One thing is clear about the serious problem of diabetes among Black people in the United States: It’s not just one thing causing the problem.

“It’s really at all levels,” said Dr. Joshua J. Joseph, assistant professor of medicine in the Division of Endocrinology, Diabetes and Metabolism at The Ohio State University Wexner Medical Center in Columbus. It’s not just the choices people make—it’s the entrenched issues that lead them to make those choices.

The statistics are stark. According to the Department of Health and Human Services’ Office of Minority Health, 13.4% of Black men and 12.7% of Black women have been diagnosed with diabetes. Combined, their rate is 60% higher than that of white people.

In the U.S., Black people are twice as likely as their white counterparts to die of diabetes. They are three times as likely to end up hospitalized for diabetes-related complications. They are more than twice as likely to undergo diabetes-related leg or foot amputation. And they are more than three times as likely to have end-stage kidney disease.

Researchers have hunted for genetic causes, said Joseph, who leads a research group dedicated to improving diabetes prevention and treatment. But “genetics just does not explain a lot of Type 2 diabetes that we see in the United States.”

The central issue, he said, is lifestyle factors that drive obesity, which a recent study in the Journal of the American Heart Association found may account for up to half of all Type 2 diabetes cases in the United States. And about 55% of Black women and 38% of Black men have obesity, according to American Heart Association statistics.

“But those lifestyle factors, they don’t come out of thin air,” Joseph said. Which is why he emphasizes the need to look at “upstream,” communitywide issues.

As a doctor, he can tell a patient to eat fruits and vegetables and cut back on sugar-sweetened beverages. But “if the environment that they live in does not have healthy food options, then that’s going to be very difficult for them.”

Neighborhoods with a predominantly Black population, research has shown, are less likely to offer such options. And Black Americans are broadly affected by other problems rooted in systemic racism that can affect health.

“This is not a minute thing,” Joseph said. “This is a big challenge that we are facing. And that’s why in some ways, the disparities that we see in diabetes haven’t been changing, because we’ve tried to address them in small bites. But we really need broad, overarching solutions that are based in policies that address the inequities that we see in communities of color.”

The beginnings of a solution, he said, might be education. It needs to be culturally relevant and “delivered by individuals that have relatable backgrounds and experiences.”

Annette Lartigue of Trenton, New Jersey, has dealt with diabetes for decades. Her mother was what she called “a diabetic in denial,” and Lartigue was hospitalized with gestational diabetes after a car crash when she was pregnant with her daughter 33 years ago. Gestational diabetes resolves after giving birth, but nearly 1 in 5 women like Lartigue go on to develop diabetes.

Despite that, she said, “I did not, for a very long time really, get my life together” to address her diabetes. “And there’s no excuse for it, except that I thought I could do it on my own.”

Although access to healthy food was never an issue, Lartigue said, “there weren’t many doctors who looked like me, understood my history—or my mother’s for that matter.”

She had similar trouble connecting with nutrition professionals, a field that is mostly white. She half-jokingly said they were “typically someone who weighs 98 pounds and wants you to eat two pieces of celery and a teaspoon of cottage cheese” and say that’s going to make you feel better. “Every time I walked into a nutritionist’s office, I was like, ‘I’m not dealing with you. You don’t understand me.'”

Her turnaround began when she met a Black doctor who told her, “‘You know, we can do this.” He promised that if she would work with him, he would work with her.

“And I cried,” she said. “I was so happy because nobody ever said ‘we.’ It was always ‘you.'”

He understood her as a Black woman, she said—from her need to be treated respectfully to “the real understanding about how I as an African American woman eat. I’m not eating a salad every day, all day. That’s not going to happen. So how do I deal with the food I do eat?”

Lartigue retired this year as executive chief of administrative services for the Mercer County Board of Social Services and is a Know Diabetes by Heart ambassador for the AHA and American Diabetes Association. She gets support from a nutritionist, who is Black, and a nurse, who is white.

“It doesn’t matter what color they are,” she said, as long as they understand you with more than just textbook knowledge of your problem.

Joseph agreed that trust is a critical part of diabetes care, because patients have to manage so much on their own. He makes a point of being encouraging and talking about family issues “to drive that collaborative, trusting relationship, which I feel is the key to diabetes management.”

That concept works on a broad level too, he said. Academia, industry and others need to start by listening to and connecting with communities before trying to fix things.

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