Discrimination, lack of access, mistrust and mistreatment are not unique to Black Americans; Latinos and other minority groups experience it, too. Poor people often wait longer for worse care in underfunded, understaffed — and often de facto racially segregated — public hospitals and clinics than richer, better-insured people. And they know it.
Growing up in Detroit, Michael Winans, now in his early 40s, was “too busy getting by” to pay attention to a syphilis experiment that ended before he was born. But distrust of the medical establishment flowed in his family. His grandmother survived a stroke but died during routine follow-ups; the family suspected sub-par care. Later, his mother hesitated when she needed fibroid surgery. When she finally went in, she ended up with an unexpected hysterectomy. Winans knows that sometimes happens, that the less invasive operation is not always enough. But was it necessary for his mother? He wonders.
“When you grow up in a predominantly Black town like Detroit, you can go much of your life without really interacting with someone of another race,” he says. “If the first time is when you have a health issue… you ask yourself, ‘Does this person care for me? Or see me as a number?’ It’s another level of potential trepidation or concern.”
The Black American experience is getting particular scrutiny right now, along with hopes for change. Some of the people interviewed for this story were more optimistic than others about progress. But none saw the health system as color-blind.
“People see that I’m Black before they notice — if they ever get to the point that they notice — that I have a PhD,” says Cara James, who ran the Office of Minority Health at the Centers for Medicare and Medicaid Services during the Obama administration. James, who also previously led work on racial disparities at the Kaiser Family Foundation, is now the president and CEO of Grantmakers in Health, which works with foundations and philanthropies to improve health care.
Things may have gotten better since the days when James would carefully choose which suit to wear as she accompanied her grandmother, an agricultural worker in the South with little formal education, to medical appointments. But they haven’t improved enough.
“We are human,” she says, “We have perceptions and biases about others.”
Those biases can be subtle — or not.
When Matthew Thompson, a financial officer at a reproductive health organization in Texas, fell ill soon after relocating to Austin a few years back, he didn’t yet have a regular doctor but managed to get an appointment with someone. That doctor, who was white, took one look at Thompson, a 40-something Black male, and on the basis of a brief examination and blood pressure reading, diagnosed him with hypertension and handed him a prescription.
“He was a white doctor … he gave the whole speech about genetics and race,” Thompson recalls.
But most health differences between Black people and white people are not genetic; many are socioeconomic or the result of inequality or the lingering distrust that might deter a Black patient from seeking care earlier.
That doctor was right that hypertension is common in Black men. The problem is that Thompson didn’t have it. The doctor treated a stereotype, not a person.
Ironically, trust — tragically misplaced trust — was part of what allowed the Tuskegee study to go on for 40 long years. That’s according to Lillie Tyson Head, who leads the Voices for Our Fathers Legacy Foundation, an organization created by the descendants of those who suffered. The men, like her father, Freddie Lee Tyson, who was born with syphilis, were told they had “bad blood,” not syphilis. And they trusted those men in white coats who kept studying them, untreated, endangering them, their wives and their children.
“Those men were trusting,” says Tyson Head, 78, a retired schoolteacher. “They went forward thinking they would be treated. And they were still trusting for over 40 years.”