Black History Month & Diabetes
No matter who you are, diabetes presents its own set of unique struggles...
But what happens when those struggles are compounded by biases based on what you look like? Unfortunately, stories like this are all too familiar for many of our friends. It is with a sense of responsibility to the health outcomes of our community that we join the conversation about Black diabetic experiences, especially during Black History Month. Founded in 1976, the essence of this time is to leverage history in a way that highlights the importance of Black communities to the creation of America and American culture. While we celebrate the wonders that black communities provide our culture, we must in the same breath be cognizant of ways we can support and empower Black Americans to live longer, healthier lives. As you will see in two of the stories we highlight today, bias in diabetes care acts as a large obstacle to the ultimate goal of positive health outcomes for all.
A key component of the stories we’ll be sharing is the concept of intersectionality. This theory asserts that each individual has their own set of struggles or scenarios that they have felt marginalized or oppressed in, as well as different social identities that impact how each person experiences the world. Additionally, it acknowledges that these identities can be layered upon each other to create different states of oppression, or even empowerment. For example, a disability like diabetes can be one social identity, your gender another, your race, another, and so on.
The first story we want to bring attention to actually comes from an expert on the topic of intersectionality, Dr. Phyllisa Deroze. Among many other wonderful things, Phyllisa is a professor who writes about the intersectionality of health, race, gender, and disability in literature and popular culture. Coincidentally enough, her first misdiagnosis was this time of year, almost a decade ago on Feb 15th. It wasn’t until 8 years of living with type 2 diabetes (while trying to advocate for additional antibody testing) that she learned she didn’t have Type 2 at all, but Type 1. Immediately, she noticed the quality of her diabetes care changed, as well as the perceptions that her healthcare providers had of her. In a previous interview we had with Phylissa, we dove into why her diagnosis unfolded the way it did.
“What do you think the root of [your misdiagnosis] is? It’s frustrating that you [need] scientific evidence to be taken seriously because you’re so committed to your own health… and it takes a scientific experiment on your own body to convince your endocrinologist that you need an antibody test. What kind of stereotypes lead to that denial?
“I think there was definitely ageism involved because I was 31 years old, and I think that the myth that is perpetuated is that people with type one are teens and kids. They aren’t doing antibody testing on a 31-year-old. I also think race has a lot to do with it. As a Black woman when we hear T1D we have an image of a white person, and so it’s like ‘oh, you’re a black person with T1D?’ Then, I also think my body weight. I’m an obese black woman, and it’s like “oh, fat, black, adult? Must be type 2. And for me, it’s hard enough to accept those kinds of things when I’m initially diagnosed–that’s one thing. But it becomes a crime…it becomes an incident that arises anger when I ask [for additional testing]…I asked for an entire year, more than one endocrinologist’.
Phylissa’s story evolves when she connects with culturally competent medical providers who help discover her true diagnosis of LADA (Latent Autoimmune Diabetes in Adults).This is a slowly progressing form of autoimmune diabetes, also referred to as "Type 1.5 diabetes" and requires different care, putting people like Phylissa who are misdiagnosed under great danger.
Unfortunately, we don’t have to look far to find another example of medical bias leading to misdiagnosis. Another friend of ours, Mila Clarke, shares a similar story on her blog. Read an excerpt below:
“About a year into my [T2D] diagnosis, I talked to someone who said my diagnosis didn’t sound right at all, that I should get the GAD65 test…I asked a couple of doctors, but they shrugged me off. ‘Your family history, and weight signal T2D’...When I got my A1C results in June, I knew something else was up”.
After Mila’s second diagnosis of LADA, she was left with a lot of unanswered questions,
“Why did my first doctor never test me for antibodies before confirming my diagnosis? Especially at my age? Why did losing 30 pounds in two months not signal him to say ‘something else is up?’ Why was the assumption ‘you’re overweight, so you must have T2D’ without the confirmation? Why did it take 4 years for someone to finally listen to me and recognize that I was trying my hardest? How many years has ‘uncontrolled’ or ‘non-compliant’ been in my chart for no damn reason? Am I more at risk for complications now? I don’t know the answers to any of these questions. I probably won’t ever know”.
Due to the lack of awareness and standardized diagnostic criteria for LADA, there are thousands of other individuals in the same exact situation as Mila and Phylissa. As you can imagine, this experience is extremely difficult for anyone to endure. However, It is imperative to acknowledge that due to long withstanding racial inequities in healthcare, this is prominently an issue impacting Black Americans and other people of color.
Regardless of the specific kinds of biases that feed into misdiagnosis, it is important to empower every single person to be the biggest advocate of their own health. Medical professionals may try their best, but we must also remember that they are people, and not exempt from something as human nature as bias. This bias may not even come from an individual level but from a systemic level. One clear example of this is the test used to diagnose type 2 diabetes itself. Glycated hemoglobin or an HbA1c test is used to diagnose type 2 diabetes. Not until recently have we learned that this test does not account for an African American genetic variant that significantly reduces the accuracy of diabetes screening for this population. This is why additional antibody testing is now recommended to ensure misdiagnosis does not happen in African American patients. One author of the study, Dr. Ines Barroso explains further,
“…We estimate that if we tested all Americans for diabetes using the HbA1c test, we would misdiagnose diabetes in around 650,000 African Americans. However, the HbA1c test remains a suitable test for diagnosing and monitoring diabetes for the majority of people.”
With the potential of hundreds of thousands of Black lives at stake, it is imperative to propagate this information to create more awareness around medical bias in the diabetes community. There are many other scenarios where race plays a factor in diabetes care that we are unable to cover in one blog. We urge you to listen to and read about the experiences of other Black individuals to view the world through a more holistic lens and create a better future. A very special thanks to Dr. Phylissa Deroze and Mila Clarke for sharing their diagnosis stories publicly. Your transparency in this space creates hope and directly aligns with our respect for the knowledge and experiences that drive a better future. Conversations like these make our Genteel universe what it is, so stay tuned on social this month and beyond for more insight from community members. Wishing everyone healthy sugars and an informative Black History Month.