The Forces That Shape Health Care for Black Women

‘What we end up seeing is Black women not accessing health care until things are at crisis levels.’

There is no large-scale, race-based health data in Canada — but what little information we do have paints a bleak picture for Black women.

Dr. Notisha Massaquoi, a health equity expert and former executive director of Women’s Health in Women’s Hands Community Health Centre in Toronto, says Black Canadian women have up to five times the rate of developing chronic illnesses like diabetes and heart disease compared to white women. Black women also stand an increased risk of developing conditions such as pre-eclampsia and eclampsia during pregnancy and delivery. Research from the University of Toronto (U of T) found that Black Canadian women — particularly those from sub-Saharan Africa — are likely being underscreened for cervical and breast cancer despite data from the United States and England showing they are predisposed to worse outcomes from the disease. And most recently, we’ve learned that COVID-19 is disproportionately hitting the Black population in Toronto, with a new study finding that Black people account for 22 percent of reported cases, despite making up only nine percent of the overall city population.

There are countless factors playing into these outcomes, and as the paper published by U of T researchers made clear, we need more data in order to meaningfully parse these findings. But Massaquoi argues that marginalization within the health-care system starts with the myriad ways society fails Black people in general. We spoke to women on both sides of the system to explore some of the often invisible forces that widen the health gap for Black women in Canada.

Diminished pain, dismissive docs

Amoy Jacques’s decades-long journey to an endometriosis diagnosis started when she was a young teen. “I always suffered from very heavy periods, and I thought that was the norm, because growing up in Jamaica, we didn’t talk openly about some of the ailments in our bodies,” she says.

In her final year of university, at the age of 22, she collapsed while out with a friend during a particularly heavy cycle. She was then diagnosed with fibroids, the non-cancerous uterine growths that can often cause prolonged, heavy or painful periods, mild to severe pelvic pain, painful sex, and possible fertility complications. Roughly one in four women will develop fibroids, but incidence rates in Black women are three times higher. The disease also tends to present at a younger age in Black women.

Jacques says even with her diagnosis, she didn’t receive adequate care at first. She says her doctor at the time greatly underestimated her pain level and neglected to provide her with adequate information about fibroids — even the simple fact that they can impact fertility down the road.

“He didn’t ask me about my period, my menstrual health history, nothing,” she says. “He just gave me some pain meds and said, ‘I could put you on birth control,’ which a lot of women get pushed on, but it does not solve the issue. And that was the end of it.”

Jacques, now the founder of WombCare, a health and wellness agency dedicated to improving reproductive health for all, and especially in marginalized communities, says she continued to experience pelvic pain and heavy bleeding over the next several years. It wasn’t until a new physician and new gynecologist took her concerns seriously that she was able to get proper care, as well as a referral to a fibroid specialist. She had minor day surgery to remove one especially problematic fibroid. But they kept growing. Jacques was diagnosed with endometriosis in 2018 and when she finally underwent laparoscopic surgery that same year, doctors removed 38 fibroids from her uterus.

One of the key issues reflected in Jacques’s story is that Black women’s pain is steadily denied, underestimated, undertreated or ignored by medical practitioners. A 2016 study in the U.S. found that half of the medical students and trainees interviewed supported the long-held idea that Black people have a higher pain tolerance than whites — a belief that dates back to slavery-era dehumanization of Black people working on plantations.

Dr. Abo Akintan, a Black woman and family physician with the Albany Medical Clinic in Toronto, sees a need for more culturally competent care on a daily basis. She says many of her patients report that previous doctors were dismissive and that they, the patients, often felt they weren’t heard.

She says her Black patients are often more comfortable dealing with someone who is of their own race and understands their cultural context. “There’s that built-in trust that comes from seeing somebody who looks like you, and somebody who has a cultural understanding when someone says, ‘It just doesn’t feel right.’” A lack of trust in the health-care system, stemming from a history of racialized malpractice, has also long been brewing within many Black communities across North America, Akintan says.

(Related: Why Are There So Few BIPOC Therapists in Canada?)

Not enough support

Eniola Hundeyin, a 33-year-old fashion and textile designer based in Toronto, realized the value of having Black practitioners and personnel around when she had eye surgery earlier this year. After part of the intense procedure, she remembers freezing in the operating room and “shaking like crazy.” A medical assistant, the only Black woman in the room, brought her a blanket. “She held my hand and gripped it tight, and just held me throughout the procedure, which calmed me down,” she says. “I really appreciated her looking out for me.” Later, the same assistant found Hundeyin a pair of protective goggles to take home, even though the other personnel said they had run out.

Hundeyin had also been told that patients who have the shakes would be offered Xanax, a fast-acting drug typically used to treat anxiety and panic disorders. But despite shaking so much that she was warned it could affect the procedure, she wasn’t offered the medication once.

Ann Marie Collymore, a copywriter and editor living in Toronto, also remembers being dismissed and ignored after giving birth to her first child. She recalls waking up in the hospital with her tongue hanging out of her mouth and slurring her words. “They were asking me my name, and I was giving them my phone number,” she says. She had started slipping into postpartum eclampsia. And when her mother, who has experience in the medical field, tried to get the attention of the attending doctor, she had little luck.

“He was very nonchalant. [Meanwhile,] I’m still not making sense, I’m babbling, and he just walked out of the room,” she says. “So [my mother] followed him and said, ‘I need tests done for my daughter right away. This is not my daughter.’”

Thanks to her mother’s advocacy, Collymore underwent a barrage of tests and was eventually diagnosed with HELLP syndrome, a life-threatening condition marked by hemolysis, elevated liver enzyme levels and low platelet levels. “From what my doctor told me, there were times when they thought they were going to lose me completely because my numbers were just going lower and lower.”

Now Collymore wonders what would have happened if her mother hadn’t been there to speak up for her. “With the pandemic, it scares the living daylights out of me, because [patients] can’t have anybody,” she says. “So they’re [largely] by themselves, and that is scary, because anything can happen.”

Early experiences with racism in health care

Research from Women’s Health in Women’s Hands found that about 60 percent of young Black Canadian women experience racism in the health-care system between the ages of 16 and 21. These experiences can have a long-lasting effect, Massaquoi says. “When you have negative racist experiences from health-care providers at a young age, you stop engaging with the health-care system to avoid those types of experiences. What we end up seeing on the other side of that is Black women not accessing health care until things are at crisis levels.”

The result, Massaquoi explains, is that Black women are often late to seek care, particularly when it comes to chronic illnesses. That means late diagnoses and treatment of diabetes, most cancers (such as breast and cervical cancer) and mental health disorders and the lack of tangible, large-scale data only makes this issue worse; having more data might lead to actionable change. “It’s not just [about] research. It’s the consistent collection of race-based data at the point of entry into the health-care system,” she says.

Many of these issues begin well before the point of care, Massaquoi adds. The impact of systematic racism has resulted in poverty rates for Black people that exceed those in the general population, which exposes Black people to chronic illness at a greater rate. And preventive health-care measures like buying a gym membership or having access to a safe public space to do physical exercise can be difficult when a person is living close to the poverty line, Massaquoi explains. “So yes, all these things are a perfect storm that creates a scenario where Black women bear the brunt of racism when it comes to health,” she says.

(Related: My Search for a Therapist Who Gets Me)

The way forward

An important key to breaking this cycle is having more Black representation in the health-care field — and there’s some good news on that front.

“[There’s] definitely an upward trend of more Black students being funnelled into medical programs within the health-care field, so in five to 10 years, when they’re done, we’ll see an increase of Black providers,” says Jacques.

For their part, Jacques and her team at WombCare are developing a research project focused on the experiences Black people have with endometriosis and fibroids. Working toward collaboration with Women’s College Hospital, Mount Sinai Hospital and the McMaster University health sciences program, she says this type of data collection is crucial to figuring out concrete interventions.

Massaquoi says, besides happening through government policies, legislation and dedicated dollars, solutions need to come from the advocacy and non-clinical spaces within health care. Currently, there are only a handful of community health centres dedicated to servicing the needs of Black women in all of North America. Grassroots organizations can focus on developing culturally appropriate solutions and programs that best cater to the health needs of Black Canadian women. “We need to create more health organizations that focus specifically on improving health outcomes for Black communities,” she says.

Next: ‘There’s Growth in Discomfort’: Going Off Script With Marci Ien

Originally Published in Best Health Canada