For the nearly 30 million Americans living with diabetes, zip code matters. The physical infrastructure of their communities–things like sidewalks, street lights and green space–affect health care outcomes, as do other community-specific metrics like crime rate and proximity to fresh food markets.
Along with self-management of insulin to regulate blood sugar levels, an important part of diabetes care is eating well and staying active. This may sound like simple advice. But what if you work long hours, and you live in an area where it isn’t safe to walk outside after dark? What if the nearest grocery store is either too far away, or you’re surrounded by fast food outlets that can feed your family for a fraction of what it costs to fix a healthy meal?
“All of my work is focused on under-resourced communities and partnering with communities to empower them and work collaboratively to find strategies and solutions that work best—and that’s not a one-size-fits-all proposition,” said Mary de Groot, PhD, associate professor of medicine and acting director of the Diabetes Translational Research Center at Indiana University School of Medicine. “Each community is unique in its priorities and its resources.”
Communities of color are disproportionately affected by diabetes. According to American Diabetes Association (ADA) statistics, Black Americans are 60 percent more likely to be diagnosed than white Americans, and they spend twice as much on health care, despite earning half as much income. Additionally, members of the Black community have a significantly higher risk of having a limb amputated due to diabetes—something that happens every four minutes in America.
In Indiana, nearly 13 percent of the adult population has diabetes. Another 36 percent has prediabetes with blood glucose levels higher than normal but not yet high enough to be diagnosed as diabetes. According to the ADA, diabetes and prediabetes cost an estimated $6.6 billion in Indiana each year. Serious complications include heart disease, stroke, amputation, end-stage kidney disease, blindness—and death.
The grim statistics surrounding diabetes have several underlying factors. Genetics and family history play a role, as do lifestyle factors including weight and inactivity. Indiana ranks among the most obesity-prevalent states in the nation.
“Some of the disparities we see have to do with genetic susceptibility, but much more of it is really the intersection of how the genes we have in our DNA interact with the environment,” de Groot explained. “There’s this new term, ‘exposome’–I love this concept. It really gets at this intersection between our genetic code and how our environment ‘turns on’ or ‘turns off’ our genes.”
One example is the heavily studied Pima tribe, a population which has one of the highest rates of diabetes in the world. While they may carry a genetic predisposition, the Pima in Mexico, who live a more traditional, active lifestyle as subsistence farmers, have much lower rates of diabetes than the Pima living across the border in Arizona—where the adult diabetes rate is an alarming 50 percent, noted Lisa Staten, PhD, associate professor and chair of the Social and Behavioral Sciences Department at IU Fairbanks School of Public Health at IUPUI.
Staten, who is also a member of the Diabetes Translational Research Center at IU School of Medicine, is leading a $7 million community impact project funded by Eli Lilly aimed at prevention and control of diabetes in three Indianapolis neighborhoods with large minority populations.
The Diabetes Impact Project (DIP-IN) is an effort to partner with engaged community members who are eager to lower the prevalence of diabetes in their zip codes. This is done primarily through the efforts of steering committees made up of local residents as well as community health workers who aim not only to provide accurate information and resources for diabetes care, but also to better understand and address the reasons behind a particular community’s struggle with managing the disease.
“We know there are barriers as to why people are not managing their diabetes. Food insecurity and housing evictions are on the rise right now. Mental illness can also be a factor,” Staten said. “The medical community needs to be getting out in the area to understand the impact of social and environmental surroundings. We need to have more collaboration and a more holistic approach.”
Too often, health care providers dismiss diabetes patients as “noncompliant” without exploring the many factors contributing to poor diabetes management.
“Being able to build rapport with patients so you can understand what is going on in their lives is important,” Staten said.
Another important job of community health workers is reaching people who have undiagnosed diabetes and prediabetes. In many communities and families, there can be reluctance to getting medical care based on fear of poor outcomes, including knowing people who’ve had amputations, Staten observed. But delaying care only increases risk for serious complications.
“When a lot of people around you have diabetes and are getting amputations or going blind, it’s a very scary thing,” Staten said. “You kind of have to be persistent with these populations. There needs to be a lot of follow up; community health workers are the people who can connect with folks and be cheerleaders.”
In the clinical environment, providers need to check their biases and ask questions, rather than make assumptions, added de Groot, a clinical health psychologist whose research focuses on the psychosocial aspects of living with diabetes, particularly the link between diabetes and depression.
“We all carry biases with us as part of our brain wiring. What we can do to counterbalance bias is awareness,” she said. “We need to make sure we are even-handed about the questions we ask and the treatments we offer to all of our patients.”
The ADA has produced a consensus report on the use of language in diabetes care and education which includes suggestions for replacing terms with negative or accusatory connotations. For instance, rather than labeling a patient as “noncompliant,” a more empathetic provider would add context: “She takes her insulin whenever she can afford it,” or “He eats fruits and veggies a few times per week.”
“How we talk about diabetes as care providers really matters. It’s our language that helps set patients’ expectations for themselves,” said de Groot, who serves as the ADA’s president for health care and education.
De Groot co-authored the ADA’s position statement on psychosocial care for people with diabetes. It promotes “patient-centered care”—providing care that is respectful of and responsive to individual patient preferences, needs, and values and ensuring that patient values guide all clinical decisions.
To specifically address racial injustice and inequities in the health care system, the ADA has initiated the #HealthEquityNow campaign, which includes a “Health Equity Bill of Rights” centered around five “C” pillars:
- Cure – Ensure diabetes research better accounts for risks facing communities of color.
- Care – Boost access to quality care for people with diabetes and prediabetes where they live and work.
- Cost – Make diabetes drugs, devices, supplies and health insurance more affordable and accessible.
- Cuisine – Help people with diabetes and prediabetes with their unique nutritional needs.
- Connect – Build community to help change behavior, partner with allies, grow advocacy and ensure people of color are central to the mission of being connected to life.
The good news for Indiana is there is a growing number of public-private partnerships and community collaborations working to address the social determinants of health affecting outcomes for people living with diabetes—things like education, income, housing, food security, social support systems, health care access and affordability, and the built environment (infrastructure) of neighborhoods.
“It’s not just nutrition and exercise,” Staten said. “Stressors in your life and environment make you focus on those stressors rather than on your own individual health. These stressors are something we are going to be focusing on more and more.”
