A majority of African Americans have low levels of trust in the health care system, expressing much less confidence in doctors and hospitals than white people, according to a new poll by the Kaiser Family Foundation (KFF) and The Undefeated.
Across the country, only 6 of 10 Black adults said they trust doctors to do what is right most of the time, compared with 8 of 10 white people. Slightly more than half (56%) of Black people said they mostly trust their local hospitals, compared with 7 in 10 white people.
The numbers appear to be getting worse amid the coronavirus pandemic that is disproportionately sickening and killing Black people. Seven of 10 of African Americans say the health care system treats people unfairly based on race “very often” or “somewhat often,” a notable increase from 56%, when a similar question was asked in a 1999 poll.
The distrust could worsen an already catastrophic Black health crisis if African Americans are reluctant to participate in testing, vaccination or treatment.
One in 5 Black adults say they were treated unfairly because of their race in the past year when getting health care for themselves or a family member. A startling 37% of Black women with children report this type of discrimination, compared with 25% of Black women overall, 15% of Black men, 7% of white women and 4% of white men.
Overall, the poll reveals a set of Black experiences and beliefs that are crippling symptoms of what numerous studies (PDF) document as the long history of racism in medicine. Black people in the poll reported higher rates of being disbelieved, and of being denied tests, treatments or pain medication they thought they needed. Their responses reflected a timeworn piece of Black wisdom: if white America catches a cold, Black America gets pneumonia.
“It just shows how deeply rooted or entrenched some of these attitudes are,” said Faith Mitchell, a health researcher at the Urban Institute, a nonprofit think tank that studies health, economic and social policy issues.
Why do these problems persist even after decades of research into medical racism? “That’s the existential question of our lives,” Mitchell said. “We know it’s happening, it’s being documented, and it continues to happen.”
“I don’t think the health care system is ready to confront these issues head-on,” said Cara James, the CEO of Grantmakers In Health, which connects health foundations with philanthropic organizations, and the previous director of minority health at the Centers for Medicare & Medicaid Services. “Pockets of it are, but overall we’re not there yet.”
James said the poll results “show the need to really, truly be brutally honest about what’s going on and to confront that. That’s hard because no health care provider, no institution wants to think that they are treating people differently. But it’s also hard, when you look at these numbers, to say that it’s not happening.”
In the most in-depth survey in years about Black attitudes and experiences with health care, KFF and The Undefeated polled 1,769 adults, including 777 African Americans, from Aug. 20 through Sept. 14. The results have a margin of error of 5 percentage points for Black Americans.
The poll showed that African Americans are more likely than white people to report that they were refused a test or treatment they thought they needed (19% vs. 12%) or that a health care provider didn’t believe they were telling the truth (22% vs. 17%).
Diana Verner, a retired phone company account executive who lives in Chicago, recalled one of these maddening experiences. Verner’s granddaughter, a second-year law student at DePaul University, had heart palpitations. When Verner took her to the emergency room at Rush University Medical Center, the doctor, a white man about 40 years old, accused her granddaughter of using cocaine.
“My granddaughter has never drank or smoked,” said Verner. “This doctor made an assumption about a Black girl. Every time I told him he was mistaken, he had some type of comeback that it must be drugs, like, ‘The parents are usually the last to know.’”
A blood test proved the doctor wrong. “I told him, ‘You think you know what all Black people are. I’m afraid somebody will lose their life as a result,’” Verner said.
Adrian Hopson, a mother of five who works as a clerk in an Alabama law firm, said she sought treatment from a white male doctor for painful menstrual cycles that lasted more than a month. Hopson said he refused her request for a hysterectomy because she was “at risk,” but would not describe what those risks were. She consented to a different outpatient procedure that did not solve the problem. When she returned to his office a few days later and asked for treatment for her pain, the nurse told her, “You’re going to be in pain.”
“What type of crap is that to say?” Hopson said. “I thought the procedure would stop the pain and the bleeding.” She sought a second opinion from a Black doctor, who performed a hysterectomy that solved the problem.
With some doctors, Hopson said, “It seems like their first response is that nothing you’re saying is actually going on. I don’t know if they think I don’t know what’s going on with my body, or if they think I’m lying.”
The poll also showed that Black people say they were refused pain medication at higher rates than white patients (18% vs. 13%). That is consistent with much previous research, as well as the experience of Lynette Butler, a 40-year-old Black woman from Arkansas. “I had an aneurysm and went to see my brain doctor after the surgery. He told me to go buy some ibuprofen from Walmart. C’mon, man, I just had brain surgery!
“He made me feel like, you’re Black, so you don’t matter,” Butler said.
Kim Glasker, a 63-year-old Black woman from Salt Lake City, said that when she went to the emergency room complaining of persistent headaches, a white doctor thought she was a drug addict trying to obtain narcotics. Glasker said the doctor tried to send her home, but her boyfriend insisted that she remain hospitalized – and then she had a stroke.
“Somebody should have listened to me,” Glasker said.
Glasker has a high school education and worked an hourly-wage airport job before she retired. Nineteen percent of Black people with income of less than $40,000 per year and 22% of Black people making between $40,000 and $90,000 say they were denied pain medication, compared with 9% of Black people making $90,000 or more. But in other areas of mistrust and mistreatment, higher incomes did not shield Black people from feeling abused.
To be sure, some negative experiences are reported at roughly similar rates by Black and white people, such as health care providers suggesting they were personally to blame for a problem (20% vs. 17%); providers assuming things without asking (27% vs. 25%); and being talked down to or treated with a lack of respect (22% vs. 23 %). About half of all adults said they had at least one type of bad experience in the past three years, which indicates that the nation’s health care system has problems beyond racism – including gender bias, with women reporting mistreatment more than men.
But the poll showed that the problems of too few Black doctors, financial barriers to getting treatment and less accessible care contribute to the significant distrust Black Americans have:
Some studies have shown that Black patients have better outcomes when they are treated by a Black doctor. But Black people are more likely than white people to say it’s difficult for them to find a doctor who shares their background and experiences (65% vs. 40%). The percentage was about the same for Black people regardless of education level or income.
About a quarter of Black adults would prefer to receive care from a Black doctor. And 28% of those who would prefer to see a Black doctor have never been treated by one. Only 5% of doctors in America are Black.
Twenty-one percent of Black people say it’s hard for them to find a doctor who treats them with dignity and respect, compared with 14% of white people.
About 1 in 4 Black people say it’s difficult for them to find health care at a convenient location, compared with about 1 in 5 white people. Black people also were more likely to say it’s difficult to find health care they can afford (48% vs. 39%).
When looking at explanations for why Black people as a group experience worse health outcomes, Black people were far more likely than white people to mention disparities in access to health care and insurance (72% vs. 49%), environmental exposures (70% vs. 40%) and substandard levels of care provided to Black patients (54% vs. 26%). Curiously, Black adults are also more likely than white people to blame a lack of healthy behaviors (38% vs. 24%) and genetic differences (26% vs. 14%).
The poll showed high percentages of Black people distrust the health care system even if they have not personally had negative experiences. James said this partly comes from knowledge of the history of discrimination in health care.
“Many people still remember the Tuskegee experiment,” she said, referring to white doctors who withheld syphilis treatment from hundreds of impoverished Black men in a study that ran from the 1930s to the 1970s. “Everyone has heard the story about Serena Williams and her experience of being discounted with her symptoms when she almost died after delivering her daughter. Unfortunately, that is something that is shared by far too many people of color, especially Black women.”
Jeremy Johnson, a 39-year-old entrepreneur in Los Angeles, said he does not trust the health care system, even though a white doctor saved his life – and his shattered leg – after he was hit by a car while riding his motorcycle six years ago. He separates his own experience from his observations about how poor people suffer with limited or no health insurance, and how their lack of insurance connects to the systemic racism that has denied many Black people equal economic opportunity.
“I think there are some undercover racists betraying their Hippocratic oath,” Johnson said, “but a majority of doctors? No, I don’t believe that. I’ve had too many positive experiences that showed me otherwise. But I’m blessed to have insurance. I’m in a privileged situation.
“Ultimately, it boils down to the systematic racism and oppression that has set us up for failure. … Add in the facts of the disparity in actual and generational wealth, we have no insurance or the bare minimum of insurance, even if you do have insurance, you have to pay thousands in deductibles and copays before they start covering you. … It all trickles down.”
As the pandemic grinds on the friction points hindering African Americans from equal benefits of the health care system, “doctors have to take the message to the people,” said Mitchell. She recommended that health care systems seeking to overcome distrust could engage local Black communities through informational forums at churches and schools, writing explanatory articles on social media or in local newspapers, meeting with elected officials to learn more about the needs of their constituents, or providing phone numbers that prospective patients can text. “Be present,” she said. “Be personal, so people feel a connection, because they are more likely to trust you if they feel a personal connection.”
Mitchell is affiliated with several organizations working to eliminate health disparities, such as the Collaboratives for Health Equity and the Institute for Healthcare Improvement (IHI). She said progress is being made at some places, including eight health care organizations that participated in the IHI’s Pursuing Equity Initiative. But there remains a huge amount of work to be done, she said, “because it’s not going to just happen on its own.”
James said eliminating systemic bias in health care “is going to require sustained actions, resources, leadership and commitment. But if we don’t get serious about addressing these issues and provide the necessary resources, we will be having the same conversation decades from now.”
“People have to hold up a mirror and realize that they may be contributing to the problem. And that’s hard for any of us to admit.”