Emily Gouthro says she’s fortunate to have health insurance. If not, she would struggle to manage her diabetes.
“Even if you do have coverage in Nova Scotia, sometimes it’s only 80 per cent of the pay,” said Gouthro in a recent interview. “And that’s if you have great coverage.”
Gouthro, a registered nurse, was diagnosed with Type 1 diabetes when she was four years old. The cost of her insulin is entirely covered by her insurance plan. But, as she explains, costs go well beyond the insulin itself.
People with Type 1 diabetes often rely on insulin pumps — which can cost thousands of dollars — to administer their medication. Then there’s the cost of reservoirs for insulin, infusion sets, testing strips and other equipment.
“A lot of people don’t realize that there’s so much to this disease,” said Gouthro. “It’s 24 hours a day – you’re thinking about it all the time.”
Goutro said under her insurance plan, she gets $10,000 to cover insulin pumps for her lifetime.
“But if you know anything about insulin pumps, they typically range anywhere from $4,000 to $6,000. That’s just for the pump itself, and the warranty’s only good for four years,” she said.
“They’re saying you only get $10,000 for your lifetime, but the insulin pump you’re only going to have for a couple of years. And then what are you supposed to do?”
As for the rest of her supplies, she has to pay hundreds of dollars out of pocket each month and wait to be reimbursed by her insurance.
“You’re always going to have something on your credit card or waiting to get paid back,” she said.
“Even if you do have coverage, and you’re lucky to have coverage, you’re still out money and you’re still waiting to get that back.”
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When she was a child, her family had to fundraise to purchase her first insulin pump. Nova Scotia now has an insulin pump program, but that only covers pumps for people aged 25 and under.
“The coverage here is so behind and so lacking. It’s great that there’s coverage for up to 25, but your disease doesn’t go away after 25,” she said.
“It’s almost discriminatory that after 25, then you’re not getting the help, you’re not going to be able to have your pump covered, you’re not going to get the basic supplies that you need.”
Gouthro said if diabetes isn’t managed properly, that can lead to many more serious problems down the road, putting further strain on the health-care system — something she has seen in her work as a nurse.
“If you’re kind of going along, having the bare-minimum supplies, the bare-minimum treatment, then you get there and you can have kidney failure, you can deal with blindness, you have amputations. It’s all the scary things that you hear about,” she said.
“If our province could help give people the tools to have the best possible chance with their disease, it would be phenomenal. It would give everyone a better chance.”
She said she is hopeful that the Tim Houston government — which has focused much of its mandate on health care — will make changes so people with diabetes can afford their supplies.
Diabetes Canada agrees that some other jurisdictions are doing it better. According to their website, B.C., Alberta, Ontario, Yukon, Northwest Territories and Nunavut all cover insulin pumps and supplies for eligible people of all ages.
Nova Scotia, New Brunswick, P.E.I. and Saskatchewan cap the insulin pump coverage at age 25, while Manitoba, Quebec and Newfoundland and Labrador cap it at 17.
However, in Manitoba, full coverage is given to those recommended by an endocrinologist, and Newfoundland and Labrador says it will cover people up to 24 who are already in the program and meet the criteria. New applicants over the age of 18 who meet the criteria will be income tested.
Coverage for insulin pumps is inconsistent across the country, Diabetes Canada notes.
“Canadians living in provinces with limited coverage or not meeting eligibility criteria for their provincial plan must pay out-of-pocket for insulin pump therapy, which carries a $6,000 to $7,000 price tag,” the Diabetes Canada website says.
“In addition, the ongoing expense of monthly supplies is a constraint to the use of insulin pumps, costing up to $300 every month. For many people, these charges are prohibitive.”
Brooks Roche, the manager of patient knowledge and connection with Diabetes Canada, has lived with Type 1 diabetes for most of his life. He described it as a “relentless” disease that calls for constant self-management.
“Every single input — whether that’s food, sleep, exercise, stress, sickness, weather — everything comes into play,” he said in an interview from Charlottetown, P.E.I.
“Basically, we’re always hunting for some sense of normalcy, and there are no breaks and no days off.”
Roche said people with Type 1 diabetes who use insulin pumps can expect to pay $6,000 per year for their supplies, while those with other types of diabetes pay around $2,000 a year on average.
He said the high price of diabetes is an especially big problem in the four Atlantic provinces, which are the bottom four in the country in terms of median household income.
“These out-of-pocket costs do not know what province or territory they’re in, so they eat up a much more significant chunk of people’s income in Atlantic Canada,” he said.
“It really does add up when folks have to make those horrifying decisions we hear about, where it’s: ‘Do I pay for all the groceries I need, or that my family needs this month? Or do I get this technology or treatment that I need to stay in a good quality of life?’
“Those are not choices that we want people to be making in a country with purportedly universal health care.”
He said the logic behind putting age caps on insulin pump coverage “falls apart really quickly,” as people of any age can be diagnosed with diabetes.
While Roche is encouraged by the federal government’s commitment in the last budget to fund a national diabetes framework, he said more work must be done on a provincial level to ensure people with diabetes have access to the equipment they need.
Noting that Sunday marks World Diabetes Day — and this year marks a significant anniversary of the discovery of insulin — Roche said now is the time for provinces to step up.
“It’s very important to take that momentum and roll it into provincial decisions that are being made,” he said. “This is the opportune time, because 2021 is the 100-year anniversary of the discovery of insulin … and we ought to celebrate that.”
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In a statement, Marla MacInnis, spokesperson for the Nova Scotia Department of Health, said in an email that eligibility for the provincial insulin pump program is “based on meeting medical criteria and a determination of financial support based on family income and size.”
“The age associated with this program was based on an evaluation of the needs of Nova Scotians together with a jurisdictional scan at the time the program was implemented,” she wrote. “The Department regularly reviews its programs to ensure they are meeting the needs of Nova Scotians and welcomes feedback on the Insulin Pump Program.”
Meanwhile, New Brunswick Health Minister Dorothy Shephard told Global News last week that insulin pump coverage is an important discussion to have, but one that’s been delayed due to COVID-19.
“It’s always been my intention that we have this type of conversation … but it’s just the department has had so many fires to deal with that this conversation has been delayed,” she said.
The cost of not managing diabetes
Dr. Tom Ransom, a Nova Scotia endocrinologist with Capital Health, said there have been many advancements in the last century when it comes to managing diabetes and administering insulin, and there is now a “menu” of supplies that help people with diabetes manage their disease.
However, the cost of these supplies remains a barrier — especially for those who are uninsured, or whose insurance is lacking.
“People who are employed and have private drug plans will have these things covered. But unfortunately for the working poor — the people who are maybe self-employed or don’t have the best drug plan, or when they got work had pre-existing diabetes so it wasn’t covered — for these people, they’re in a real bind,” he said.
“Sort of sacrificing ideal care at a cost and putting themselves at risk.”
Ransom said the question is less about the cost of managing diabetes and more about the cost of not managing diabetes.
“If you’re not managing it, you incur the costs later,” he said. “You increase the risk of eye disease, which ultimately can lead to blindness, or kidney disease, which can lead to dialysis. Or neuropathy — people could potentially lose their foot — and heart disease, heart attacks and things like that, that are at a great cost.”
Ransom said he and others have been lobbying the government for “quite some time” to get insulin pumps and other equipment covered, but said things have been delayed due to the COVID-19 pandemic.
However, he remains hopeful that the province will begin covering these important supplies.
“I talk to people all day who have diabetes, and I advocate for them every chance I get,” he said.
“For me, it just makes sense to have these things covered.”
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