Jaclyn Kuffel and John Jerrett’s eight-year-old son, Peter, was diagnosed with a human growth hormone deficiency after the parents noticed their son wasn’t growing.
That was when the family lived in Turkey, where Jerrett had a job with the Canadian Armed Forces at the Canadian Embassy.
They initially saw a pediatrician there, then were observed by a pediatric endocrinologist for two years — during which time Peter dropped to the 1st-percentile for height for his age.
The endocrinologist then prescribed Genotropin — an injectable human growth hormone. The family said Peter began growing once he started the daily medication.
“He began his treatment’s in February,” Kuffel said.
“Since then he’s grown eight centimetres — whereas in the previous six months before he started his medication, he hadn’t grown at all.”
They moved to Edmonton in July and brought as much medication as they could, but now it’s running out.
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The family said Genotropin is a restricted drug in Canada and only endocrinologists are allowed to prescribe it.
“He doesn’t know he only has a week left,” Jerrett said. “We just told him we’re working on it and mom and dad will figure it out — but mom and dad have hit a wall.”
Because their prescription and diagnosis is from another country, it’s not valid in Alberta.
“To be valid, a prescription must be provided by a person authorized to prescribe under Alberta or federal legislation,” Alberta Health said in a statement.
For coverage under the province’s specialized high cost drug program, it has to be prescribed by a pediatric endocrinologist. The family said they basically have to start from scratch.
“We’re just going around in circles, trying to figure out how to get an answer and how to move forward,” Jerrett said.
Kuffel says it could months, or up to a year, before they see that kind of specialist because there are about 400 other patients on the waitlist.
Late Tuesday afternoon, Kuffel and Jerrett said they found out they will be able to source the medication themselves — but paying out of pocket will cost $1,000 a month. That price will increase as their son grows and his dose increases.
Right now, they’re unsure if insurance will cover anything. They say they’re happy to get the medication, even if they have to pay out of pocket.
Alberta Health Services did not respond to Global News’ questions about wait times before deadline. For more on this story, watch the video at the top of the page.
— With files from Karen Bartko, Global News
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