Diabetes care has been clouded by an undercurrent of prejudice and racism since the early days, and that legacy of error must be acknowledged to move forward, according to medical historian Arleen Marcia Tuchman, PhD, professor of history at Vanderbilt University in Nashville, Tennessee.
Tuchman recently published “Diabetes: A History of Race & Disease,” a thoroughly researched book showing evidence that prejudiced researchers reinforced stereotypes about the genetics of various racial groups, sabotaging their care over the decades.
She cautions that we should not overlook the race-based barriers to medical care that so many Black Americans faced, nor the deeply rooted racial and ethnic prejudices of generations of leading diabetes researchers and physicians.
Tuchman reports that in 1897, Dr. Thomas B. Futcher of Johns Hopkins Hospital declared that diabetes was rare among Black people in the United States. In 1931, however, Dr. Eugene Leopold, also of Johns Hopkins, declared the rate of diabetes to be the same among those patients identified as Black as among those identified as white. And in 1951, Dr. Christopher McLoughlin, a noted Atlanta physician and researcher, declared diabetes among Black women in Georgia to be surprisingly high compared to all other groups.
What could have happened for these three researchers to come to such contradictory conclusions in the span of roughly half a century?
Certainly, there were societal changes that could have influenced rates of diabetes diagnosis, including increased urbanization as a result of the Great Migration, a name given to the mass relocation of more than 6 million Black Americans to cities in the Northern and Western United States.
In fact, Tuchman lays out evidence that prejudiced researchers, armed with insufficient medical data on communities of color, first concluded incorrectly that Black Americans had some genetic protection against diabetes throughout the first half of the 20th century.
Using arguments based in racism, these researchers argued this supposed protection came from an equally imaginary genetic primitiveness of the Black race, and that diabetes was more often a disease for higher-income and more “civilized” groups. And yet, by mid-century, as rates of diabetes diagnoses began to climb among Black people, and as diabetes began to be seen as more associated with poverty, the argument seemed to flip and some researchers began to lament the “orneriness” and “lower intelligence” of their patients of color.
These patterns of erroneous thought were not confined to researchers treating Black communities. Throughout her book, Tuchman documents how U.S. researchers employed the same cycle of prejudices and misunderstandings to explain diabetes rates among several other groups of ethnic and cultural minorities, including Jews and Native Americans.
For these two groups, researchers first declared each group to be somehow genetically protected from diabetes, and then to be more susceptible to the autoimmune condition, or more at fault for high diabetes rates and poor outcomes.
Tuchman provides extensive historical evidence that most researchers too often relied on inadequate public health information and incorrect understanding of the genetics of racial groups to reinforce existing stereotypes about these groups and their health.
For example, the researchers didn’t fully take into account that there was little in the way of public health infrastructure for most Black people in the South, and that this may have kept down the rate of formal diagnoses of diabetes in the early 20th century. Also, researchers routinely lumped together genetically and culturally different groups of Native Americans, while incongruously assuming those studied to be of a pure, genetically isolated group.
These erroneous presumptions gave rise to attitudes that led to or reinforced institutional barriers to adequate medical care for so many with diabetes.
It also likely helped lead to a deep gulf between people with diabetes depending on whether they had type 1 diabetes or type 2 diabetes, Tuchman argues.
Since the beginning of insulin therapy a century ago, type 1 diabetes too often had been seen as an upper middle class, white affliction. Lack of medical care historically prevented many without means from receiving a correct type 1 diagnosis before the condition proved fatal.
Early diabetes researchers then suggested that those who managed type 1 diabetes successfully were more responsible and self-determined than the average citizen, discounting the socioeconomic factors at play.
That attitude was intentionally and unintentionally reinforced during the early days of diabetes advocacy, as parents of children with type 1 diabetes attempted to help lawmakers understand the differing needs of the two groups.
As Congress studied diabetes in the 70s, the early hearings were dominated by stories from those affected by type 1 diabetes who had the means to come testify, while the recorded interviews of those who lacked the means, with type 2 diabetes — which included numerous people of color — were relegated to a footnote in the final report. A wedge formed between the two groups that many advocates are only beginning to make progress to overcome, Tuchman writes.
In an interview, DiabetesMine asked Dr. Tuchman about why she chose to study this topic, and what lessons may be learned from looking back at the wrong turns made in the past.
What interested you to research and write ‘Diabetes: A History of Race & Disease’?
I am a historian of medicine, and I was finishing my second book and thinking about where I wanted to go next. I knew that I wanted to do something on the history of disease, and I’ll be honest, I wasn’t sure which disease.
My dad was diagnosed with diabetes in 1985. He was in his mid-60s and a little bit overweight, so the doctors assumed that he had type 2 diabetes. It turns out that he actually had type 1.5, or LADA (Latent Autoimmune Diabetes in Adults) — and it wasn’t caught until he had lost about 25 percent of his body weight, and they realized that his body wasn’t producing any insulin at all. Later, he was widowed, and decided to move to Nashville, where I am. Because he was here, and as I was becoming much more aware of what it meant for someone to live with diabetes, I thought, “Why don’t I look at this?”
One of the first things I came across was the discussion of diabetes once being thought of as a Jewish disease. I had long been interested in race in medicine, and I just thought, “Oh my gosh, it’s all coming together!”
When I first started, I thought that race and diabetes would be one chapter, or maybe one section of a larger book, but when I saw that there were so many different races that were labeled the most likely to develop diabetes over time, I thought that was a story that I really wanted to tell.
What do you hope that policymakers or advocates would take away from your book, as far as pushing for change?
The biggest thing is to realize that we have for so long preferred to blame disease, and specifically health disparities, on either the biology or the behavior of those who are sick, and specifically populations that have higher rates of disease.
That is blinding us to the far greater role that is determined by social determinants of health, and specifically by structural racism. That would be my really important message.
It’s not that we don’t want to encourage people to make healthy choices, and it’s not like we want to stop learning what we can about the genetics of disease. It’s really a question, first of all, of if we have limited resources, where do we want to invest them?
We’re struck by your book’s discussion of how presumptions about race inform diabetes policies. Are we seeing echoes of that within COVID-19 policy too?
Absolutely, and historians of medicine have become very popular to interview because of COVID-19. I wrote a piece for a newspaper editorial where I expressed my concern that one of the explanations for the racial disparities that we’ve been observing with COVID-19 has been that this is a population that has very high rates of diabetes and comorbidities.
My concern is that it is sounding like we could blame these high rates of COVID-19 on high rates of diabetes, whereas both of those high rates were reflective of the kinds of structural racist policies and infrastructure that define our current healthcare system. In that regard, I do think that history can provide us with a useful framework for seeing things today that would otherwise be invisible to us.
Of course, the publication of “Diabetes: A History of Race & Disease” comes during an unprecedented year of protest against police brutality and systemic racism, and at a time when the medical community is taking more seriously the institutional barriers to medical care for communities of color.
President Joe Biden recently made headlines by appointing Dr. Marcella Nunez-Smith as the first-ever presidential adviser focused completely on combating racial disparities in healthcare.
Within the circles of diabetes advocacy, there is also a push to examine the lack of inclusiveness, with events such as the first-ever People of Color Living with Diabetes (POCLWD) virtual summit and new grassroots organizations like Diversity in Diabetes (DiD) appearing on the scene.
Tuchman’s book was the subject of a recent discussion organized by Phyllisa Deroze, PhD, a diabetes advocate and English literature professor in Florida. Deroze said the book helped members of the group discuss shortcomings of their diabetes care that they hadn’t previously been able to put so succinctly in words.
“What I think her book did for us… is that it provided language where maybe we had experience,” she said. “Like, we had a personal experience of diabetes stigma, and the emotional toll of being a Black disabled diabetic person. When reading the book, you get a clearer understanding of where those experiences come from.”
Indeed, Tuchman’s research has put these experiences in context.
Like Tuchman’s father, Deroze had recently been diagnosed with LADA after years of being treated for type 2 diabetes. The new diagnosis did not come as a surprise to Deroze, who had long suspected her type 2 diabetes diagnosis was inadequate.
In recent years, she had asked two different diabetes specialists to order her a test for the autoantibodies that are a genetic marker for type 1 diabetes, but each time she was denied. Finally, her OB-GYN ordered the test, and she was correctly diagnosed. She believes she was denied the antibody test because she was a full-figured Black woman, and she too easily fit the stereotype of someone with type 2 diabetes.
“I’m grappling with my own emotions (about the missed diagnosis), and reading Arleen’s book provides me personally with the history of diabetes in America, and the racialization of diabetes in America,” Deroze said. “So now I am able to visually see the history, and how it strongly connects to how I personally felt.”
What strikes Deroze is the human toll exacted by such institutional prejudices in the medical community against people of color. She wonders how many others throughout history have not been able to receive the correct diabetes diagnosis because of the color of their skin or because they were part of a cultural minority.
“The inequalities mean being denied access to CGM (continuous glucose monitoring) and… to medication because of the price point, being misdiagnosed. It means being talked about badly or harshly or ignorantly when you are at a meeting or appointment with your doctor,” she said. “That’s the connection that I’m trying to make here.”