COLIN O’CONNOR/TORONTO STAR

Evelyn Instenberg, who requires four injections daily, is looking into an insulin pump. Instenberg, the leader of the Canadian Diabetes Association's North York chapter, lobbied for government funding for the device.

Balancing diabetes, work proves costly

Eleven years ago, while visiting her parents in Windsor during a lull in her otherwise hectic life as an IT professional, Evelyn Instenberg was shocked to learn she had developed Type 1 diabetes.

She was so busy working on the several contracts she had with General Motors while also thinking about starting her own information-technology business that there seemed little time was left to deal with this new complication.

"I'm a very A-type personality, you know, go, go, go, go, go," Instenberg says.

At the age of 40, she became part of an unfortunate demographic: the 10 per cent of Canadians living with diabetes who are insulin-dependent. That means Instenberg, 51, requires daily injections of synthetic insulin to regulate her blood-sugar levels and to stay healthy.

"Although there's tons of people with diabetes, I felt so alone then," she recalls.

Through at least four needle injections a day, Instenberg does her best to control her blood-sugar levels and avoid more serious health complications, using fast-acting insulin before meals and long-acting basal insulin overnight. She exercises regularly, making sure there's time each week for a few hours in the swimming pool, as another way to keep her diabetes in check. She also started and now runs the Canadian Diabetes Association's North York chapter.

Still, Instenberg says she struggles to stay on top of her diabetes. She says she's troubled that her morning blood-sugar levels "are all over the place," attributing it in part to working "late hours and crazy hours and skipping meals."

Sometimes life gets so busy that she forgets to carry her insulin cartridges and her pen needles when she leaves home.

"I have so much in my life, but I always have to make sure I have my insulin. It's an extra thing in life that I always have to deal with."

A decision by the Ontario government earlier this year to provide adults with insulin pumps under provincial health insurance could help Instenberg better manage her life with diabetes. She's researching the possibility of switching from multiple daily injections to using a pump that would give her a constant, steady supply of insulin and require only one injection, with the use of an infusion set, every three days.

Insulin pumps can help users achieve continuous subcutaneous insulin infusion, a process of insulin delivery that more closely mimics the insulin secretion function of the human pancreas than injections by hypodermic needle before meals and bedtime. The pump holds a reservoir of synthetic insulin that is connected to the body via surgical tubing and a replaceable infusion set.

The prospect of being able to get a pump is cause for optimism, says Instenberg, who believes her career would likely have been far less complicated had the province provided coverage for insulin pumps sooner.

Several years ago, while working as an independent IT professional at GM's Oshawa plant, she says she contemplated hiring staff and expanding her operations. However, she found that her diabetes – and particularly the cost of managing it – held her back.

"I think to myself, `If I didn't have the diabetes what kind of decision would I make?'" she says. "That's always something that runs through my head."

She found the start-up costs of running a business daunting, especially when factoring in her health circumstances. "I couldn't get medical insurance as a diabetic. They said they could give me eye care, dental, whatever, but they couldn't give me basic medical care. I couldn't believe the hassle I was getting because I was diabetic," she says.

An insulin pump, with an average upfront cost of $6,500 for the device itself plus about $250 a month for related consumables (such as infusion sets that must be replaced every three days), was out of her reach. Paying for insulin, needles and related material, including a glucometer and blood-test strips, at about a dollar apiece, as well as drugs to lower cholesterol levels and avoid the risk of heart disease, was already stretching her budget.

"I was on my own. I had to figure something out or work something out with the medical suppliers . . . I just paid for everything on my own."

As president of the CDA's North York chapter, Instenberg knew she wasn't alone and that many other Ontarians were facing high costs in their personal finances, having to make tough decisions to properly manage their diabetes. She joined others in lobbying Queen's Park for better care under OHIP.

In 2004, she wrote a letter to the Toronto Star, stating: "Although I am managing well in my business, I am seriously thinking about closing down business and again working for someone else in order to have medical insurance for my diabetes.

"If the insulin pump was covered by OHIP, not only could I have access to a device that has been proven to keep blood sugars continuously at a normal level, I could also keep and even grow my business."

But before the lobbying efforts were successful, Instenberg finished her work with GM and was able to find other contracts with Canadian Tire. Recently, she was offered a permanent position at the giant retailer and accepted the job.

"There's a big jump going from being a contractor to becoming an employee, like all the taxes, but I had to think about that because I'm a diabetic."

While she admits to still working long, late hours and sometimes missing meals, Instenberg says she's hopeful switching to an insulin pump will make life a little easier. "It would be attached to me all the time, you know, it goes where I go. That's why I want a pump."