Skip to content

End of insulin pump program distressing to Okotoks family

The cancellation of a Provincial Insulin Pump Therapy Program has the Southern Alberta parents of a toddler with type 1 Diabetes very worried about what it will mean for their family.

OKOTOKS, Alta — Although the provincial government has said the discontinuation of the Insulin Pump Therapy Program is on hold for the time being, the anxiety for parents of children with Type 1 Diabetes has anything but subsided.  

On May 4, the Province released a statement indicating that the pump program would end as of Aug. 1, with a suggestion that current patients enrol in a non-group insurance plan under the Alberta Blue Cross, which would require the payment of premiums and a co-pay.  

Those affected by this decision raised the alarm, forcing the government to pause and reconsider. However, as of May 20, the government website still noted a cease date of Aug. 1 for the program.  

Among the more than 4,000 Albertans receiving life-saving diabetic care through the program is two-and-a-half-year-old Heyden Hebenton, who lives just south of Okotoks with her parents, Michelle and Jesse, and little sister Lily.  

This time last year, Heyden was diagnosed with Type 1 Diabetes. Since then, her parents have had to become experts on their daughter’s condition, monitoring her blood sugar 24 hours a day to ensure it doesn’t go too high or too low.  

“It has been life altering, obviously for Heyden, but for caregivers as well, it changes everything,” said Michelle. “You are constantly monitoring blood sugars and making hundreds of additional decisions a day that definitely affect her life.”  

Jesse recalled bringing Heyden home from her extended stay at the Alberta Children’s Hospital over the Victoria Day weekend last year. At the time, they were still adjusting following the arrival of their youngest daughter. 

Heyden’s mom and dad took her into the emergency room when she came down with an illness that wasn’t resolving itself.  

It was discovered the little girl was in a state of DKA – diabetic ketoacidosis – where blood sugar and blood ketone levels skyrocket to dangerous levels.  

Jesse said his daughter couldn’t walk or eat; she was nearly incapacitated.  

“It’s quite dangerous,” said Michelle.  

When they were at the hospital, the Hebentons were put through a crash course on T1D. Michelle recalled receiving different modules each day to get up to speed on the family’s new normal.  

Heyden now has a continuous glucose monitor (CGM) on her arm, which continuously monitors her blood sugar and sends updates to her parent’s cellphones. Jesse said they often check every five to 10 minutes.  

If her monitor fails, Michelle and Jesse must do a finger poke on their toddler to get a reading.  

A blood sugar spike could be caused by many different factors, the parents said. Carbohydrates are usually the main culprit, but other foods can cause spikes, as can increased activity and sickness.  

“It's a constant balance of calculating how much carbohydrates [are] in foods, so we have to carb count every meal or everything that she's eating,” Michelle explained. “Then she is dosed with insulin according to how many carbohydrates she eats.”  

This experience is made smoother with the use of an insulin pump, which is on Heyden’s leg. A pump ensures a smaller, more accurate dose of insulin is put into her body, Jesse said.  

According to him, the lowest dose available to be given via a needle (referred to as multiple daily injection or MDS) is 0.50 units. This dosage is too high for Heyden, who weighs under 35 pounds. Individuals with diabetes can face health complications if insulin is given in improper amounts. 

Using an insulin pump allows her to be micro-dosed in amounts as small as 0.05 or 0.10 units. It also allows Michelle and Jesse to use their phones to monitor Heyden’s levels instead of having to prick her finger.  

Without her pump, Heyden would be subjected to 20 injections a day, much to the dismay of her parents.  

“While she's sleeping, while she's awake, if she's playing, if she's eating — 20 needles, 20 needles in one day,” said Michelle.  

“The mental aspect of that, no toddler should have to go through that,” Jesse added.

A few weeks ago, a letter addressed to Heyden arrived in the mail from Alberta Blue Cross, outlining the details on plans to end the pump therapy program.  

The Hebentons explained that through the program, their daughter is given a new pump every five years — pumps typically cost about $6,000. The tools to communicate with that device are also included in the plan, as are the insulin-injecting pods, which are replaced on Heyden every three days. They also receive test strips, lancets and a finger poking tool. 

Costs still add up for the family though, with insulin costing $200 a month and CGM replacements costing $300 a month. 

The Province has said the move to a non-group insurance plan will ensure the program is "sustainable." According to a government release, the cost of the program has increased from approximately $9.5 million in 2015 to more than $20 million in 2020-2021. 

The Hebentons and other T1D advocates have raised the question on whether the money the government is trying to save will really be pocketed with an expected increase in diabetic complications following the conclusion of the pump therapy program.  

“That's the general retort is, have they considered the impact of diabetic complications on the healthcare system and how much that's going to cost?” Michelle asked.

Heyden’s family also attended a telephone town hall May 19, as did 300 members of the diabetic community. They said there were no true answers given during the event and it seems there is a general lack of understanding on the Province and public’s part when it comes to T1D.  

“I think it's just ignorance, like, they just don't understand,” said Jesse. “This is a 100 per cent lifesaving device that we use for our two-year-old and to be given it and then taken away is just like, I don't know.”  

“I'm disappointed and mad,” said Michelle. “To be honest, I think that they're pricing users out of affordable access to something that is so critical to them. 

“I just wish the government would have considered other areas of the budget that they could have made cuts on that didn't really impact the lifespan of my two-year-old daughter.” 

push icon
Be the first to read breaking stories. Enable push notifications on your device. Disable anytime.
No thanks