Opportunity Disparities

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This is Beta Cell, a show about people living with type one diabetes. I'm Craig Stubing.

Ashley: I am a researcher who really focuses on really understanding what we know about differences in health outcomes, particularly for racial and ethnic minority children and young adults.

That's Ashley Butler, a pediatric researcher who presented a paper at the American Diabetes Association Scientific Sessions last year, which looked at racial and ethnic differences in Type One Diabetes self management behaviors.

Now we all know that different people manage their Type One Diabetes a little bit differently. It could be as drastic as using a pump versus syringes, or as small as if we pre bolus before meals or test our blood sugar before going to bed. These little details make differences in our own lives. So if we look at large groups of people with type one, we can see if there are similar behaviors that impair management, and then try to figure out what's causing them.

The importance of understanding this research became really obvious during the Black Lives Matter protests last year, when JDRF asked three black women to share their stories of living with type 1 diabetes, a lot of people attack these women for making diabetes about race. But because of the way healthcare and the socio economic system we live in works, especially here in the US, not everyone has the same opportunities to manage their type one diabetes, whether that's doctors, assuming you have type two, because of your race, the technology you can access because of your insurance coverage, or literally anything else in your life, since it all affects diabetes.

How we're able to manage this disease has a lot more to do about the cards we're dealt with, before we're even diagnosed then are pull yourself up by your bootstraps American culture would lead us to believe. So it's really exciting to see how people like Ashley: are researching this to see what we can do to make sure everyone with type one diabetes can have the same opportunities to lead healthy lives.

Ashley: Now I really focus on pediatric and young adult populations. And with Type One Diabetes, in particular, it is a condition where the day to day management is really something that is really placed on families and adolescents and young adults to manage. And it's something that's really demanding, you know, it doesn't stop. It's unrelenting. And so, because of that, you know, I became really interested in thinking about how me as a psychologist or behavioral scientist can help support families to live well with diabetes.

But also, I think, around the time that I started to study that more become familiar with the research, at least the research literature around it, I also, that was around the time where a lot of studies were coming out that showed African American and Latinx individuals in particular, were found to have more negative health outcomes and fairly early after diagnosis. And so to think about, you know, if there are gaps that begin that early, and continue, you know, there's something that we really need to be taking a look at and helping support families really early on. How

Craig: Is it that you know, that there are worse outcomes for African American and Latin next individuals?

Ashley: There have been really well done studies that look even you know, that follow people from the time that they're diagnosed and follow them, you know, a year or two years later. And so being able to look at those trends in in A1c over time and to document that people of color, on average, you know, as a group, it's not to say every person within that group, but on average, individuals within those racial and ethnic groups are more likely to have higher hemoglobin a one c that begins early and that persists over time. So if you look over time, you know, it's not that those things are going away.

There's also data that shows us that in particular African American black individuals who have type one, are several times more likely to even die from diabetes related complications. And then there's also, you know, not just these health outcomes. But the studies have also shown that people of color are less likely to have the diabetes technologies, which are something that can help facilitate positive health outcomes. We need to think differently about the ways supports are provided to help people of color living with diabetes.

So that's the eventual goal and to reduce those gaps that we see doing my own research to look maybe closely at other factors that haven't been examined to see if there are differences in for example, things like diabetes distress, and that's something that we could help improve, maybe that's going to help improve a health outcome, or, you know, is it something about self management, are there differences in access to technology, but it's not just looking, you know, into those large studies.

What I also do is actually talk to people of color, living with diabetes, to understand what their experiences are, like, with regard to their day to day management, what are the challenges, because, you know, it's also through hearing people tell their experiences, and being able to look at that, you know, across a number of individuals that we may come up with some additional ideas to help support them.

So for example, we found that hearing parents talk to us that they really have particular difficulty is not having flexibility in their work environment, so not having the freedom they need to take off work without that being a significant barrier to them, you know, making the money that they need to take care of their family, it could be rules in the workplace, like not being allowed to have a cell phone. So if the child's school needs to contact them, they're not able to have their phone on them, if they, you know, their child has technology, where they're able to monitor what's going on with their child while they're away from them. On the phone, they're not able to do that we know that minority individuals, adults are more likely to experience those kinds of restrictions in their workplace. So that's a really significant barrier to how they're able to take care of their child well on a day to day basis.

And so what we wanted to do was really look at are their differences in self management behaviors? So things like bolusing, or recording their blood glucose? For example? Are there differences in those day to day management behaviors across groups? Because perhaps if there are, then that's something that we could think about what are strategies that we could use or supportive programs to support African American and Latinx individuals.

And so that's what our study looked at and found that in particular, for African American young adults, that there were less frequent engagement and certain self management behaviors, you know, how often they are checking their blood sugar each day with something that was less frequent for African Americans, for example, in that particular behavior is related to A1c. So from that, we could say, Okay, well, maybe that's something to think about, you know, what kind of strategies or something in the healthcare system to help provide support for them in the day to day management for improving hemoglobin eight, one c over time.

Craig: It's hard for everyone. But if people don't have the same access to even something as basic as test strips and insulin, they just don't have the same opportunity to succeed. It's like playing a football game with no quarterback, right? Like you, you could win, you could, you know, work really hard, but you're just put at this disadvantage. Absolutely. What is it that ultimately, in sort of a macro perspective, causes these disparities?

Ashley: What the data is starting to really show us is that people of color really don't have the same opportunity to live well with diabetes. And it's because of certain unique barriers to care and unique barriers to day to day management. As I mentioned, there may be poor quality communication with health care providers, perhaps even discrimination in the healthcare environment. People of Color also directly experience more stress just in general related to racism and discrimination in this country and that likely compounds diabetes related distress which could be a major roadblock to date, to day management of diabetes, we also know that you know that there are differences in terms of access to insurance and insurance coverages.

There are many studies that show that that also differs by race and ethnicity. And so, you know, it's thinking about the need to really address the quality of care that's provided in the health care setting to reduce discrimination, improve communication, and that setting with regard to the stress, general life stress that's related to racism and discrimination for people of color. You know, it's also important that we think about ways to help bolster resilience in people of color and creating safe spaces for them to receive shared support around those experiences, you know, validation for those experiences, but also, you know, sharing of strategies, and, you know, stories of strength and success with regard to living well with diabetes, because it's not, you know, that I'm saying that nobody's living well, who is a person of color because there are, so what are things that they could share among each other about ways to be resilient in those situations, and then from talking to families, it's that unheard of that you will hear them say that they have never met another family who has a child with type one. And especially not another person of color.

Craig: And if you don't meet other people with it, you don't really have a community,

Ashley: Right, you feel isolated. And part of our program is to offer virtually groups for families who have a child with with type one, and they are very much appreciative of that, because they're like, oh, wow, this is the first time that I'm able to connect with another family who has a child with type one, and they often, you know, are connected with with each other after our programming ends. They're very, you know, they they, I think, really appreciate the opportunity to have that connection, and to grow their community.

When we're looking at people of color, it may be important to think about that, for example, African American and Latinx individuals that also may have different experiences. And you know, even though they're more likely to have a more negative health outcome, it's not to say that the reasons are the same for on average for each group. It's, you know, as we move forward, and we're listening to people's voices, that there may be some things that we need to consider that may be different for African American or that may be different or Latinx individuals.

Craig: Yeah, not necessarily a one size fits all solution.

Ashley: Right? Absolutely. That's a great way to put it. I think one of the things to make sure that the way that organizations are supporting individuals is truly inclusive and you know, has a wide reach and a wide embrace that the voices of people of color are also important within those organizations. When strategies are being you know, created for various events or initiatives or strategies. I think it's important, you know, that there's a diversity of voices being heard and, and sort of at the table to make sure that the reaches is really wide and the whole community feels included.

Beta Cell is produced, recorded and edited by me, Craig Stubing, and our theme music is by Purple Glitter.

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I'm Craig Stubing. And this is Beta Cell.