by Veronica Elsea
Have you heard the news? Are you now joining many of your peers and managing your diabetes with an insulin pump? Are you still being told that people who cannot see the screen should not use an insulin pump or continuous glucose monitor?
Life for those of us living with vision loss and diabetes has changed significantly since our last update in the November 2022 Braille Forum.
Not only do we now have access to current diabetes management technology, but we have choices! We can choose an insulin pump based on factors such as tubing or tubeless, how the pump fits our lifestyle, experience with the company, and the usual whims of our health insurance provider. No longer are we limited to a single device because it has some access to a few features which we can use after struggling with work-arounds.
Smartphones have made the biggest difference in allowing us to take better control of our diabetes, as many current devices are controlled by apps, not inaccessible hardware. Things aren’t perfect yet, but we are able to use continuous glucose monitors and insulin pumps successfully and independently.
Continuous Glucose Monitors
Many blind diabetics are using either the Dexcom or the Libre CGM’s. There is no longer a need to use a receiver. All we need to do is to have the ordinary discussion with our insurance companies, download the appropriate app, slap on a sensor and start getting constant readouts of our blood sugar levels. No more finger sticks! A lot more information! No more making our own documents to share with our doctors because our readings can be automatically downloaded from the app! We still need to gain full access to the graphs, but truly gaining information right now is allowing us to know what is happening in our bodies and make good choices and decisions.
Insulin Pumps
Just in the past two years, a great big double door swung open for us. As of this writing, those who are blind or live with low vision are successfully using at least four different pumps: Mobi from Tandem, Omnipod 5 from Insulet, The Flex system from MiniMed, and Twiist from Sequel Med Tech. All four devices are controlled by smartphone apps. With the Mobi, the Flex system and the Twiist, you will receive an actual pump to which you attach tubing and a cannula that goes into your body and delivers insulin. However, that will likely change soon as most companies seem to be wanting to offer a tubeless option now. The Omnipod stores insulin in a “pod” which you stick on to your body and contains the programming and the cannula for delivering the insulin. There is no tubing or extra device. Training is required to learn how to fill cartridges or pods and to understand all of the various screens on the app. There is a bit of a learning curve for us, as the apps still may contain some unlabeled buttons or may locate features in interesting places. But the most important thing to know is that many of your peers are managing their insulin needs with no assistance from anyone else.
Here are some recommendations if you are curious, eager or desperate:
Get your hands on each pump! You may always request a meeting with an educator or trainer so you can feel the pump and play with the app. It can be challenging if the trainer doesn’t know much about VoiceOver or Talkback, but be the squeaky wheel!
Talk with your peers! Whether it’s through the ACBDA email list or just asking around, please know that we are all willing to help each other and will happily share the good, bad and life-altering experience of living with an insulin pump, supporting you in your journey.
Try out the pumps! All insulin pump companies will let you purchase a pump, try it for 30 days or so, and return it if it doesn’t work for you. There may be some paperwork involved, but it’s a common practice. This gives you time to explore in comfort so you ultimately feel good about your choice. And remember, you can decide not to use a pump for reasons other than accessibility, just as your sighted peers do.
Ask for help! All companies have tech support and trainers who are just a phone call away. Everyone needs help sometimes, and customer service people are gaining more experience with those of us who rely on VoiceOver and Talkback.
Now that continuous glucose monitors (CGM’s) can be paired with our insulin pumps to make insulin dosing more automatic, we are able to live as our sighted peers do, spending less time and effort on making decisions and manually entering necessary information. Yes, we can do this!
Next Steps
One of our main goals is to address the disclaimer found on websites of all of these manufacturers which says that you cannot use their device if you can’t see the screen or hear the alarms. Hello? There are no screens anymore. Phones can be set to vibrate. While many of us have been ignoring these statement for decades, we don’t want anyone to be discouraged from using these fantastic devices because they, their family members, or their healthcare professionals get dissuaded by these warnings.
We are working with manufacturers to be included in focus groups so that our needs are addressed early in the design phase, not after the fact.
We are helping to establish a culture of accessibility at these companies so that one day, there may not be a need for a task force like ours.
We are continuing to strive to collaborate with even more manufacturers as more new products come on the market.
We are continuing to share our stories and show manufacturers, educators, healthcare professionals and others living with diabetes and vision loss just how capable and successful we can be.
Finally, we want to join our peers and live life to the fullest, not just thinking about how in the world we’ll manage our diabetes. Watch for things to continue to get even better!
Thank you to our dedicated task force members:
- Veronica Elsea, Chair
- Tom Tobin
- Patricia Maddix
- Randy Knapp
Mary Davis
Ed Worrell
Miranda McPherson