People With Vision and Hearing Loss Call for Better Access to Diabetes Tech

Many people with hearing and vision loss feel left out of efforts to make diabetes care and technology accessible, diabetes disparity experts said at the recent ADA 2024 conference.

People who are deaf, partially deaf, blind, or have low-vision are frequently excluded from clinical research, found a 2022 study by Health Affairs, for reasons that are unclear and rarely stated. In addition, people in these communities say they need to be involved in the development of diabetes technology so that the devices work for them. 

“We need to include these deaf and hard of hearing and blind and low-vision folks in product development from the beginning,” said Michelle Litchman, medical director of the Intensive Diabetes Education and Support Program at the University of Utah. She explained that people who have vision and/or hearing loss can struggle to use certain diabetes devices because they have not been designed with modifications to enable use.

“We are excluding folks in these communities from clinical trials to the point where we do not know and are not able to prescribe certain key leading diabetes treatments. All this diabetes tech – folks are left out,” she said.

Litchman also highlighted the need for accessible communication, such as clinically trained interpreters in person or via telehealth who can help explain the nuances of a diagnosis or treatment for people with hearing loss. 

Communication challenges

When Ryan Layton, who is deaf and has prediabetes, was diagnosed there were no peer support groups, limited resources to help him learn how to manage his care, and few videos on diabetes that included American Sign Language (ASL) for him to follow.

Today, Layton is the chief financial officer at Access Simplified, which works with organizations to make their messaging accessible and equivalent for people who are deaf or hard of hearing, with greater accuracy than live transcription. 

The most common challenge, in Layton’s experience, is communicating with a doctor. This is in part because while many people who are deaf or hard of hearing know ASL, a large number struggle to understand English, so even captions can be difficult to follow – especially around medical advice.

“When the doctor told me I had prediabetes, I was like OK, what's next?” Layton said. "They gave me all these videos with captions, but I was doubting my understanding. We need that information in ASL.”

Litchman pointed out that her review of YouTube found no videos produced by professional diabetes organizations in the United States, and only 20 videos on diabetes produced by a hearing nurse with an ASL interpreter. The review also found much of the information quality was questionable, and a number were created by students learning the language. 

Other challenges for the community include requesting interpreters and finding understandable patient education, websites, and manuals to help with their diabetes care. 

Hard to see, hard to use

Lack of communication and access to technology is also a serious issue for people who are blind or have vision loss, said Allyson Hughes, an assistant professor at Ohio University's medical school. 

Not being able to get the proper care needed could lead to delayed diagnosis, poor mental health outcomes, and difficulties with things that might help in diabetes self-management like getting exercise. Hughes, who has type 1 diabetes and retinopathy, shared some of her own experiences with health disparities – in particular, accessing diabetes technology.

“Just like the deaf and hard of hearing community, these folks are truly not invited to the table as far as health equity and health care goes,” Hughes said. 

She spoke about how her insulin pump is difficult for her to operate because it doesn’t have buttons that would assist people with vision loss. 

“There's no tactile feeling,” she explained. She pointed out that once the power button has been turned on, the touchscreen-only commands are not possible to operate for people who are blind of have low vision. 

“It's very difficult to understand how much insulin you're getting or how to put it into exercise mode or sleep mode, all these things. As far as health disparities, we have a very long way to go in this field,” she said.

Hughes was ushered into a career studying such health disparities in part by an experience trying to explain how to use a glucagon emergency injection kit for severe hypoglycemia to her former roommate (now her research collaborator). The small font size and long directions at the time made it difficult to understand, which could be a serious issue with getting medicine she might need urgently. Hughes is now part of a diabetes task force that meets with pump and continuous glucose monitoring (CGM) manufacturers to advocate for better accessibility to technology.

At her ADA conference session, Hughes quoted a participant from one of her research studies: “Blindness is more than one person should ever have to deal with. And now I don't get to eat what I love. Some days, I don't know whether it's harder to be blind or diabetic. Put them together and it's a living nightmare. No one gets it until they're in it.”

Chelcie Rice, who has vision loss and type 1 diabetes, discussed how his delayed retinopathy diagnosis, a common issue in the low-vision and blind community, resulted from a lack of insurance coverage. When he got a new job a year later, he was able to receive treatment for retinopathy, but by the time his vision returned, he had suffered a retinal detachment and lost vision in his right eye.

Rice decided to use his experience to raise awareness of issues related to the difficulty of living with vision loss and diabetes. 

“I would ask anyone that's in diabetes technology: Help us navigate these devices,” he said. “If I have the ability to view it on my phone, can I make it bold or brighter? Can I change the font color? And help people who don't have access to make it more readily available to them."

Accessible technology can help

For those who are deaf or hard of hearing, technologies such as speech-to-text can help, Litchtman said, as well as video of remote interpreters. She added that insulin pumps and CGMs need to have visual and vibration alarms.

Accessible alternatives like these could be tested during the development process with people who are hard of hearing or have low vision to find out, for example, if vibration is strong enough to catch someone's attention when blood sugar drops or a pump is running out of insulin.

Layton is part of a community advisory board that tested the SugarPixel, a wifi-enabled monitor with a large display to show blood glucose levels and their trend arrows. The group gave the device high marks because it was much larger than the display on a typical handheld device or app. The group also appreciated the vibration strength of an accessory called “a puck” used for low or high blood sugar alerts that can be placed under a pillow.

The advisory board recommended that the manufacturer create a port that would allow people to add lights, stronger vibrations, or a fan for alerts.

Rice, who is a stand-up comedian, jokes about having an “old man moment” to make a point about diabetes technology – like his insulin pump, for example – not being designed for people with visual impairment.

“We can put a man on the moon. Why can't we increase the font size?”

Learn more about accessibility and diabetes care here:

• How To Avoid Hearing Loss With Diabetes
• Like Father, Like Daughter: Eye Health From a Family With Type 1
• 7 Strategies for Self-Advocacy in Diabetes Care

Photo credit (top): SugarPixel courtesy of CustomTypeOne.com; (above) American Diabetes Association