While Type 2 diabetes knows no demographic boundaries, it is a disease that has had a particularly strong negative impact of the African American and Black communities. Type 2 diabetes contributes to hypertension, stroke, heart disease and other health afflictions that exacerbate the disparities gap in health and well-being in these communities.

While there are medications to treat Type 2 diabetes — and people get prescriptions — it doesn’t mean they will take the medicine. This phenomenon has been particularly acute in African American and Black communities. And so Shiyanbola and her team set out to find out why. And they spent the first few years of their study just listening to people.

“We spent time just doing focus groups with African Americans and Black Americans in Madison and Milwaukee,” Shiyanbola said. “We just talked with them to understand what are some of the reasons why they don’t take their medicine. We just started from the basic foundation. We don’t want to come with the answer because the work that we do is very community engaged. We feel that we need to build trust with the community. We want to develop programs that work for the community. But we need to start with an understanding of what the reasons are first. And that is one of the things that we heard about, the history of discrimination experiences, not just past discrimination experience and historical circumstances like slavery that have led to the distrust of advisors, but even current discrimination experiences. The question is, ‘If my provider tells me to take a prescription, do I trust the provider enough to do that recommendation to take the medicine?’ Most of the time, the provider is just handing the prescription to them. ‘Well, I don’t really trust you, so am I going to trust what you have given me?’ And so these are some of the reasons why sometimes we see that influence of these experiences influencing why they may not take their medicine. There were other things that came up as well such as the communication with the providers, not asking questions of the providers also stemming from some of the historical and current experiences. We have people tell us, ‘Well I don’t ask my provider questions.’ If you have not developed trust and built trust with that provider, you get the prescription and you want to question them. ‘What are the side effects of this medicine? What is it going to do to me? Why am I even taking this medicine? Why is it necessary?’ But there is no question asked. There is no empowerment. There is no self-advocacy. And because of that, we take the prescription home and then we don’t take the medicine.”

They also learned that there was a lot of misinformation out there.

“People have heard from the community, ‘Diabetes is something that is a curse from God,’ for example,” Shiyanbola said. “And so because of some of this misinformation, there is no one to educate them of the causes of diabetes. The providers may not be doing that. And there is no program to educate the people. ‘This is actually what causes diabetes. This is actually how to control diabetes. And yes, having God help you, we should think about it as a positive way to enhance you to take control and not think about it as a negative aspect to the deterioration of your health. But no one is doing any of this. That is why we wanted to study all of this. All we’ve been doing so far is saying, ‘This is the data. African Americans and Black people don’t take their medicines.’ No one is taking the step up to say, ‘Let’s understand why and use that information that we heard from the community to now develop a program.’” And that is exactly what Shiyanbola and her colleagues have done. They will be rolling out Living Well and Empowered! In Spring 2023 and is looking for participants.

“It is a 6-month program that teaches African Americans and Blacks to become empowered and self-manage their Type 2 diabetes,” Shiyanbola said. “It consists of two months of diabetes education classes that explain how to manage diabetes, four months of community health worker support, and possible phone support. Participants will receive $200 over the study period, with $10 just for completing the first phone screen.”

And most importantly, it is African American led and taught. As Marshall McLuhan said, ‘The medium is the message.”

“We ensure that these programs are led by African American and Black leaders,” Shiyanbola said. “That is currently not being done. In the state of Wisconsin, most of the people leading these programs are majority people. There may be two leaders that lead these diabetes programs in our state. We cannot talk about diet and healthy eating when who else can do a better job of talking about soul food? How do you talk about healthy eating that fits the food and the culture and what they are used to eating other than people who are actually from that community?”

If you have Type 2 diabetes and want to become empowered in treating it, join Living Well and Empowered! by calling 608-575-0160. It could literally change your life.

And that is what we are doing now. We spent all of that time doing that work. And over time, we’ve been testing the programs. And now we are launching that new program that we are going to be doing in the spring.