How come so many vulnerable people living with type 1 diabetes aren’t using insulin pumps or CGMs?

This is the question Ashby Walker, Ph.D., Director for Health Equity Initiatives: University of Florida Diabetes Institute and colleagues, addressed in their recent study. This powerful research reveals the core issues behind why some of the most vulnerable communities with type 1 diabetes underuse the very technology that could contribute to improved diabetes self-care.

We interviewed Dr. Walker to provide additional insights into their findings and suggestions for the future.

In their groundbreaking study, “Barriers to Technology Use and Endocrinology Care for Underserved Communities with Type 1 Diabetes“, published in Diabetes Care, August 2021, we learn through the testimonies and experiences of people living with type 1 diabetes, the surprising reasons they have a lower rate of insulin pump and CGM use than those with higher income levels and generational opportunities.

This study captured data through focus groups from underserved communities by intentional recruitment efforts aimed at including perspectives of low SES and racially diverse people living with diabetes in Florida and California. In the Florida group, 43% used pumps and 38% used CGMs. In the California group, 69% used pumps and 63% used CGMs.

The study targeted higher-risk individuals who may not see endocrinologists on a regular basis and included those with type 1 diabetes and:

• A1Cs greater than 9%.
• Those hospitalized for DKA in previous year and those who had no-showed to two or more visits.
• Were seen for primary care needs at a Federally Qualified Health Center.
  

What is Biggest Barrier to Technology Use?

Question for Dr. Walker: When reviewing your study results, I was very surprised to discover that the most commonly identified barriers to technology use were related to information exchanged in face-to-face visits. How do you think we can best address this issue?

Raising awareness about this barrier is a critical first step as we must name something in order to address it. Addressing the issue will require multi-layered interventions.

First, industry and insurance-driven rules requiring conditions to be met prior to obtaining a devise (i.e. HbA1c under some threshold) creates barriers for providers as well as people living with diabetes and can erode communication in clinical encounters. Change at the policy-level is needed to address the issue.

Second, provider-level interventions are needed to ensure that all individuals are given the opportunity to learn about available technologies in ways that minimize any implicit bias.      

-Dr. Ashby Walker

In the study, participants shared that they were actively seeking to use technology to improve care, but were often blocked by the provider through discouraging feedback. They grasped the irony of wanting to improve glucose management but being hindered by their elevated A1cs.

Here are some participant quotes from the study:

“I have had my [endocrinologist] recommend that I get my A1C down below 7 before they will even attempt to let me use any kind of device [pump or CGM]. With my lifestyle and work and everything, the way it is, it’s super hard to manage diabetes as it is, which personally I think that would be a tool that would help me out a lot.” –Florida Focus Group Participant.

“I tried to get on the pump, and he [endocrinologist] told me I needed to lose weight and the only way I was going to get on a pump was to lose weight and to be in a lot of control.” –California Focus Group Participant.

What do the ADA Standards of Care Say?

Insulin pump therapy may be considered as an option for all adults and youth with type 1 diabetes who are able to safely manage the device.

Actually, if you read ADA Standard of Care 7 in its entirety, there is no mention of getting A1C or bodyweight to target before starting pump therapy and the same is true for CGM.

And, in the 2021 ADA Standards of Care, they acknowledge that the use of insulin pump therapy in the U.S. shows geographical variations, with pump therapy more commonly adapted by individuals of higher socioeconomic status as reflected by race/ethnicity, private health insurance, family income, and education.

Furthermore, the ADA calls out that these barriers need to be addressed to increase access to insulin pumps and other diabetes technology and decrease health disparities.

This research provides an opportunity to honestly reflect on how our face-face encounters make such an impact on an individual’s decision to seek ongoing care and collaborate with providers.

Take Home Messages to Improve Care

Question for Dr. Walker: What are some recommended communication approaches or examples so health care professionals can build trust and collaborate with high-risk populations living with type 1? 

There must be intentional efforts to listen and learn from underserved communities living with diabetes on the part of health care professionals. We gather at scientific conferences and are accustomed to believing that degrees, credentials, and publications in high-impact journals give someone merit to impart wisdom, yet, we often overlook the invaluable expertise of the most important stakeholder: people living with diabetes.

Also, the use of advocates like community health workers and peer supporters in clinical counters and as a liaison between clinical encounters can reduce the shame and feelings of judgement and creates powerful pathways for social network support and information sharing.   

Dr. Ashby Walker

How we communicate with people with diabetes make such an impact on their willingness to seek care.

I want to thank Dr. Walker and her team for the beauty of this study and the inclusion of lengthy, insightful testimonials from the participant focus groups, which clearly revealed some unexpected barriers for vulnerable individuals seeking diabetes care. These powerful stories reveal the emotional toll for those living with type I diabetes who are blocked from seeking to improve their well-being through the use of technology.

You can read the complete article here “Barriers to Technology Use and Endocrinology Care for Underserved Communities with Type 1 Diabetes“, published in Diabetes Care, August 2021.

If you would like to contact Dr. Ashby Walker, you can reach her via email at [email protected].

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Living with Type 1 can be Tough. Embark can Help!

Managing diabetes can be tough! Something that people rarely talk about is how tough type 1 diabetes can be and how many people find diabetes to be stressful and challenging.

That’s why we are excited to share an opportunity for people living with type 1 diabetes to join a new NIH-supported study that is part of a collaboration between T1D Exchange and the University of California, San Francisco (UCSF).

Note from Coach Beverly

I have had the pleasure of working as an Embark facilitator for the past year.

I can personally share with you that this program offers so much meaningful hands-on problem solving and support for those who join. Participants not only receive practical information but gain valuable insights into approaches for self-care.

I highly recommend this program to anyone with type 1 diabetes who is feeling frustrated and tired and ready to make changes with the help of a supportive team!

Embark Program Details

The program begins with a group workshop (8-12 adults with type 1 diabetes) (held virtually online on a Saturday), followed by online video group meetings and/or individual phone calls with either a psychologist or Certified Diabetes Educator.

The program interventions are strictly behavioral, meaning that participants will not be asked to change or try any new medications or devices.

Participants will receive gift cards for their time and there are no costs to you or to your insurance. There is no age limit to taking part, you just need to be 19 years or older!

If you know people living with type 1 diabetes, please share this information with them. Our hope is that they will be interested in learning more about this exciting new program.

Research Participants Needed:
Are you…
– An adult (19 years +)
– Diagnosed with Type 1 Diabetes for at least 1 year
– Unhappy with your recent Hemoglobin A1C of 7.5% or higher
– Feeling overwhelmed, frustrated, “burned out” with living with diabetes
If you answered YES to the above questions, you may qualify to participate in EMBARK. The purpose of this study is to work compassionately to help you better manage your distress with diabetes and to reach your management goals.

More info on Embark Website

Or you can call: 1-855-850-3599 (toll free) or email us at: [email protected]. Thank you, UCSF EMBARK Team

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