50 Years After Tuskegee: Patrice Harris, MD, on the Lasting Impact of the Syphilis Study
In 1972, a social worker exposed the 40-year-long U.S. Public Health Service study on Black men who had syphilis and were being denied treatment. Dr. Harris looks at changes in healthcare since, and what still needs to be done.
This July marks the 50th?anniversary of the exposure by a social worker of the U.S. Public Health Service (USPHS) Syphilis Study at Tuskegee. For 40 years, from 1932 to 1972, the USPHS and the Centers for Disease Control and Prevention (CDC), which was established by the USPHS and took over the study in 1957, intentionally withheld treatment for the life-threatening illness in 399 African American men, among the 600 involved in a study that set out to analyze the natural history of untreated syphilis.
That purpose was not shared with participants, and those diagnosed with syphilis were not told they had the disease. Researchers told them they were receiving treatment for “bad blood,” which people in the local community thought was caused by several ailments, including syphilis, anemia, and fatigue. Participants were treated only with iron tonic and aspirin, even though penicillin was a proven cure for syphilis by the mid-1940s. The men were lured into treatment with promised perks like meals, free medical exams, and burial insurance. The experiment took place at the Andrew Memorial Hospital on the campus of the Tuskegee Institute in Alabama.
After the study was revealed, a class-action lawsuit was filed in 1973 on behalf of the study participants and their families. They received a $10 million out-of-court settlement in 1974. According to the Equal Justice Initiative, the money was used to fund medical care for survivors and their families, but it couldn't undo the damage: 128 participants died of syphilis or related complications, 40 wives were infected, and 19 children were born with congenital syphilis. The Tuskegee experiment helped fuel the focus on bioethics in the ’70s, which continues today.
The impact of the Tuskegee experiment lingers. The sins of the past have not been forgotten by Black Americans, who point to this history as just one of the reasons for their mistrust of the medical community. It’s top of mind elsewhere, too. Martin Tobin, MD,?a professor of pulmonology at Loyola Medicine in Maywood, Illinois, and a former editor of the American Journal of Respiratory and Critical Care Medicine, wrote the article “Fiftieth Anniversary of Uncovering the Tuskegee Syphilis Study: The Story and Timeless Lessons” for the current issue of the journal. In it, he examines how present-day health disparities have roots in the same racism that made the USPHS study possible.
Patrice Harris, MD, MA, FAPA, a psychiatrist and Everyday Health’s chief health and medical editor, who was the first Black woman to be elected president of the American Medical Association, shares her thoughts on what has and hasn’t changed in healthcare since the Tuskegee exposure 50 years ago. A featured expert in Oprah Winfrey’s newly released documentary The Color of Care on the Smithsonian Channel, which examines how racism permeates healthcare in America — and how the COVID-19 pandemic made things worse?— Dr. Harris regularly speaks out about racial inequities in the healthcare system. Here, she discusses what needs to be done to make healthcare more equitable for all.
Everyday Health: The fallout from Tuskegee resulted in decades of mistrust of the medical community by Black Americans. How has that impacted their health in the years since?
Patrice Harris: The 50th?anniversary of the uncovering of the study is a time to reflect. The impact has never been more obvious. With COVID-19, you see the direct connection. Black Americans had questions — and appropriate questions — regarding the vaccine. With what happened at Tuskegee, and many other incidents involving communities of color, that mistrust was earned. And that mistrust of the vaccine was heightened by the politicization, speed, and sheer magnitude of misinformation via social media about the [vaccines]. It wasn’t always the case that we were so skeptical about vaccines.
EH: How would you say the medical community has responded in the 50 years since?
PH: The medical community is still on this journey. There has been some progress, but far from enough. You do see some steps forward; for example, the American Medical Association hired its first chief health equity officer in 2019. What is hopeful is that there is a recognition of the problem and more education around the topic. People in the medical and public health communities are talking about it. That talk has led to an increased commitment to collect data around race, gender, zip codes, and other factors. We are early in this commitment, but we saw the importance of data with COVID-19: The data collected revealed the story of the inequities that were indisputable. However, it’s not just the medical community’s responsibility, but the whole of society’s responsibility to address health inequities.
EH: Where are there still problems in the healthcare system, and how does that continue to affect the health of Black Americans?
PH:?There continue to be problems regarding access, affordability, and quality of care. In some regions of the country, Black people make up a significant number of those without health insurance, and we know those without health insurance live sicker and die younger. Your zip code is crucial in determining your life expectancy. Living in an area with underfunded educational systems, poor air and water quality, and food deserts negatively impacts health. There still exists interpersonal, systemic, and institutional bias and discrimination. And we must confront the issue of racism. All of these and other social determinants of health are interconnected and lead to poorer health outcomes.
EH: What strides have public health and healthcare professionals made in earning the trust of Black Americans, and what do they need to do more of to keep earning that trust?
PH: There was some progress in this area during the pandemic. Healthcare professionals reached out to faith and community leaders and to local organizations to encourage them to get accurate information about COVID-19 and the vaccines, and to provide accurate information. There was an effort to reach deep into the Black community. More of this can help the mistrust, as will addressing systemic racism.
The medical profession still has a long way to go to build trust. We as a profession must examine our own biases, commit to training and education, and commit to amplifying solutions within our larger institutions. While medical professionals have a front row seat to the impact of racism, bias, and discrimination, it’s not only the medical profession that has work to do, but all of society. The media can do its part to make sure the information that is out there is correct; public-private partnerships regarding community health initiatives can play a significant role; and finally, C-suite leaders (executive-level managers) and corporations can create initiatives to address health inequities.
EH: The messenger matters. Having a doctor you?can relate to, who is culturally competent, breeds trust. What do you think can be done to bring more Black people into healthcare?
PH: The statistics are abysmal. There were more Black men in medical school in the ’70s than there are today. We haven’t made great strides. We have to review the entire journey to medical school and support early pipeline programs as well as revisions to the medical school admissions process.
Traditionally, applicants have to fly across the country to medical schools during the application process. One upside during the COVID-19 pandemic: medical school interviews were done virtually, which allowed participation in more interviews. That should be a consideration moving forward.
Some medical schools are blinding the initial applications, therefore admissions review committees don't know some identifying characteristics of applicants at the initial review, so there’s potentially less bias. And, of much importance, admission committees need to be diverse. Who’s sitting around those tables makes a difference. The commitment for diversity has to come from the committed leader at the top.
EH: Is there anything else you want to add about what can be done to make healthcare equitable for all?
PH: The key is giving people the opportunity they need to achieve optimal health. The medical profession must lead on this issue. There is not a one-size-fits-all approach. We must meet people where they are, and we, and all of society, have to be intentional about having conversations around discrimination and racism. The 50th?anniversary is an opportunity for us all to look at the past, learn the lessons, and take actions based on those learnings to move forward toward greater equality in healthcare.