by Veronica Elsea
From the Editor: What does it mean to say that a particular piece of equipment is accessible, and does what that equipment is used for change the standard? The reader will notice in this article how resourceful Veronica must be in counting beeps and in pressing a button in the hope that she will be placed on the desired screen. It is one thing to say that an oven is accessible if a person can adjust its temperature in five-degree increments by counting beeps. If the oven starts at 325, setting the temperature to 450 is certainly doable. If one is off by a single press, either through difficulty in counting or a button press that doesn’t register or beep, the chances are that the food will still be edible. But if miscounting beeps or not getting a confirmatory tone changes how much medication one gives, the consequences may be very different.
Veronica Elsea is a music business owner living in Santa Cruz, California. She has produced several albums to date including "Diabetes Melodious," using her music to help others live with the day-to-day challenges of diabetes. Blind since infancy, she was diagnosed with Type 1 Diabetes in her thirties. After three years of less-than-ideal control using regular and NPH insulins, she began using an insulin pump in 1991 and continues to rely on the pump's benefits today. Since being diagnosed she has taken advantage of living close to many of the companies that manufacture diabetes management equipment, sitting down with engineers and educating them on how their equipment could be made accessible to those who are blind and visually impaired. In the early nineties she worked intensively to help persuade medical professionals that people who are blind can successfully manage insulin pumps without constant assistance from a sighted person. Over the past twenty-five years, she has offered support and encouragement to others who are blind who wish to know more about using an insulin pump through the Diabetes Action Network and personal contacts.
Today she continues to find contacts among diabetes equipment manufacturers, medical professionals, politicians, and people living with diabetes in order to educate, engineer, and advocate for improvements in equipment which would allow those who are blind and visually impaired to make use of modern equipment in gaining or maintaining optimum diabetes control. Here is what she has to say:
I have been attached to an insulin pump since September of 1991. My first pump was the H-Tron V100 from Disetronic. For the past ten years I have been using the Deltec Cozmo from Smiths Medical. Neither of these pumps are currently available. Disetronic has been purchased by Roche, and Smiths Medical is no longer in the diabetes business. Since my current pump is long out of warranty, I am quite concerned about what I'll do when it stops working.
On Saturday, March 7, 2015, I attended the day-long seminar organized by Taking Control of Your Diabetes. In lieu of attending some of the workshops, I spent most of my time in the exhibit hall visiting with all of the insulin pump manufacturers who chose to attend. I was able to spend some quality time with all of the pumps, gaining hands-on experience with each. I tried out the Medtronic MiniMed 530G, The Animas Vibe, Animas Ping, Asante Snap pump, Insulet Corporation's OmniPod, Tandem Diabetes t:slim, and the Roche Accu-Chek Spirit.
In the early nineties pumps were designed with convenience and easy access through clothing in mind. Hence, they had large, easy-to-find buttons, simply designed functions, beeps to guide the user through all processes, and only a few different functions available. With today's smart pumps, the devices take on more of the work such as figuring out carb counts, more alarms, connecting with meters and continuous glucose monitors, offering more programming options for the users. This increase in functionality has led to an increased reliance on complex menuing or "wizards" which bring up varying screens depending on the user's responses to questions. Since users are now expected to be looking at the pump screen or that of a connected meter, the easily found buttons are disappearing, and the manufacturers no longer see any need for keypad beeps, so those have all been removed.
These changes pose a considerable challenge for those of us who are blind or visually impaired because we have lost significant access to information and functions provided by the pump. As a totally blind pump user, I will begin my review by explaining what I can and cannot do with the Cozmo 1800, which I am still using.
Things I can do very easily on the Cozmo pump:
Things I can do very carefully or with a bit of verification by a sighted person:
Things requiring initial assistance that helped:
Things I can do easily on the computer with CoZmanager software:
For me one of the most important benefits of using an insulin pump is taking advantage of the "insulin on board" feature, especially when correcting for high blood glucose readings. Here's a description of how I do this on the Cozmo:
I've programmed a target BG level into my pump at 100. Let's say I do a finger stick, and my reading is 180. In the Cozmo I'd do the following: hit the next button once to wake up the pump and hit it again to get into the menus. Hit down-arrow once for the correction bolus screen and press next to select it. The screen shows 100, and I must hit the up-arrow until I reach 180. So I'm listening for the keypad beeps as I count to 80.
Then I hit next to continue. At this point the screen displays either how much insulin I need or how much is being subtracted if I still have insulin remaining in my system from a previous bolus. I can't read this display, but if I hit the up-arrow and hear no beep, it means that the pump doesn't think I need any more insulin. I hit "next" again, and here I can override the pump if I choose by hitting the up-arrow till I've added the amount I want. I then hit next again to finish. This feature would not be available to me at all without the keypad beeps as feedback during the process.
On the Cozmo being able to separate the correction bolus from the meal bolus means less opportunity to forget which screen I'm on. No pump currently on the market comes with software which allows the user to program the pump from the computer using a screen reader.
Some studies were begun to develop speech output for this pump. Unfortunately Asante has gone out of business as of May 15, 2015, and this pump is no longer available. Customers are being referred to Animas.
This pump comes with an integrated continuous glucose monitor and connects through Bluetooth to the Bayer Contour meter. During my demo it was difficult to get the representative to discuss any method of doing anything that didn't involve making use of the remote features.
Unfortunately the rep was so intent on telling me what was wrong with all of the other pumps that it was difficult to get some questions answered. The rep could not seem to grasp that simply using the accompanying meter and sending a blood glucose reading to the pump was not acceptable because we still need to know what our readings are.
The Animas Vibe includes the Dexcom G4 continuous glucose monitor while the Ping includes a meter which serves as a remote. The meter is not accessible although those who can work with a high-contrast device may find the Animas to be a satisfactory choice.
This pump has no tubing. Insulin is stored in the "pod," and communication occurs with a remote. Because insulin is stored in the pod, not in the main pump, this pump is not currently covered by Medicare.
The remote contains a FreeStyle meter which is not accessible. Both the pods and the remote have gotten smaller since this pump first came on the market.
This is a touchscreen pump. Unfortunately the icons on the screen do not land in the same area for each page so a usable template could not be created to aid in locating items.
The pump can be controlled on the unit itself or via a remote.
The unit itself is not accessible when setting alarm ranges. High and low alarms do sound different, but alarms such as problems with transmitter or receiver do not stand out. BG readings appear on the display every five minutes along with a graph which shows how rapidly the user's BG level is rising or falling.
On the unit itself, I could silence an alarm even though I couldn't identify the cause of some of them. Calibration required concentration but was possible. Dexcom SHARE™ no longer requires the user to purchase a separate receiver. The SHARE app for iDevices and Android allows the Dexcom display to be seen on the device containing the app. Screenreaders may read the most recent number, but there is no representation of the graphs. The Apple Watch is simply considered another external device and does not behave any differently from an iPhone or iPad.
I found the CGM felt like a lot of work for someone who does not have hypoglycemia unawareness.
In conclusion, I have no idea which pump I'd purchase if my Cozmo reached the end of its life today. I hope that as long as some pumps and other medical devices still rely on buttons for their operation, companies can be convinced to return keypad beeps as an option for all users. I certainly hope that the current fascination with touchscreen devices does not preclude those who are blind from obtaining the same standard of care afforded to those who are sighted. But for now, a serious gap remains.