Racial bias in medicine festered long before virus
Certain illnesses lack research, innovation
Actress Alicia Cole developed a “flesh-eating” disease, sepsis and three life-threatening antibiotic-resistant infections after what was supposed to be a minor surgery in 2006. But for all she went through, Cole recalls details of the racial bias she encountered at the hospital as clearly as the physical ones she suffered.
The experiences of Cole and her family over more than a decade of hospital stays turned her into a vocal patient safety advocate – and one of the very few people of color in the growing movement. Whether it’s unconscious, explicit, institutional or research bias, discrimination in the health care system contributes to the stark disparities seen in how COVID-19 sickens and kills patients of color, health care experts agree.
Insurance coverage and access to care, housing, healthy food and transportation all play a role in how diseases affect races differently. When a bias is built in, Cole said, “People stay away and try to take care of it at home or with a nurse or a doctor at the church.”
“They want to talk to someone who genuinely cares and is not judging them at the same time,” she said. “That’s really important, and not just for Blacks.”
Ask Black doctors or patients if there’s racial bias in the health care system and many laugh at the seeming absurdity of the question. Some of what they point to is anecdotal, but it comes up time and time again. Evidence can be found in the lack of research and innovation in illnesses that mostly affect people of color and in scientific studies that illustrate inequities in health care.
A study that appeared in October in the journal Science claimed an algorithm used by hospitals miscalculated the care needs of sicker Black patients. A 2018 study in Health Affairs found African Americans were more likely to be involved in studies exempted from requiring “informed consent” to fully describe the potential risks of the research to participants.
Margarita Alegria, a psychologist and Harvard Medical School professor, heads the disparities research unit at Massachusetts General. She says the way health care is administered perpetuates bias with its push to maximize profit by seeing more patients. “There’s not enough time not to stereotype patients,” said Alegria.
This leads to “attributional errors” caused when doctors don’t have enough time to get the information they need “to put themselves in the position of the patient,” she said.
“You attribute people’s characteristics and behavior based on their group,” she said.
If these patients then feel dismissed and stereotyped, they are less likely to go back until they are very ill, said Alegria.
Fibroids become focus for change
Treatment of uterine fibroids, a common condition that’s worse for Black women, is an area where racial bias is especially clear.
About 70% of women will have uterine fibroids – benign tissue masses in or around the uterus – in their lifetimes. Most won’t have to do anything and some may not realize they have them.
Dr. Joy Scott, an Oakland, California, obstetrician and gynecologist at Highland Hospital, has many Black patients with fibroids and describes herself as a “fibroid survivor.” Black women, she said, are “notoriously on record as having them the worst, with the most symptoms, in larger numbers and the worst types.”
Bias is part of the reason Black women’s fibroids are often so serious by the time they see a doctor, some physicians say.
By the time women get to the Atlanta-area office of Dr. Soyini Hawkins, their “options aren’t really options anymore.” She asks them when they decided to do something about their fibroids and “that’s when I get the stories.” Their experiences at physicians’ offices are so “disheartening, they don’t do anything and don’t seek a second opinion.”
“Patients tell me they do feel dismissed,” said Hawkins. “It builds a distrust where they won’t go to anyone.”
Her fibroids got so bad, she was warned she might pass out while behind the wheel of her car.
“If it affected white women that way, there would be multiple ways to prevent or cure fibroids,” said Scott. “There’s just not the same interest in doing research.”
Sickle cell treatments ignored
Dr. Ted Love knows all about how diseases get
ignored when Blacks are the principal victims. Sickle cell disease was discovered over 100 years ago and the cause has been understood for about 50 years, but investment and innovation have been far behind other so-called orphan drugs.
Venture capitalists tapped Love to be CEO of Global Blood Therapeutics, which developed one of two new treatments in 20 years for sickle cell disease because he would be so passionate.
“It’s going to be personal for Ted,” Love recalls them saying.
On Thursday, Love spoke at the virtual conference of the pharmaceutical trade group Bio on the importance of diversity in clinical trials and COVID-19’S disproportionate impact on underrepresented populations. He sees parallels in the growing support for changes in policing policies and the growing interest in health care disparities. “The truth is many people who benefit from the current system have really not wanted to give it up,” Love said in an interview.
Hertz Nazaire, 46, was diagnosed with sickle cell disease when he was six months old. Until he started on GBT’S new drug Oxybryta in December, Nazaire and other sickle cell patients’ main options for treatment were medication for the symptoms, transfusions or stem cell transplants. GBT’S Oxbryta is the only Food and Drug Administration-approved treatment that inhibits the sickstudy ling and destruction of red blood cells.
That repeatedly left Nazaire face to face with the health care providers who thought he was exhibiting “drug-seeking behavior” and not in true pain.
“People have a stigma and judge you before they even know you,” said Nazaire, who lives in Bridgeport, Connecticut. “They might take the last person with the same skin color and you are the same person. They don’t treat you like an individual.”
Even conditions that have received significant public attention might have different results based on race. Breast cancer is the most commonly diagnosed cancer in women, but researchers found Black women are much more likely to get a late-stage diagnosis that makes the disease far more difficult to treat. A 2017 of 26,331 women with breast cancer in Missouri found Black women had 30% greater odds of being diagnosed with late-stage breast cancer compared to white women.
Marya Mtshali, a Harvard lecturer in women, gender and sexuality studies, said health disparities for Black Americans begin before they enter a hospital or doctor’s office. Black and Latin people are more likely to be uninsured.
Mtshali said some examples of medical bias can be exacerbated by gender, too. She cited anecdotal reports of Black women with illnesses such as flu or severe stomach pain taking extra time to “dress a certain way” to be treated with respect. The underlying fear is they will not be treated equally when they seek care at a hospital or doctor’s office.