It might start with your symptoms being misdiagnosed. Or dismissed entirely. You need to lose weight; that’s why you’re having back pain. That lump’s nothing to worry about. You’re too young for breast cancer. Maybe the doctor — predominantly white; often male — won’t touch you, even during a physical exam, when touch is standard of care. Maybe he stops listening the moment you mention you’re in pain.
Stephanie Walker was diagnosed with metastatic breast cancer de novo — stage 4 from the start — in 2015. Though she’d worked in healthcare for decades, Walker said she didn’t realize how differently Black patients like her were treated by providers until she moved to a different state, switched oncologists and started having breakthrough pain from her metastatic bone disease.
“I was having a lot of discomfort and nobody could figure out why,” said the 62-year-old patient advocate, who now lives in North Carolina. “And this new oncologist decided I was drug seeking. I shouldn’t be having pain, he told me. My scans were negative; my bloodwork was great. Maybe it was all in my head.”
A former hospice nurse who taught and practiced nursing for 30 years, Walker was floored.
“I felt like if he could say that to me, knowing I’m an educated nurse, what was he saying to other Black women,” she said. “Women who happened to be poor, or illiterate, who didn’t have the things I had — what was he saying to them?”
Cancer can be a completely different experience for people who are Black. And their cancer outcomes clearly show it’s not a good one. Black and African American people in the U.S. have the highest cancer mortality and shortest survival rate of any racial or ethnic group. And it’s not because of genetics. Research shows it’s unequal treatment when it comes to accessing and receiving timely, high-quality cancer care.
Racial bias in cancer care has been with us a long time, as have calls for its demise. But how do you take down centuries of baked-in structural bias against Black patients? Health disparities researchers, providers and educators at Fred Hutchinson Cancer Research Center and its partners within the Fred Hutch/University of Washington Consortium are doing it in a number of ways.
They have to: It’s killing people.
Danté Morehead is one of five community health educators with the Consortium’s Office of Community Outreach and Engagement. His outreach efforts are focused on African American/African-descent communities within the 13 Puget Sound-area counties the Consortium currently serves. But he hears from cancer patients across the U.S., either in response to the OCOE’s monthly podcast Cancer Health Equity NOW which he hosts, their regular email newsletters, or through social channels like Twitter.
“Poor bedside manner, not getting access to clinical trials, not getting questions answered about medications or better options, not getting access to testing. Those are the stories that I hear from Black patients,” he said. “A lot of stories are about the way we are treated in the clinical setting. It can be subtle or blatant or hyperbolic, but in some way, shape or form, it’s different. The quality of care is just different. And it shouldn’t be different, it should be fair.”
Morehead, who has an extremely rare type of kidney disease and is a frequent patient himself, said one of the most essential things OCOE has done is name and claim the issue.
“We have to force ourselves to bring the issues to light, to acknowledge the trauma, admit there’s a problem,” he said. “People may try to steer the conversation away and say ‘not everything is about racism,’ but structural racism creates terribly negative cancer outcomes for Black and African American patients. We’re not making it up.”
The COVID-19 pandemic, which hit Black, Indigenous, Hispanic/Latino and other communities of color with a “horrifyingly disproportionate” number of cases and deaths, brought the country’s health inequities into stark focus. But cancer researchers like Fred Hutch’s Dr. Christopher Li have been sounding the alarm about unequal care for years.
“Health disparities date to the very founding of our nation and persist to this day,” said the epidemiologist and co-author of a recent progress report issued by the American Association of Cancer Research. “And they’re present along the full cancer continuum. Structural and institutional racism are a primary overarching driver of cancer disparities.”
Fred Hutch epidemiologist Dr. Christopher Li
Read about the Hutch’s Educational Outreach programs, a pipeline to careers in medicine and science for all.
Having trouble eating healthy on a budget? Here are some quick, easy and inexpensive one-dish meals from Cook for Your Life, Fred Hutch’s healthy eating website.
Much of Morehead’s community engagement work is centered on cancer prevention or risk reduction, sidelining disease before it can get started. He and his health education partners go out and give talks, hold health fairs with screenings, conduct community-based research and share culturally appropriate resources (they went virtual during the pandemic).
Although certain hereditary cancers are unpreventable no matter how much you exercise or how little you smoke, it is possible to substantially reduce the risk of many cancers, diabetes, heart disease and other chronic illnesses by consistently eating healthy meals (and not too many of them), moving your body, and avoiding all the usual suspects like cigarettes, sugary soda, processed foods, and too much booze.
But delivering that message is not always easy.
“We did an education event before the pandemic on colorectal cancer prevention and reducing the amount of bacon you eat, and that conversation did not go well,” Morehead said. “Everybody was trying to find a loophole. They wanted their bacon. But we’re not saying give up bacon. Just don’t eat it every day.”
Advice on healthy eating can also butt heads with socioeconomic realities in Morehead’s world. It’s tone deaf to tell people to “just eat healthy” when they live in a food desert — an area without stores that stock disease-busting fresh fruits and vegetables — and have to stretch a tiny budget to feed a large family. Fresh produce can get pricey.
“Nobody wants to drive out of their way and spend $20 on pita crackers and oranges,” he said. “It would be nice if they put [more stores] in the hood. Cancer prevention is too difficult in many peoples’ eyes.”
What would help? Meeting the African American community halfway, he said. And not just when it comes to prevention, but policy.
“Everything feels like pushing a boulder up a hill,” Morehead explained. “We don’t get the same access, information or opportunities. There’s a lack of representation of people of color in clinical trials. Look at how many states have chosen not to expand Medicaid and that would help a lot of underserved populations. You have to ask, do Black lives matter? Well, do they?”
Morehead’s counterpart in clinical navigation is John Masembe, who works with Black and African American cancer patients at Seattle Cancer Care Alliance, the Hutch’s clinical-care partner within the Consortium.
Masembe understands well that healthy practices and products are only available to those who can afford them. He also knows that can mean making hard choices.
"Life responsibilities dominate," he said. "It takes priority over health. I can take a day off for my physical, but not a lot of [Black, Indigenous and People of Color] have that."
Masembe said a busy single mom scrambling to make ends meet might opt for $20 worth of fast food for her family’s dinner because it can feed everyone and doesn’t require any prep. It saves her time and money at the moment. The problem, he said, is these often-unavoidable choices can create a bad health cycle that will continue to roll on, generation after generation.
“It’s a pattern,” the patient navigator said. “When you eat that food at a young age, it has a long-term health effect. And when you’re super stressed, that weakens your immune system, making you more susceptible to disease.”
Born with sickle cell anemia, Masembe knows only too well that being a chronically ill patient can be stressful, as can bumping up against the bias associated with a genetic disease that occurs more frequently, but not exclusively, in African Americans. In 2012, Masembe went through a bone marrow transplant which cured him. But he lost his little sister — also born with sickle cell —that same year.
At age 29, he is a young man who has suffered a lifetime’s worth of loss, grief, pain and bias. It’s what informs his work with patients now.
“With sickle cell, you’re dealing with a lot of pain on a daily basis,” he said. “My tolerance is different to what nurses usually see so when I’d tell them I was at a 10 on the pain scale, they would say, ‘You look like a seven or a five.’ And I experienced other things when I was young and didn’t know what they meant. My sister did, too. She got admitted to the hospital a lot and I still remember a provider telling her, ‘This is a hospital, not a hotel.’”
As he grew up in Seattle, Masembe, who was born in Uganda, saw a connection with how race impacted health and quality of life.
“I realized how race, socioeconomic status, location and education — the social determinants of health — play a huge role in everything,” he said. “My passion to work with Black and African American patients is directly attributed to my own experiences. I really wish I had someone to navigate the complexities of our healthcare system when I was sick.”
One of Masembe’s jobs is to offer individualized assistance to patients, families and caregivers. He helps them navigate system barriers, identifies their tangible needs and connects them with resources during treatment. That could include medical transportation, housing, lodging, financial assistance and insurance coverage. Multilingual and compassionate, Masembe acts as a cultural broker to improve communication and strengthen the patient-provider relationship.
“We see a lot of patients from low-income households who need treatment, but also patients who can’t afford to take time off work,” he said. “They’re faced with choosing between the cost of care and meeting their family’s needs. There’s a big need for policy improvement regarding who qualifies for resources like housing and financial assistance. There’s also a need for a diverse staff that can advocate for patients who feel unheard or misunderstood as Black folks.”
Considering medicine’s crawl towards diversity, especially within cancer care, this is not news. ASCO reported last year that out of 12,100 practicing oncologists in the U.S., only 2.3% identified as Black or African American. The last census data put the U.S. Black population at around 13%.
At age 40, Morehead has an extensive medical history, but he said of the dozens of providers he’s had over the years, he can still “count the number of Black doctors on one hand.”
“People want doctors who look like them,” he said. One big reason? Black doctors listen to Black patients.
Morehead recently heard from a 65-year-old Black man from Iowa who’d gone to multiple doctors seeking help for his symptoms. Not one of them mentioned prostate cancer screening.
“By the time somebody recommended a PSA test, he had stage 4 prostate cancer,” Morehead said. “Black patients’ symptoms are constantly dismissed. We call it medical gaslighting and it can go on for months. By the time you figure out the problem, it’s too late.”
Increasing the number of Black/African American health care providers would go a long way to reducing this, he said. It would also help eradicate the harmful myths about the “Black body” that still persist today — even in medical schools — like “Black skin is thicker” or “Black patients don’t feel pain the same,” false beliefs that have led to Black patients consistently being undertreated for pain.
“We should be encouraging more diversity in this field,” Morehead said in a recent podcast. “Encouraging more students to be nurses, scientists, reseachers, doctors and health educators and add to the pool of talent. That’s how you really address health equity. These are the people affected most by it. If they’re working in that field, it would help tremendously.”
Fred Hutch biostatistician and clinical trials researcher Dr. Joe Unger
Bias-busting tips from the
Office of Community Outreach and Engagement
Are there things patients can do to ensure better care? Community health educator Dante Morehead suggests the following.
Establishing trust against a backdrop of bias and neglect is a tall order, but Masembe is up for it.
“I can bridge that gap in communication between the patient and the providers,” he said. “Sometimes, the doctors tend to look at the numbers, the labs, the protocols and forget there are other contributing factors stressing out our patients like loneliness, dealing with the stress of the disease, fear of death. I’m not a psychologist, but the patient is able to find comfort.”
One recent patient, who Masembe was told had anger issues, kept missing his daily treatments.
“But he wasn’t angry, he just had a loud voice,” Masembe said. “And he was lonely. He wanted to engage, to have a conversation. I set him up with Hope Link, to help with his transportation issues, and I talk with him now. We joke around and I’ve started to see a shift. He’s coming in five days a week now. He’s slowly starting to trust.”
Lack of trust in a predominantly white medical community was long thought to be the reason Black patients weren’t participating in clinical trials; lack of trust was also cited with regard to COVID-19 vaccine hesitancy in the Black community.
But in both cases, researchers say it’s more about access and structural barriers.
“It’s not the patients who are the issue,” said Hutch researcher Dr. Joe Unger who’s spent the last several years identifying what keeps people from enrolling in trials. “It’s the system itself.”
Unger recently published a meta-analysis of 35 cancer studies, calculating the number of patients who were asked to participate and the number who enrolled.
“The answer was remarkable,” he said. “More than 50% of the time, if they were offered a trial, they would participate. And it did not differ by race or ethnicity — Blacks and Asians and Hispanics were all as likely to agree as white patients, perhaps even moreso.”
Still, overall trial participation is commonly pegged at a rate of around 5%, with even lower rates for Black patients, he said.
“The analysis just turns that on its head and reveals it’s the system that keeps patients from participating in larger numbers, not their willingness,” he said. “The best way to better ensure a diverse enrollment is to make certain all patients are offered a trial when it’s available, irrespective of race or ethnicity.”
Walker, the patient advocate, also believes Black cancer patients want to be in cancer clinical trials and is currently collaborating with two advocacy organizations on a national survey of Black cancer survivors, trying to determine why they would or wouldn’t enroll. She’s also started mentoring patients at the request of her new oncologist. (She has a new palliative care doctor, as well, who easily got her pain under control.)
Like Masembe, she’s trying to advocate for those who have trouble advocating for themselves.
“Some of the people in my community don’t have internet, they don’t know how to do telehealth or they can’t read,” she said. “I’m advocating for them.”
Morehead said lifting up the voices of the people in need is how you bring about real change.
“To really address systemic issues and equity, it’s important to have the voices of those most affected in the room or at the table,” he said. “The first thing we do is find those voices, give them a platform. When I’m out there talking to people, I listen as much as I speak. You can’t achieve equity without going to the community and engaging them in dialogue, getting their perspective and including them in future solutions and ideas.”
Will these efforts make a difference in cancer outcomes for patients? These two health equity heroes think so.
“This program is going to change lives,” Masembe said. “I feel proud to work in an organization that’s open to change and being more inclusive. It’s going to take time, but I feel like it’s going to set a foundation for how we can rebuild the broken trust between patients and caregivers. And also put a spotlight on systemic biases not just in cancer, but the delivery of all health care.”
Diane Mapes is a staff writer at Fred Hutchinson Cancer Research Center. She has written extensively about health issues for NBC News, TODAY, CNN, MSN, Seattle Magazine and other publications. A breast cancer survivor, she blogs at doublewhammied.com and tweets @double_whammied. Email her at firstname.lastname@example.org. Just diagnosed and need information and resources? Check out our patient treatment and support page.
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