 Connor Laing, 10, holds his medication while his mother looks on. |
On Saturday, the Kelowna woman, along with 170 other families, gathered in Vancouver to ask the government for more support for PKU care in the province.
"We feel that we are underfunded. There's evidence right now that the drugs available work but they wont fund it," said Laing.
PKU, or phenylketonuria is a rare, brain-threatening metabolic disorder. Laing's 10-year-old son Connor was born with the disease.
People with PKU aren't able to process phenylalanine, or "Phe", an essential amino acid found in protein in most foods. To combat the disease, they have to eat a strict low-protein diet to protect their brains from damage. If left untreated, the symptoms can range from mild cognitive impairment to severe mental retardation.
Health Canada approved the drug, Kuvan, as the only drug therapy for the disease, but the B.C. government hasn't agreed to fund it.
"B.C. has the least amount of support from the provincial government for the families of PKU," said Laing.
As of Feb. 28, the Ontario government will publicly fund the drug.
Connor has been fortunate, however. The family has been able to get the drug for their son through private insurance.
"If it went untreated he would have had brain damage, but he's fortunate that he has access to the drug and that his case has been mild," she said.
But Laing knows that other families don't have that option. "We're fighting for access for all. We know this drug works and can make a difference in the lives of others. We're worried we wont have access in the future," she said.
For now, the families of PKU patients are asking the B.C. government to consider a policy proposal called, "A Comprehensive Brain Protection Strategy for People with PKU: Getting B.C. from Worst to First." They're asking for an annual $2.8 million investment by the B.C. government to improve treatment and care for PKU patients.
Laing, has already spoken to her MLA Steve Thomson about getting help.
"He has promised to bring forth any materials I provide to him to the parties. He understands where we're coming from and knows that we do need his help," she said. "But we want to go straight to Christy Clark. Her platform is, 'Family First,' so we're asking her to consider this."
