What does race have to do with diabetes? Especially in these tumultuous times, we thank advocate Mila Clarke Buckley for her willingness to explore the connection between race, ethnicity, and health disparities for minorities with diabetes.
I remember when I was first diagnosed with type 2 diabetes.
I felt lost and confused, and like I didn’t have the resources I needed to tackle it.
While I had health insurance and a stable job, my income still forced me to make choices about my care. I couldn’t afford specialists like diabetes educators or an endocrinologist because my income didn’t allow it, but I still wanted to learn.
I also didn’t feel like there were culturally competent resources out there to help me live with diabetes in a way that made sense for my life. I didn’t feel like my health team understood that my Jamaican culture and Jamaican food were important to me. I didn’t want to eliminate them; I wanted to find healthier ways to enjoy foods I loved.
Now I have privilege. I have a grasp on my self-management and the resources to take care of diabetes in the best way for me. But what about those who don’t? How does race play a role in their care and health outcomes?
We have a responsibility of directly addressing race — especially when it comes to health.
Racism is a
It has limited the lives of Black people, Indigenous people, and other People of Color in obvious ways like segregation, police violence, and less visible forms like microaggressions,
For people with diabetes, these biases can also impact care and health outcomes. So how exactly does race play a role?
According to the
With diabetes cases on the rise,
Although People of Color experience higher rates of both diagnosed and undiagnosed diabetes, there are inequalities in the care they receive and access to the healthcare system.
Socioeconomic factors like employment, education, income, environmental factors, lack of access to supportive diabetes care, and language barriers can diminish positive outcomes for people with diabetes in minority communities.
And while healthcare is a complex system with many problems that need fixing, there’s a need to focus on the connection between racism and diabetes health outcomes for marginalized communities.
Both type 1 and type 2 diabetes have genetic ties. While genetic markers can predict susceptibility for some people with type 1 diabetes, a person with a relative who has type 2 diabetes is likely to be at increased risk for developing it.
In the United States, according to a
The
Geography, which often influences the factors above, can also influence diabetes risk.
For example, in China type 1 diabetes rates are 10 to 20 times lower than they are in Europe, Australia, and North America. Meanwhile, countries like Finland have the
In the United States, diabetes may impact minority communities at an unprecedented rate in the next 3 decades.
“The burden of diabetes represents an even greater challenge among racial/ethnic minorities in the United States, which are predicted to comprise half of the total population in the country by the year 2050,” said Dr. Sandra Weber, past president of the American Association of Clinical Endocrinologists.
In 2017, the nonprofit
The study identified disparities in outcomes between the two populations relating to glucose control possibly based on the glycation of hemoglobin. Results showed that A1C levels were about 0.8 percent higher in Black patients compared with white patients. It’s important to note that the study was limited in that there were not enough participants with A1C levels below 6.5 percent to extend the generalized outcome to those patients.
A lack of follow-up care is another reason for diminished health outcomes in minority populations.
A language barrier is one obstacle that can negatively impact follow-up care.
A study from the American Diabetes Association (ADA) noted the limitations in follow-up care for patients whose first language isn’t English in phone-based disease management programs.
Research indicated that patients who spoke a first language other than English but went to a primarily English-speaking clinic might have a barrier to participating in their care — even when they had access to translators.
Although phone-based programs met patients where they were, they still did not reduce disparities, or improve diabetes care and outcomes for patients.
Education and self-management are other areas where People of Color with diabetes feel left behind.
In a Centers for Medicare and Medicaid Services (CMS) study, Black patients were as likely to perform diabetes self-management checks as White patients.
Still, they were less likely to report having the knowledge they needed to keep their blood sugar in range.
Additionally, health-related outcomes like high blood pressure and eye problems were worse for minorities, even though minority patients reported more doctors’ visits each year.
These kinds of barriers present a real problem for patients over time.
In fact, this
“In the long term, this may affect people with diabetes through higher rates of complications, earlier morbidity, and mortality,” Weber says. “It’s a real issue.”
Health outcomes are not always determined by personal choice and adherence alone.
“Diabetes is not just a medical condition,” says Ronald McGarvey, PhD, an associate professor of industrial engineering and public affairs at the University of Missouri in Colombia, Missouri. “It’s tied up with a whole host of things in the individual’s environment and everyday life beyond the medical aspect.”
Dr. McGarvey says that issues like transportation and affordability can affect outcomes for patients.
Of course, COVID-19 magnified the inequities seen in Communities of Color living with diabetes. Reports about the effects of COVID-19 have pointed to a disproportionate impact on racial and minority ethnic groups, and people with diabetes. That’s also meant longstanding financial burdens for People of Color have become even more of a pain point during the pandemic.
“Medical expenses for people with diabetes are nearly two and a half times a person who does not have diabetes,” former ADA CEO Tracey D. Brown told DiabetesMine in 2020. “Now you add on top of this, this COVID-19 crisis, the loss of jobs, the financial burden is potentially greater.”
Brown noted that now that healthcare accessibility and health disparities are in the spotlight, there’s an ability to push for an environment where all patients have access to proper care.
“The goal is not to stop fighting and advocating for the things that we do right now that are helpful,” she said.
While socioeconomic factors play a role, so does overall patient care.
Healthcare systems aren’t always establishing a quality of care that meets the needs of their minority patients.
A study co-authored by Maggie Thorsen, Andreas Thorsen, and McGarvey noted the difference in care for minority patients versus white patients in community health centers located in majority-White neighborhoods.
“If you contrast the community health centers that treat predominantly Whites versus predominantly non-Whites, we see that patients have a higher likelihood of having uncontrolled diabetes if you’re at a center that serves predominantly non-Whites,” McGarvey says.
“But when we look at the combination of both the makeup of the patients and the racial composition of the area where the patients live, we find that diabetes control is even worse in places that serve racial minorities who are living in a predominantly white area,” he adds.
The study also highlighted that community health centers in minority-majority neighborhoods usually had better patient outcomes.
McGarvey offers a possible explanation for the differences in outcomes but says more research is needed to determine why.
“Beyond just the greater existence of the safety net programs, perhaps there’s also a better outreach in majority-minority communities. That doesn’t occur in the less segregated communities,” he says.
Who benefits from diabetes technology?
At the 2020 annual meeting of the ADA, researcher Randi Streisand, chief of psychology and behavioral health at Children’s National in Washington, D.C., highlighted racial disparities in diabetes care:
- There’s generally a prevalence of higher A1C levels in People of Color than in Caucasian youth.
- Caucasian and Latinx youth are more likely to be told to check glucose levels four times daily versus African American youth.
- According to
T1D Exchange studies , Latinx and African American youth are less likely to be offered an insulin pump, even though ample data shows that pump use is associated with improved health outcomes.
“The fact that studies of diabetes technology use are mostly with Caucasian individuals is worrisome,” Streisand noted.
Organizations, researchers, and physicians have an opinion about health outcomes for people with diabetes.
What do patients themselves have to say about how needs are met for people living with these disparities?
Jai Smith, a woman with type 2 diabetes, says that specific barriers keep her from getting adequate care. She says that race does play a part in that.
“I don’t think I’m well represented when I go to the doctor. I do not feel supported or heard,” she says.
Smith adds that there’s little diversity in providers to choose from, and it’s hard to find someone who has a cultural understanding of what it’s like to live with diabetes.
“There has always been little to no options in choosing a good doctor or having the option to select your own healthcare provider. There is a really short list of healthcare providers for Black people.”
From her point of view, her doctor rarely addresses her concerns or answers questions she has about labs or ways she can manage. She’s just often just handed literature, without a dialogue about her pain points.
“There is absolutely no conversation about results or how I feel. Just the words ‘lose weight, try to eat healthy.'”
For her, financial burdens can also be a burden for self-management.
“I often have to choose when to go to doctor’s appointments because of the cost of my appointments,” Smith says. “I also have to choose between groceries and medications.”
For her, the potential complications weigh heavily.
“Diabetes has not shown good outcomes in my family,” Smith says. “Three deaths from complications, two relatives with amputated limbs, and two more relatives having complications and not doing well.”
In contrast, diabetes advocate Cherise Shockley who lives with latent autoimmune diabetes in adults (LADA), says that the privilege of access to generous healthcare coverage through the U.S. Armed Forces and a reliable network of responsive doctors has helped her thrive with diabetes.
“I am fortunate,” Shockley says.
“I can email my endocrinologist and say ‘hey, can I add some metformin to my treatment?’ or ‘this insulin isn’t working by itself.’ A lot of people don’t have access like that,” she says.
Experts say health systems can do more to help patients achieve better health outcomes.
Weber says awareness is vital for health providers while supporting these marginalized communities. Only with awareness can they find tangible ways to help.
One idea is tagging patient records to alert providers and remind them of culturally sensitive needs. “Electronic medical record reminders are helpful for individual healthcare contacts,” she says.
The CMS suggests adapting culturally appropriate health education to improve blood sugar control and encourage better outcomes for minority patients. Fortunately, a lot of work is being done to create materials that are linguistically and culturally appropriate for different groups of people.
The study co-authored by McGarvey also noted that community health centers with more behavioral health staff had lower rates of patients with poorly managed diabetes. So if possible, these centers should hire more behavioral specialists who could provide needed support of People of Color with diabetes.
Patients themselves can also make themselves a part of the process.
To address some of the adverse outcomes, Shockley says that diabetes patients can take the lead in their care by understanding that they have the power to ask as many questions as they need to for clarity and find the right care team for their needs.
“If something’s not working for you, don’t just give up,” she says. “If you give up, you’re not advocating for yourself, and you’re not getting the best care that you deserve.”
Everyone everywhere deserves good health, and good care.
To change the trajectory of health disparities, patients need affordable care no matter where they live, health education that meets them where they are, and resources that help make diabetes easier to manage regardless of ethnicity or economic status.
Health systems also have to recognize that they need to do more to meet the needs of minority patients.
We can only offer that when we pay attention to what causes disparities for minority populations and address them head-on.
As the American population becomes more diverse over time, our healthcare system must change to avoid leaving marginalized communities behind increasing our negative health outcomes.