The staggering cost of Type 1 diabetes: It's not just about insulin

Public insurance programs paid an average of $967 annually on insulin for people with Type 1 diabetes last year. That’s 33 per cent more than in 2011. But insulin is just a small portion of the staggering costs of managing the condition.

'How much more can we afford?' asks N.S. mother as annual bill tops $10,000

Tammy MacLaren, left, and her daughter Courtney, 12, do not have private insurance and are ineligible for coverage under Nova Scotia's public program. The family must pay more than $1,100 a month out of pocket for insulin and other supplies to help manage Courtney's Type 1 diabetes. (CBC)

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People with Type 1 diabetes in Canada who were nervously watching insulin prices double over just a few years in the U.S. have reason to be concerned about rising insulin costs at home.

Public insurance programs provided by provincial and federal governments paid an average of $967 annually on insulin for people with Type 1 diabetes last year. That's 33 per cent more than in 2011 ($725).

The figures compiled for Second Opinion by a federal drug price watchdog, the Patented Medicine Prices Review Board, refer strictly to people who have public insurance coverage such as seniors and some children, as well as people with low income.

For those who neither benefit from governments' ability to negotiate lower drug prices nor have private supplementary health insurance, paying nearly $1,000 a year on insulin is a bargain.

According to Diabetes Canada, an estimated 300,000 Canadians live with Type 1 diabetes, in which the body produces little or no insulin, resulting in difficulty regulating blood sugar. 

Tammy MacLaren of New Glasgow, N.S., estimates she pays $1,600 out of pocket annually for her 12-year-old daughter Courtney's insulin.

But it's a fraction of all the other costs associated with advances in managing blood sugar levels in people with Type 1 diabetes — which total a staggering $10,000 to $12,000 a year.

Here's MacLaren's estimate of Courtney's monthly costs:

  • $135 — Insulin.
  • $500 — Pods that stick to Courtney's skin and deliver insulin.
  • $180 — Continuous glucose monitor stick-on sensors.
  • $250 — Blood test strips.
  • $24 — Adhesive wipes for pods and sensors.
  • $30 — Lancets.

The real worry for MacLaren is how she'll afford a new insulin pump system when Courtney's current one comes to the end of its life. A new one is expected to set her family back $7,000, though pumps can cost as much as $9,000.

"How much more can we afford to pay?" she asked.

The government of Nova Scotia will reimburse people with diabetes for pumps and supplies, based on their income. Every province has its own criteria for assisting people with expenses. In Ontario for example, Courtney would be covered for a new pump and most supplies.

But the MacLarens earn too much to qualify in Nova Scotia. They no longer have an employer's group insurance that helped buy Courtney's first pump, and private insurance won't cover the costs.

"You're sort of stuck in the middle," MacLaren said.

The family has a lot of company in the middle. MacLaren said fundraisers are common in the New Glasgow area for families who can't afford the financial burden of Type 1 diabetes.

Unlike Type 2 diabetes, there are no known preventative measures or risk factors for the disease — and it can't be managed with healthy foods and exercise alone.

See how the high costs of Type 1 diabetes affect families:

The staggering costs of diabetes on patients' wallets and their well-being

4 years ago
Duration 2:08
According to the Canadian Diabetes Association an estimated 300,000 Canadians live with Type 1 diabetes in which the body produces little or no insulin, resulting in difficulty regulating blood sugar. There is no way to prevent the disease, nor is there a cure. The cost of managing Type 1 diabetes is steep and lasts a lifetime.

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Vik Adhopia is a senior reporter with the Health Unit at CBC News. He joined CBC National Radio News in Toronto in 1995 and then began his coast-to-coast-to-coast journalistic odyssey, reporting from Iqaluit, Prince George, B.C., Vancouver, St. John's, N.L., and finally back to Toronto again.