Managing type 1 diabetes isn’t easy at the best of times. But for Gord McCallum, 68, and his wife Susan, it’s been getting more difficult.

Gord has been living with type 1 diabetes for around 30 years. He and his wife Susan live in Surrey, BC and are retired on a fixed income. Gord used to manage his diabetes by injecting insulin with his meals. He’s now using an insulin pump.

But Gord has been experiencing some cognitive decline over the last few years, which has made his diabetes management more difficult. Before, Gord was entirely self-sufficient. That’s changed. And it’s putting stress on both him and Susan, who now has to be constantly vigilant.

“When I was working,” Gord says. “I could tell you down to the dollar the sales in every department in the store I managed. Now, Susan might ask me if I’ve had my insulin after a meal. I’ll swear I had, but I’ll have forgotten. It’s just so frustrating.”

Gord and Susan wish they could afford a Continuous Glucose Monitor (CGM) that would integrate with an insulin pump. CGM is a device that automatically reads glucose levels via sensors under the skin. While the insulin pump is covered, the CGM isn’t covered by BC PharmaCare or their insurance. So they still use a finger prick device to check his glucose about 6-8 times per day. However, for someone with cognitive issues, that can be a lot to remember. And Gord does forget. Which is why they believe CGM is so necessary.

Susan knows her husband well. She can often tell if his blood glucose is too high, too low, or in-range. “I joke that there are three Gords, and I can tell by which one I’m seeing where his levels are. But, jokes aside, that shouldn’t be how we have to manage his diabetes.”

For Gord, an important part of his retirement, and managing his diabetes, is staying active. “People who don’t know diabetes think you can just remember to take your insulin and it’s fine. But it’s not that simple.” He takes regular walks and plays the drums several times a week – a hobby he’s kept on from his days playing in a band with his childhood friends.

“There are so many factors, like how much sleep you’ve had, if you’ve been active, even the temperature outside can affect glucose levels. And for a person with cognitive issues, it’s just plain overwhelming.”  Gord and Susan both know they can’t always rely on him to keep track of his levels. So even going for a stroll alone could mean trouble.

“If I had CGM, just being able to see my trends would make a huge difference.” Gord says. “It wouldn’t put so much pressure on Susan to remind me to check. And for sure it would help catch the times when we both forget.”  He worries not only about himself, but about how managing his diabetes and his episodes of hypoglycemia (severe low blood glucose) affects Susan, who shares much of the burden.

They also believe that what Gord needs the most is a Hybrid Closed Loop (HCL) or self-adjusting pump. A HCL pump works with a Continuous Glucose Monitor and adjusts background insulin depending on the readings from the monitor. So if Gord’s glucose gets too high or too low, the glucose monitor will detect it and the pump will automatically make the necessary adjustments. Given Gord’s trouble with his memory, they feel it’s almost a necessity.

But they just don’t know if they can fit it into their budget. “We’re on a fixed income. And it’s already not easy. You just feel so helpless knowing there’s a device out there that would take so much fear and anxiety out of our lives – and give Gord so much independence back. If we could afford it.”

For now, they’re making do. Which has sometimes meant incidents of severe hypoglycemia – severe low blood glucose.

“Gord had a bad episode in 2019. He got up in the middle of the night to have something to eat because he knew his levels were very low.”

The dogs started barking and woke Susan, who found Gord semi-conscious. “I shoved tablets in his mouth and luckily he was able to chew and swallow,” she says.  “We later learned he was on the edge of going into a coma.”

The incident opened both their eyes – and was what made them give serious thought to the HCL system.

“If he’d been on the HCL pump, I believe it would have suspended the insulin delivery to prevent the low. The whole incident could have been avoided” Susan reflects. “Since then his anxiety level has been through the roof.”

They aren’t alone. Glucose monitoring devices – the part that automatically measures glucose levels and tells the insulin pump when the patient needs insulin and how much – aren’t routinely covered anywhere in Canada. For people living with diabetes such as Gord, for whom diligent monitoring is challenging, it’s a key component they feel should be made much more accessible

Physician and patient groups such as Diabetes Canada and the JDRF (Juvenile Diabetes Research Foundation) say that Continuous Glucose Monitoring devices are key to helping some people with type 1 diabetes achieve good control and reducing dangerously low blood glucose levels.

CGM is now included in the national standards of care for type 1 diabetes. Provinces continue to explore how to provide coverage, and while some private insurance plans cover continuous glucose monitors, the criteria and coverage levels are very inconsistent.  For people like Gord and Susan, it can mean making tough financial decisions, adding yet another element of stress for both the patient and their loved ones.

Diabetes Canada is campaigning to make CGM affordable and accessible. Learn more or send an email to your provincial representative at https://www.diabetesstrategynow.ca/glucose-monitoring.

This story was created by Content Works, Postmedia’s commercial content division on behalf of Medtronic