Parents of kids with Type 1 diabetes are asking the Yukon government to pay for equipment they say will improve their children’s lives.
Rachel Hrebien and Sharon Nehring-Willson said the Yukon government refused to cover the costs of continuous glucose monitoring systems (CGMS) for their children.
Nehring-Willson is the mother of Sawyer, 2, who was diagnosed with Type 1 diabetes when he was 16 months old.
Sawyer can’t always express when his blood sugar levels are too high or too low, Nehring-Willson said, hence the need for the monitoring system.
Type 1 diabetes patients must regularly check their blood sugar level throughout the day and inject insulin.
That’s where continuous glucose monitoring systems, also called Dexcoms, come in. A sensor inserted in the skin sends blood sugar levels to a receiver, which parents can monitor.
But the equipment doesn’t come cheap: a complete unit costs around $1,900. The sensor has to be replaced every seven to 12 days, bringing annual costs to over $5,000.
Hrebien got the CGMS after her daughter Emersyn passed out at school because her blood sugar levels dropped too low.
“Since she had it on, we caught so many lows,” she said. “It’s one of those things we’re very thankful for.
“Without the Dexcom, we’re not seeing the trends, not seeing the lows.”
But even with the CGMS the parents still have a lot of work to do.
Hrebien said she had to train school staff, and has to bring additional insulin shots to school.
Nehring-Willson said she and her partner can afford the equipment because of their jobs, but questions the government’s decision not to fund it.
“The fact they won’t approve it is completely illogical,” she said.
The equipment is cheaper than having to medevac patients to Vancouver, she said. She estimates the cost of testing strips and related equipment to be over $15 per day for her son.
“Moving to this type of equipment in the long run is going to be cheaper,” she said.
A doctor at B.C. Children’s Hospital recommended the equipment, signing a “certificate of medical necessity” for Sawyer.
Patients with Type 1 diabetes will have health issues in the long run if their blood sugar level isn’t closely monitored and kept in line.
High blood sugar levels mean the potential for eyesight issues, even loss of limbs and organs such as kidneys. Lower blood sugar, on the other hand, can lead to loss of consciousness, even convulsions.
“It doesn’t cure diabetes. It’s not absolutely necessary but very helpful,” said Constantin Polychronakos, a paediatric endocrinologist and professor at McGill University.
He has been lobbying the Quebec government for years to cover the cost of CGMS when prescribed by a specialist.
He called the equipment a “good investment for the government” because of the health complications it can prevent.
“But governments don’t think like this,” he said.
Without CGMS, patients don’t always know how their blood sugar levels vary. And injecting insulin is always a “guessing game,” Polychronakos said.
He said CGMS paired with glucose pumps, which deliver insulin at lower, more regular doses, will be able to fully replicate what the pancreas is supposed to do.
The Yukon Department of Health and Social Services told the News that a working group — comprised of drug program representatives, an independent pharmacist and an independent doctor — decides which special treatments the health department should cover.
It looks at at drug reviews professional organizations published and what other jurisdictions cover. In this case no jurisdiction in Canada cover the costs of CGMS. The federal government doesn’t cover it either under the non insured health benefits.
The working group found “there has been no demonstrated improved outcome and/or management of diabetes for users of the CGMS,” spokesperson Pat Livingtold the News in an email. “They do not have better sugar control or improve disease management when compared to people using glucose testing strips.”
Several requests to cover the costs of CGMS have been made in the past years, Living said, but none has been approved.
Contact Pierre Chauvin at firstname.lastname@example.org
CLARIFICATION: This story has been updated to better explain the process the health department uses to determine whether to cover the use of new drugs or medical equipment. It has also been updated to reflect that the findings are those of the working group members, not the department spokesperson.