NBC NEWS
When Phyllisa Deroze was told she had diabetes in a Fayetteville, North Carolina, emergency department years ago, she was handed pamphlets with information on two types of the disease. One had pictures of children on it, she recalled, while the other had pictures of seniors.
Deroze, a 31-year-old English professor at the time, was confused about which images were meant to depict her. Initially, she was diagnosed with Type 2 diabetes, as shown on the pamphlet with older adults. It would be eight years before she learned she had a different form of diabetes — one that didn’t fit neatly on either pamphlet.
The condition is often called latent autoimmune diabetes of adults, or LADA for short. Patients with it can be misdiagnosed with Type 2 diabetes and spend months or years trying to manage the wrong condition. As many as 10% of patients diagnosed with Type 2 diabetes might actually have LADA, said Jason Gaglia, an endocrinologist at the Joslin Diabetes Center in Boston.
Deroze and three other LADA patients who spoke with KFF Health News, all Black women, are among those who were initially misdiagnosed. Without the correct diagnosis — which can be confirmed through blood tests — they described being denied the medicines, technology, and tests to properly treat their diabetes. Three of them wonder if their race played a role.
“That does seem to happen more frequently for African American patients and for other minoritized groups,” said Rochelle Naylor, a pediatric endocrinologist at the University of Chicago who researches atypical forms of diabetes. “Doctors, like any other person walking this planet, we all have implicit biases that impact our patient experiences and our patient care delivery.”
Black patients have long struggled with bias across the U.S. health care system. In a recent KFF survey, for example, 55% of Black adults said they believed they needed to be careful at least some of the time about their appearances to be treated fairly during medical visits. Hospital software used to treat patients has been investigated for discrimination. Even a common test used to manage diabetes can underestimate blood sugar levels for patients who have sickle cell trait, which is present in nearly 1 in 10 African Americans.
LADA ostensibly has nothing to do with race, but misconceptions about race, weight, and age can all lead doctors to misdiagnose LADA patients with Type 2 diabetes, said Kathleen Wyne, an endocrinologist who leads the adult Type 1 diabetes program at Ohio State University.
Type 2 diabetes develops in people, often over age 45, whose bodies cannot properly regulate their blood sugar levels. Type 2 accounts for at least 90% of diabetes cases in the U.S. and has a high prevalence among African Americans, Native Americans, and Hispanic populations. It can often be managed with lifestyle changes and oral medications.
LADA is more akin to, or even thought to be another form of, Type 1 diabetes, an autoimmune condition once dubbed “juvenile diabetes” because it was most often diagnosed in children. Type 1 occurs when the body attacks its cells that produce insulin — the naturally occurring hormone that regulates blood sugar by helping turn food into energy. Without insulin, humans can’t survive.
