Community Table: The Technology Gap + Issues to Access
During our tenth Community Table discussion in 2021, Beyond Type 1 sat down with a group of experts and community members to discuss technology gaps and issues of accessibility to healthcare for people with both type 1 and type 2 diabetes, and share helpful resources and personal perspectives. Watch the discussion in full!
- Cherise Shockley, who served as the moderator for this event and has had LADA (Latent Autoimmune Diabetes) since 2004, is the Corporate Digital-Social Media Manager at Roche Diagnostics
- Manny Hernandez, who has had type 1 diabetes (T1D) since 2002, was originally misdiagnosed with type 2. At the time, education was limited and doctors assumed Manny has type 2 because he was overweight and 30 years old, but after many months of out-of-range glucose levels, his healthcare team reevaluated and realized he was incorrectly diagnosed.
- Kyomi Knight, who lives with type 1, was also misdiagnosed. Doctors originally thought she had the flu, but after her uncle—who also has T1D—heard her symptoms, he recommended they test her blood sugar.
- Michelle Litchman is a nurse practitioner and a diabetes researcher at the University of Utah.
The partial transcript below has been edited for clarity and length.
What type of technology are you currently using?
Kyomi: I’m currently using the Tandem: t:slim X2 and the Dexcom G6 CGM (Continuous Glucose Monitor), and I’m getting ready to try the new G7 when that comes out. I’m really excited for the G7. For those who don’t know, the CGM and pump pair together and they also connect to my phone. I love that my blood sugar can pop up on my phone when I’m too high or low which is amazing.
It can be beneficial, but it can also feel like a burden at times. Positives are it helps me manage my blood sugars better, it gives me freedom and peace of mind to be able to spend more time just living life. I’m really happy that I have a pump and a CGM, but there are times when I do take it off and I will still do manual injections.
Manny: I’m on the same technology as Kyomi, the X2 and paired with a G6. I’ll compliment what she said with a couple things that really stand out for me.
One quality of the t:slim X2 is it’s a hybrid closed-loop. The pump takes data from the CGM and adjusts the basal rate throughout the day to mimic your long-acting insulin. What it does is nothing short of magical, especially when you wake up. I can’t say how many times I’ve woken up to precious glucose levels by virtue of the system doing what I described.
The other thing that I find very important of that system is you can recharge the pump and connect it to your computer. When Tandem has new software, all you have to do is connect the pump to your computer and update it. That’s pretty unique, there’s no other pump in the market that does that.
Did you face any barriers when you tried to access technology or struggle to find education on options for people with diabetes?
Kyomi: Yes, definitely. When I was first diagnosed, I was 15 or 16. Around that timeframe, I was going to Kaiser Permanente in the Bay Area in San Jose, California; there they had a children’s diabetic side and they also had an adult diabetics team, as well. My diabetes team felt like I was not qualified for a pump because I was newly diagnosed and I wasn’t managing my blood sugars well.
Back then they used to call us “brittle diabetics,” so instead of educating me and my family about how insulin pumps could help me with balancing my blood sugars a lot better, they told me, “No, it’s not even something to explore, not even something to talk about, not even something to think about” because I’m not a perfect candidate for one.
When I was in my twenties and I started to dive a little bit deeper, because when I was diagnosed I got enough education on how to manage it, but I wasn’t really educated on it. I didn’t understand my body. Education and support were lacking, there was no drive or motivation to seek out more information about how it could help me. But, I started to do a little bit more research on technology, and I was told that because of the insurance I had an insulin pump wouldn’t be covered. That was something that put it out of my mind until I lost my insurance coverage because I fell off of my parents’ insurance.
Manny: We had just transitioned into Kaiser, and under my previous insurance I started using the Dexcom and I was loving it. You still have to work mentally and do adjustments with basal [background or long-acting insulin] and bolusing [giving insulin for a high blood sugar or meal], but it was extremely helpful.
It didn’t occur to me that on a new insurance, they wouldn’t cover my Dexcom. I learned about the company’s decision to take away coverage for it, and I will never forget the effort that the nurse practitioner in my endocrinologist’s office put into fighting along with me to make sure that I did get the coverage. And just like Kyomi’s experience, the kinds of documentation that were required to substantiate the claim were absurd.
At a fundamental level, you had to demonstrate that you were having a whole bunch of horrendous low blood glucose episodes. As opposed to, “This person has decent control, let’s continue using this system.” Instead, there was this disruption to try and justify what already was in place. Common sense eventually prevailed and thanks to the hard work that the nurse practitioner put in, we were able to secure it.
Do you believe that disparity in tech and access are better quantified now?
Michelle: There have been some studies to highlight the fact that people of color are not offered diabetes technology as often as their white counterparts.
If you think about the way technology is built, it is mostly in English. Based on the population, we know that we have demographics that speak multiple languages here in the United States, but the technology is going to be very limited to those who speak English and, for a couple of technologies, those people who speak Spanish.
There’s this polarization of who should get technology, and there are two camps. One is that anybody should get technology who would benefit, and that’s anybody who wants technology would likely benefit from technology. Two, then there’s this other camp that says, “You only get technology if you can prove to me that you can get your A1C to a certain range.” That can be really challenging because for some individuals—the hardest part about having diabetes is checking their glucose, or the hardest part of having diabetes use is to give insulin injections.
If you can’t address the hardest part of having diabetes by offering a solution of technology that could really help that part, you’re just creating more challenges for everybody.