for example, it could mean three copays, even if these oncologists are affiliated to the same clinic. “[Patients] might actually prefer to spread out the cost of the copays over a few days or few weeks and coordinate it with when they’re getting paid next.”
Transportation can pose an even greater challenge when health care facilities are far away, which can also disproportionately affect Black people in some communities.
“There’s a history of redlining and how neighborhoods were designed in segregated times, and when integration happened, the [health care] facilities were no longer used in African American neighborhoods,” said Christina Yongue, an assistant professor of public health education at the University of North Carolina at Greensboro.
Taken together, those challenges, among others, pose significant hurdles to some Black women as they seek out treatment after a breast cancer diagnosis.
“When you don’t have the proper income, or the proper knowledge, or the proper access, and your tumor biology is a challenge, it all adds up to you not doing well,” said Karen Jackson, founder and CEO of Sisters Network, an African American breast cancer survivorship organization.
Looking forward, Yongue said she would like to see racism, and not just race, analyzed and accounted for in studies that assess disparities in medical care like those documented in the new study.
“You can measure implicit bias among medical providers, microaggression by gatekeepers, review mission statements of hospitals to see if they’re striving to address racial equity,” she said. “I see racism show up when there is an overemphasis on colorblind medical practice. That’s ignoring the totality of identity of the patient,” she said.
Back in 2015, after her diagnosis, Byrd said she was racially stereotyped by a social worker who was tasked with helping her fill out forms and navigate scheduling. The person assumed Byrd might not be able to make it to appointments on time or have the necessary transportation to do so.
“At that moment, you wonder if I was white, would it go down like this,” she said. “You have these flicker flashes that say, if I was a blond, blue-eyed woman here, divorced, breastfeeding my toddler, I would get a little more empathy and more of, ‘What can I do to help you?’”
Researchers like Troester agree that individual patient perspectives will be crucial to better understand the many factors at play in treatment delays and prolonged courses of care among Black women with breast cancer. Going forward, her team hopes to gather data on patient experiences as they navigate the health care system.
“We’ve known about these disparities for three decades and we haven’t been able to close the gap,” she said. “I wish we were further along in addressing them.”