A new study led by Penn LDI Associate Fellow Kevin Ahmaad Jenkins, PhD, queried patients at a Veterans Administration renal clinic and found them angry, resentful and stressed by their experiences with racism. The findings were published in the May 12 edition of JAMA Network Open.

At a time when most health equity studies are based on data from electronic health records, which often lack personal stories, this project, instead, interviewed the Black patients themselves at Philadelphia’s Corporal Michael Crescenz Veteran Affairs Renal Clinic, asking how they thought racism was impacting their health in general, as well as their treatment for chronic kidney disease in the clinic.

The study tells a story about Black veterans who have endured a lifetime of trauma from structural racism that generates stress that can exacerbate chronic kidney disease (CKD). Then, when they seek treatment for the condition in a VA renal clinic, they regularly encounter additional institutional racism traumas that may make their CKD even worse.

Long-Term Harm

The research was grounded in the well-established fact that traumatic experiences cause stress throughout the human body, and that excessive stress, experienced over a substantial period, can directly cause subsequent long-term physical and mental harm.

Black veterans with CKD are twice as likely to progress to end-stage renal disease than white veterans. Despite the fact that Black veterans make up 12 percent of the overall veteran population, they account for 37% of all VA end-stage renal disease patients.

With an average age of 66 and eight years of military service, the 36 Black clinic patients described how racism:

• Caused emotional and physical stress along with anger and hurt
• Was the root of a strong distrust of the health care system
• Made them behave in hypervigilant ways during their clinical encounters
• Resulted in their “balling up” or suppressing feelings in ways that sometimes drove behaviors like substance use disorder
• Forced them to develop individual and collective strategies for coping with the stress of constant discrimination.

Veterans’ Voices

Here are some sample excerpts of veterans’ quotes from the interviews:

• “I know I’m Black. I know a lot of people don’t like me because I’m Black. But after me serving in Vietnam and in Somalia, I don’t play the race card. I mean, I don’t even pay it no mind until it’s forced on me. [Racism] don’t bother me — it goes in one ear and come out the other.”
• “[Racism] bothers me. It stresses me a little bit. I go smoke a cigarette or drink a beer, or I just sit down to myself. I change my behavior because I can’t react to everything. It’s gonna make you angry… But like I said, I try to keep that down because of my condition. I don’t need to be stressed out and lose this kidney.”
• “[Racism] gives me headaches. It makes me irritable. It just makes me negative. It turns me into a negative person.”
• “I’ve watched certain things — the nurses and their interactions with other patients that are white. They may spend time with them, talking with them, this or that, less time with me or the other African Americans that are in the clinic. But that’s their people. And so I don’t blame them for treating their people good — I blame us for treating our people bad.”

‘A Lot of Nuances’

On this last quote, Jenkins noted: “People often think of racism like it is literally a tool of whites that makes a target of Blacks. But that’s not true. This veteran told us it wasn’t just white staff presenting ‘isms’ and stigma, it was staff that looked just like him as well. There are a lot of nuances at work here and we need to bring them all out.”

Jenkins was principal investigator on the pilot project funded by Center for Health Equity Research and Promotion (CHERP) at the Crescenz VA Medical Center. Both the University of Pennsylvania and the University of Pittsburgh are academic affiliates of CHERP. Jenkins is a Lecturer and Visiting Scholar at Penn, and a Core Investigator at CHERP.

Jenkins emphasized that the study findings are not a surprise to the VA clinic staffers.

“This was not a ‘gotcha project,'” Jenkins said. “The staff — from chief of nephrology to physicians and nurses — worked with us from day one on this and even helped develop some of the questions we used. Then, as it progressed, we had individual physicians asking us how should they be talking to patients? There was a lot of interest in understanding how to address the thing we were studying.”

The Contested Word “Racism”

As a PhD student at the University of Florida in 2012, one of Jenkins’ first published papers was “The Relationship Between Perceived Discrimination and Patient Experiences with Health Care.” His 2015 graduating PhD thesis was “I Think Therefore You Are: Detecting the Social Construction of Race in Medicine.” Ever since, his research has been focused on how stress lethally interacts with vascular-based diseases, including heart disease, chronic kidney disease, and diabetes in high-risk subgroups within the Black community.

But publication in this area of scientific exploration hasn’t always proven easy for him.

“In the past, some of the reviewers of my submitted papers actually told me to ‘stop saying racism’,” Jenkins explained. “I was told to take the word ‘racism’ out or I would never get published. But I kept thinking: ‘How can that possibly work?’ I mean how can you begin to change something you’re not allowed to mention? So, this pilot study at the VA really represents the first salvo of true thought about the word ‘racism.'”

Evidence for Racism as Trauma

“One of the things we’re working through now,” said Jenkins, “is how to provide the evidentiary point that racism is a trauma. We currently talk so much about the existence of racism-driven trauma, but not really about the eradication part. What does it mean if it is trauma? How should clinicians react and respond to that? My argument is metrics. We need to provide the right metrics so we can actually measure that inequity and the trauma it creates.”

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