Canadian Province Urged to Look Into Covering Treatment for Rare Disease
June 11, 2015
PKU is a rare disease. About one of every 12,000 infants born in Canada will have it. So imagine the odds that a Kingston couple has two sons, both born with the disease.
Declan and Emmett Compeau are like any other toddlers their age, full of energy.
“Our boys are both happy, young boys, doing exactly what any other child would do, just with a special diet.”
A very strict diet. Declan and Emmett will never be able to eat meat and dairy, among other things. That’s because both of them suffer from PKU – a brain threatening metabolic disorder, which makes it so the body cannot process an essential amino acid found in dietary proteins. If not properly treated, PKU can lead to severe neuro-cognitive and intellectual development issues. The parents recall the moment they learned of their first son’s diagnosis.
“We were terrified, we were confused. We didn’t know anything about PKU – we had never heard about it before.”
“We basically broke down, we didn’t know what it meant – we didn’t have any idea of what PKU was, or how to treat it or what would be the outcome.”
There is only one known treatment for PKU – The drug “Kuvan”.
“Very few families could afford it. At the price that Ontario has negotiated the drug would be 70-thousand dollars per year.”
John Adams is the CEO of CanPKU – a PKU advocacy and awareness group. He’s spent part of May lobbying the Ontario government to cover Kuvan through OHIP. For now, Tanya and Bryan have coverage through their own private insurance.
“It could be stopped at any time and once you receive the coverage, and once your children start the medication it’s not a matter of something you can just decide to stop on a whim.”
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