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Toddler's quality of life hinges on B.C. drug decision

Posted on 03/09/2011 12:00am

Three-year-old Rosie Pallone has PKU - a rare genetic condition. If left untreated it can cause severe brain damage. (Nicole Pallone) Sept. 30, 2011

By: Sarah Massah, ctvbc.ca
Date: Monday Oct. 3, 2011
A B.C. mom says her daughter's quality of life will plummet if the provincial government doesn't recommend her medication for reimbursement under Pharmacare this fall.
Nicole Pallone's three-year-old daughter Rosie has Phenylketonuria (PKU), a rare condition in which a baby is born without the ability to properly break down an amino acid called phenylalanine.
If Rosie does not keep her phenyalalanin (Phe) levels low with a severely restrictive medical diet -- which shuns meat, eggs, pasta, lentils and nuts -- she could suffer permanent brain damage including mental retardation and behavioural problem.
"If her Phe levels get too high her behaviour is atrocious and she has temper tantrums, which is completely uncharacteristic," said Pallone. "Without treatment we are worried she will have ADHD, trouble focusing - everything that labels a kid a trouble kid."
For two years, Rosie has been participating in a study at BC Children's Hospital for a drug called Kuvan. With the "miracle drug" Rosie can have double the amount of protein and more variety in her diet, said Pallone.
According to Pallone, the Drug Benefit Council is expected to recommend to the Ministry of Health whether or not the drug will be funded. Without funding, the cost for Rosie's medication is $40,000 a year - a price tag that the Sparwood family can't afford.
"It is totally unattainable to us and probably the vast majority if it's not covered," said Pallone. "For us it's an extra tool to help protect her little brain."
Currently, the treatment for PKU includes a meticulously measured diet that is both restrictive and expensive, said Pallone.
"Everything has to be weighed and managed to make sure we hit the right amount of Phe," said Pallone. "It's very expensive to adhere to - a regular box of macaroni and cheese is $1.19 and for her special kind it's $13.50."
B.C. is one of only three provinces that do not provide any financial support for low-protein foods for PKU sufferers.
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