DIABETIC CHALLENGE
Better insulin pumps
It was one thing to have to go through his childhood and youth dealing with diabetes while maintaining an active lifestyle that included playing hockey and landing a baseball scholarship to a university in Michigan.
But when Ryan Hooey of Tecumseh lost his eyesight “overnight” due to the disease at the age of 27, the challenges took on a completely different direction.
“I don't want to say it was shocking, it was just another thing where I had to make adjustments,” he said on Saturday, which also marked World Diabetes Day.
Technology improvements over the years have certainly helped Hooey, now 34, deal with diabetes. But there is still a long way to go in terms of improvements — especially for those who have vision struggles due to the disease, he said.
Hooey, now employed as a program leader for the Canadian National Institute for the Blind, has been lobbying of late for vast improvements to insulin pumps. He currently uses a model produced by Medtronic, but all brands need to be altered as none presently account for diabetics who struggle with vision loss.
Diabetes is the fourth-leading cause of vision loss in Canada, he said.
“Several things can be done,” Hooey said. “I can't see the screen, so I have no access (to information). Many of the features I'd like to use, I can't — such as a carb counting ratio. I can't even set the time or change it because of daylight-saving time. Simple tasks like that others can do, but I can't.
“There are warnings, but the beeps are all the same. It could be a low battery, my temperature could be off, but it's just a guessing game for me at this point.”
IV tubing on the pump must be changed every three days, but that is not something he can do on his own, he said. He needs someone to help or at the very least guide him through Facetime.
Hooey estimates he can only use about 11 per cent of the features available through insulin pumps due to his lack of vision.
“Imagine getting a new iphone and you can only use 11 per cent of what it can actually do,” he said.
He and others struggling with many of the same issues participated in a recent online town hall hosted by CNIB where aside from struggling to secure insulin pump improvements for those with vision issues, there is also concern about unequal insulin pump affordability across Canada.
Some provinces such as Ontario cover the cost of pumps, while other places, such as Manitoba, diabetics must pay out-of-pocket with costs that can reach up to $15,000, he said.
Standards and protocols need to be Canada-wide — and not decided by each provincial government, Hooey said.
“A voice (included on pumps) would be great — or at least change the beeps where one beep means one thing and four beeps something else,” he said. “Change the sound of each beep with high-pitch or low-pitch because right now they are all the same.”
Hooey said he is among a group that has contacted insulin pump manufacturers in writing about their concerns, but still waiting for feedback.
“We have sent it out to all the pump companies,” he said. “It's a waiting game so far.
“I would just like to get my foot in the door and get them to see what it is like for me to use a pump on a day-to-day basis. It would be nice if it was just as easy for me as someone without vision problems to use a pump.”