Monitoring technology ‘life or death’ for Type 1 diabetes
Niagara Falls family wants province to fully fund devices that also improve quality of life for kids and adults with auto-immune disease
Like every other kid nowadays, Ava Everson loves her gadgets. But not for their entertainment value.
To the eight-year-old Niagara Falls girl, the gadgets she wears and holds can be life-saving technology.
Ava has Type 1 diabetes, a chronic, dangerous disease that can cause wild swings in blood glucose levels that require constant vigilance for both her and her parents.
They’ve joined a push by other families living with it to convince the provincial government to cover newer technology that monitors blood glucose levels under the Ontario Health Insurance Plan (OHIP).
With Type 1 diabetes, the body’s immune system attacks the pancreas, which produces insulin that allows the body to use sugar from food for energy. Insulin also keeps blood sugar from getting too high or too low.
Ava wears an insulin pump, but also wears a continuous glucose monitoring (CGM) device known as a Dexcom, which sends an alert to watches that Ava and her parents wear if glucose levels become too high or too low.
The device costs thousands of dollars a year, but luckily the family has employment insurance that covers it. Other families aren’t so lucky.
“This is totally life or death, there’s no question,” said Ava’s dad, Jason.
Ava was diagnosed at age twoand-a-half, after her parents demanded doctors find out what was causing insatiable hunger and thirst in the girl, and terrible tantrums.
Once, drinking just an ounce of a frozen ice drink played havoc with her blood sugar.
“She was hallucinating,” said Jason. “She was blinded. She didn’t know where she was.”
After she was diagnosed, the girl endured 15 finger pricks to test for blood sugar daily until she was fitted with her first Dexcom.
Just a week later, the device likely saved her life.
Jason said the family returned from a trip to Safari Niagara and Ava and her mom, Kari, were both napping. He got an alert from the monitoring device that Ava’s blood sugar had plummeted to a level of 2.1. Anything below four is considered dangerous.
Jason quickly gave her chocolate milk and marshmallows to get your blood sugar up.
“She could have died that day,” he said. “That saved her life.”
Even with the CGM, managing the highs and lows of glucose with Type 1 diabetes is no easy task, said Jason.
“It’s every minute of every hour of every day, 365 days a year,” he said. “It doesn’t stop.
“Everything she eats and drinks has to be weighed and measured to figure out the carbohydrates and the fibre.”
Ava’s family is supporting a petition by Maya Webster, an eight-year-old Niagara-on-the-Lake girl with Type 1 diabetes, who is calling for the province to fully fund CGC devices that can set families back $2,400 to $4,000 a year.
Niagara Falls riding MPP Wayne Gates went door-todoor with Maya collecting signatures and plans to bring the petition — part of the ‘Access for All’ campaign initiated by the Juvenile Diabetes Research Foundation, to Queen’s Park on Nov. 27.
Gates said people will oppose such a significant change to OHIP, but said it would actually save the province money by reducing hospital visits due to complications. Maya, for instance, had to be hospitalized for upward of a week before she got her CGM, he said.
“I believe we have an opportunity here to save lives, cut hospital trips and cut health-care costs,” he said. “Hospital visits are very costly.”
Kari said Ava was hospitalized four times in her first year after being diagnosed before she got her CGM, for Scarlet fever, pneumonia, roseola and Fifth disease.
The CGM device also saves the expense of costly blood test strips that can cost more than $5,000 a year, she said.
“People don’t realize how expensive diabetes test equipment is,” said Kari.
The technology can greatly improve quality of life for children and adults with Type 1 diabetes, Gates said.
“Maya is now a very active young girl, participating in basketball and having a quality of life that every kid and adult should be able to have,” he said. “This is the right thing to do.
“We’re going to continue to pressure the province to do the right thing.”
Kari said stubborn misconceptions about Type 1 diabetes persist, such as the belief that like Type 2 diabetes it can be controlled with proper diet and the belief that families are somehow to blame for Type 1 diabetes because of the food they eat. Type 1 diabetes is an auto-immune disease that has nothing to do with lifestyle, she said.
“It’ll never go away with exercise or diet,” said Kari. “It’s a lifelong, chronic disease until we find a cure.”
Ava, who can also see her blood sugar levels in charts on her smartphone, admits dealing with Type 1 diabetes is difficult.
“Sometimes I just feel, like, why me?” she said. “Why do I have to have diabetes? Sometimes it’s hard.”
The girl, who still has to have blood drawn every three months with needles, hopes one day there’ll be a cure
“I want a cure so I can have snacks when I want and not … always be thirsty and not have to take needles.”
But Ava said there is at least one bright side.
“I’m the only one who gets candy at school,” she said. “Everybody is so jealous of me.”
For more information visit www.jdrf.ca