Today, we’re excited to feature an interview with Tom Ley, who has a unique story in that he’s not only been living with type 1 diabetes for most of his life but has also been blind for much of his life too. Despite his inability to see, Tom’s visionary thinking on D-innovation has the potential to impact many in the Diabetes Community. Not only is Tom a PWD himself, but he also has a young son who was diagnosed at age 4.
Both he and his wife Eileen are big advocates for the visually-impaired in the Diabetes Community, and while both entered our Patient Voices Contest this year, Tom was chosen as one of our 10 winners for 2012. His winning contest video was titled “Access Denied,” illustrating how PWDs with vision impairments aren’t offered the same access to tools like insulin pumps and continuous glucose monitors (CGMs) as everyone else. To Tom, these 21st century D-devices should be offering the same availability to the blind as ATMs and blood pressure meters. A catchy line in his video that we can’t get out of our minds: “Do diabetes technology companies have a blind spot?”
Great point, Tom. Now we’re wondering that ourselves…
Before we get to the DiabetesMine Innovation Summit in November where we can ask vendors that question directly, Tom takes a few minutes to share his story and what’s led him to this point in his life:
DM) Tom, can you start by sharing your unique diagnosis story?
TL) Actually, my diabetes story consists of one diagnosis after another. I developed diabetes when I was 7, lost my vision from diabetic retinopathy during my senior year of high school, experienced both kidney failure and a successful kidney transplant while in college, and developed mild gastroparesis in my mid-twenties. Thankfully my heart, hands and feet are great!
What was it like being diagnosed so young?
I think my T1D diagnosis story is typical. I first learned that I had diabetes in July 1974. During that spring, my second grade teacher complained to my parents that I was leaving class frequently to go to the bathroom. The first time I recall realizing something was wrong was during a family day trip to Toledo Bend. I was incredibly thirsty. I can remember gulping down large glasses of lemonade and still being thirsty. I had to ask my dad to stop the car several times so I could go to the bathroom. Of course, it was summertime in Shreveport, LA, so no one was surprised or concerned about my thirst. But my parents noticed my dramatic weight loss. They could literally see my ribs. Finally, I was so weak, tired and nauseous that I could hardly move, so my parents took me to the emergency room. By then I was in ketoacidosis; my blood sugar was 550 mg/dL.
Back then, diabetes management was rather minimal. My pediatrician’s goal was that I never experience hypoglycemia. I would go to the pediatrician twice a year for glucose testing and insulin adjustment, and I monitored my urine daily for sugar. I never experienced a low blood sugar as a child.
You mentioned in your video that you are completely blind and that your wife has ‘low vision.” Can you tell us more about how your blindness affects your life with diabetes?
Blindness doesn’t really change the tasks one does. Rather, it changes how one goes about accomplishing them. I have a wonderful family life and professional career because I got the training I needed to succeed as a blind person. Shortly after losing my sight, I received world-class blindness rehabilitation from the Louisiana Center for the Blind. There I developed the inner confidence and practical skills of blindness, skills like Braille literacy and independent cane travel. These allow me to live a full and productive life. I have a challenging and rewarding career as a business analyst at UPS. I am married and have two children. I met my wife Eileen at the National Federation of the Blind annual convention. She was born blind but has low vision. Together, we work on diabetes and disability rights advocacy and consult on the development of the only completely accessible and affordable glucose meter for the blind — the Prodigy Voice.
In my video, I explain some of the challenges blind diabetics face. In terms of diabetes self-management, the biggest obstacle I have is insufficient access to information. For example, consider food labels. When I need to calculate carbs, I either have to have someone read a food label to me, or I need to check an online resource using assistive technology like an accessible computer, or my voice-over enabled iPhone.
(Editor’s Note: Eileen also submitted a great video for the Patient Voices Contest, but alas we could only chose one from the family!)
Besides the Prodigy, are there other good diabetes tools designed for the blind?
Most diabetes technology is not particularly accessible to blind users. Sometimes I can access a limited set of features non-visually. But, so far, the Prodigy is the only meter I can use. For dosing insulin, there are a number of accessible methods for those not using a pump. Insulin pens are accessible and there are gadgets that allow blind people to fill insulin syringes from a vial.
Consider my insulin pump. I can’t use the meter remote for my pump because it is not accessible. I have learned to change my pump set independently: I can prime the pump, use the audio bolus features, and I can even suspend my pump. But, I need a sighted person to change my basal rates, set a temporary basal, use the built-in bolus calculator, determine IOB (insulin on board), check the battery status, read error messages, figure out how much insulin remains in the cartridge, or take anything other than a simple bolus without sighted assistance. Basically, the advanced features that make pumps so wonderful are not accessible to me.
The same goes for my CGM. I can insert and start the sensor. I can hear the alarms so I can take action when I rise above or sink below targeted ranges. However, I cannot independently enter the twice daily calibration BG readings. Nor can I access my current CGM BG reading or determine if my numbers are rising or falling. Nor can I enter events into the CGM (ate 25g, exercised, etc.) or access any of the trend graphs without sighted assistance.
There have been some exciting new advancements in diabetes technology overall, like the iBGStar, which you received. What did you think of the iBGStar?
I think the iBGStar is a brilliant innovation. I gave mine to my 11-year old son, Jon Carlos, who developed diabetes when he was 4 years old. (Like other parents with diabetes I watched for diabetes symptoms like a hawk, so we caught his diabetes fairly quickly.) He loves the meter because of the coolness factor. He also likes the app for logging his numbers.
How accessible is the iBGStar for you?
So far the iBGStar is not particularly accessible to blind users, but it has great potential. Obviously, I cannot use the iBGStar at all as a standalone device. I did however test the iBGStar for several days in conjunction with my CGM. The iPhone has built-in accessibility features such as VoiceOver, so with enough persistence, I was able to test my BG with the meter when it was attached to the phone. I was also able to enter some data into the meter when it was connected to my iPhone, but the meter was rather tedious to use as a blind person. The interface for the iBGStar iPhone app leaves much to be desired in terms of usability for someone using the iPhone’s accessibility features. However, these are likely software barriers that an accessibility consultant could help the company effectively address quite quickly and cost-effectively.
What kind of diabetes device would help you the most as someone with vision loss?
Like most every other diabetic, I am looking forward to using the artificial pancreas currently under development. As a blind diabetic, I long for equal access to the same state of the art technologies sighted diabetics are using and will use in the future. In my mind, separate is not equal. The only cost-effective way to create access for everyone is to build it into the products as they are developed. This principal is called ‘universal design.’ One great example of universal design is the iPhone. Every single iPhone comes with built-in accessibility features that can be activated right out of the box. Now any iPhone user can activate accessibility features whenever they encounter a temporary or permanent visual disability. This should be the case for all diabetes technology too.
Accessible diabetes technology is sorely needed. The sad truth is that diabetes is still a leading cause of blindness, and as the incidence of diabetes soars, so does the incidence of diabetes-related vision loss. Moreover as the population ages, the incidence of vision loss from other conditions also grows. It is clear the world needs diabetes technologies that everyone can use!
What are you most excited about going in to the DiabetesMine Innovation Summit?
It seems as though the feedback from PWDs is very important to the Summit attendees from industry and government. And, it also appears as though there may be people in attendance with the power to influence decisions. If this is true, then I’m excited to be able to tell our story with the hope that positive change will happen. Blind diabetes advocates have shared our stories for decades to industry representatives in sales and marketing at national diabetes events, but although the reps listen, nothing has ever changed. The chance to talk directly to decision-makers is truly exciting.
What would you most like to see the Summit achieve?
I have now been blind from diabetes for around 30 years. During all this time, I, and thousands of other blind and low-vision diabetics have never had access to the diabetes innovations available to other diabetics. For decades we have been advocating for equal access to diabetes treatments. Our hope is that my participation will help persuade decision-makers to commit to ensuring equal access to care for all blind diabetics. This means that we would have access to the same technological advancements everyone else gets to use at the same time. We are tired of feeling like second class citizens.
We couldn’t agree more, Tom! Thank you for sharing your story and all that you do.
UPDATE: We were sorry to hear in August 2017 that Tom passed away, after battling cancer for more than a year.