Fifty Years After the Tuskegee Syphilis Study, Racial Health Disparities Are Getting Worse
On July 25, 1972, the Associated Press published a story equivalent to a five-alarm fire. In a health study, U.S. medical workers had not only denied treatment to poor Black subjects, leading to the death of more than 100 innocent Americans, but had lied about it as well. The exposé helped put an end to the U.S. Public Health Service Syphilis Study in Tuskegee, Alabama. Between 1932 and 1972, scientists with the USPHS recruited 600 Black men—mostly sharecroppers—to participate in a study on the treatment of syphilis. Flyers promoting the study asked, “Colored People, Do You Have Bad Blood?” Some participants had syphilis; those who didn’t made up the control group. The scientists lured their subjects by promising free blood tests, free food, burial insurance, and treatment for syphilis. Even after 1943, when penicillin became available to treat the disease, it was withheld from participants in the Tuskegee Study of Untreated Syphilis in the Negro Male—the better for scientists to amass more data on untreated syphilis in Black people.
In the aftermath of the AP’s report, the men involved in the study filed a class-action lawsuit that resulted in a $10 million settlement. In 1997, President Bill Clinton issued a formal apology to the study’s surviving participants, calling it “wrong—deeply, profoundly, morally wrong.” Yet the legacy of the USPHS Syphilis Study in Tuskegee reverberates today. Given the historical maltreatment of Black people in the U.S., it is perhaps not a surprise that they often avoid going to the doctor, even for routine health checks, or hesitate to participate in scientific studies. Fifty years on, the syphilis study is a sobering reminder that progress in medicine has often been built on the nightmares of those deemed disposable—and that our health care system too often fails Black Americans.
Black Americans receive much less health care than white people. That’s the conclusion of a new study conducted by researchers at Public Citizen, the University of Texas, Harvard University, and the City University of New York that appeared in JAMA Network Open. (Full disclosure: I work for Public Citizen.) Whether measured by doctor visits or per-patient spending, racial inequities in health care have grown in recent years. Researchers collected and analyzed data from 29 federal health surveys of 601,803 people conducted between 1963 and 2019. They found empirical evidence that, while Black-white health care gaps narrowed in the mid-1960s after the passage of Medicare, Medicaid, and civil rights laws, inequality in health care use climbed during the Reagan era, which saw cuts to the social safety net. Disparities have remained infuriatingly high ever since. One serious impediment to closing the gap is mistrust of providers. “Black patients’ beliefs that they may be unwelcome, will face bias, or cannot trust the health care system may reduce their care-seeking and health care use,” the JAMA study reported.
In 1963, Black people averaged 1.2 fewer ambulatory care visits per year than their white counterparts. That gap narrowed to 0.8 fewer visits in the 1970s but has since increased to the current gap of 3.2 visits, the study found. Beginning in 2014, white Americans have been receiving roughly three more doctor visits annually than Black Americans—the largest gap on record. Per-person expenditures for care (by insurers, public agencies, and patients) are also lower for Black people than white people—by about $1,880 each year. (The disparities persisted when the researchers controlled for age, sex, and health status.)
The latest finding echoes a growing body of evidence that racial discrimination in health care remains an enduring problem in American life. According to a study in Health Affairs, Black patients were more than twice as likely as white patients to have negative or stigmatizing descriptors—such as “difficult patient” or “exaggerate”—in their health records. And as reported by Axios, a recent study from the Commonwealth Fund shows that one in four Black and Latino seniors reported experiencing discrimination at the hands of health care professionals. Last summer, the American Medical Association, which comprises this nation’s largest group of physicians, urged its members to “acknowledge the realities of structural racism in medicine” and follow new guidelines to address their effect.
There is no silver bullet to address this issue. The public health researcher Arline Geronimus came up with a useful meteorological analogy for describing the cumulative impact of dealing with racism: “weathering,” in which racism has adverse effects on Black health outcomes. Issues like racially biased referral patterns by doctor’s offices and a shortage of Black physicians won’t be solved overnight.
But there are things we can do. We can invest in more hospitals and clinics that serve Black communities and ensure that those hospitals remain public or are deprivatized to remove cost barriers for people accessing care. Public veterans’ hospitals outperform private ones in quality of care, the average wait time to see a physician, and mental health treatment. Ensuring that hospitals serving predominantly Black populations are public and well funded can safeguard against the excessive costs and poor outcomes that sow mistrust between Black patients and health care providers. Doing so will help us all and honor the victims of the Tuskegee USPHS Syphilis Study.