Nova Scotia's insulin pump program should cover adults, advocates say

There was a time when Debbie McAuley was constantly rushed to the hospital with either low or high blood sugar.

"The ambulance drivers pretty much knew my name," she said.

McAuley, 41, has Type 1 diabetes. She lives in Western Shore, N.S., and over the years, she struggled to manage her condition.

She was repeatedly hospitalized for a severe complication called diabetic ketoacidosis. "My body was damaged quite a bit."

She said all of that changed in her late 20s, when her husband's medical plan covered the cost of an insulin pump.

The pump is a small computer that delivers insulin slowly through the day, as well as additional doses when the user needs them. Those who have pumps typically have steadier blood sugars.

That was the case for McAuley. "Going from seven needles a day to one every three days was amazing."

Now, McAuley has maxed out her coverage. Her current pump is six years old, and she knows that sometime soon, she'll face an $8,000 bill to replace it.

McAuley is one of a number of people calling for an overhaul of Nova Scotia's Insulin Pump Program. Her message is echoed by an IWK specialist, Diabetes Canada and Nova Scotia's New Democrat Party.

The program currently provides pumps and supplies for people with diabetes who are 25 and under, who meet the means criteria, which factors in income and the size of a family.

Across Canada, six provinces and territories have eliminated the age cap. Diabetes Canada refers to that criteria as age discrimination. It's advocating that the remaining provinces — including all four in the Atlantic region — scrap age limits.

Dr. Beth Cummings, a pediatric endocrinologist who specializes in diabetes at the IWK hospital, helps children and families adjust to their diagnosis. She said pumps are an excellent method of tracking blood sugars and lead to better health outcomes. 

"People over 25 are kind of stuck. They don't have any extra support, particularly if they don't have their own health insurance. In that age group, it's a real issue."

She would like to see the end of the age limit and coverage for continuous glucose monitors.

"The technology is changing rapidly and we're a little bit behind on what's covered compared to other countries such as in Europe and even in the U.S."

Cummings said there was some discussion in the past with the provincial program about changing the qualifications, but those discussions were set aside during the pandemic.

She said she worries about retirees who lose their private drug coverage and suddenly have to relearn how to manage their diabetes using finger pricks and injections.

"I don't think that that's what we want. Because pumps make such a difference in people's lifestyle and quality of life."

No plans for changes

A statement from the Department of Health and Wellness points out that the program was expanded in 2015, when the age limit changed from 19 to 25.

"While there are no plans to expand the program further at this time, the department regularly reviews its programs to ensure they are meeting the needs of Nova Scotians, and welcomes feedback on the insulin pump program," the statement said.

The province's NDP argues there's room to expand the program now. The NDP filed a freedom of information request which revealed government spending on the program was $5.3 million when it began in 2013, but has since dropped to about $815,000 a year.

"If there was a certain amount of money that was allocated before and it's not being used, why not — instead of cutting the money — keep the same amount of money and expand the access?" asked Susan Leblanc, the NDP health care critic.

Leblanc said she's heard from a number of families who are struggling to cover costs and that even those who qualify sometimes only get partial coverage. 

"They still are paying out of pocket thousands of dollars for these devices," she said. "I've heard of personal fundraising, bake sales, tickets, that kind of thing. People should not have to fundraise for their healthcare."

McAuley, meanwhile, is facing her own financial issues. She's on disability because of her condition. Coming up with $8,000 to cover a new pump is impossible, she said.

She said she questioned her husband's healthcare provider about being cut off and was told a pump is a luxury.

"To me a luxury would be like a new car, not something that's attached to your body that can help your health."

McAuley said one insulin pump company will allow her to choose a payment plan over several years. "But then you're up for a new one, so you're constantly in their debt."

She said going back to injections and finger pricks is not an option. "I don't want to go down that road again."

She's hoping more Nova Scotians will speak out about the burden of their costs and push the province to make changes.

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