A nine-year-old Langford girl will continue to have the cost of her life-saving medication covered by the province while a review of the decision to end funding is underway.
Health Minister Josi Osborne said Tuesday the ministry will extend coverage for Charleigh Pollock’s drugs while the urgent review is underway.
“The review needs to be done thoroughly, it needs to be done well. The family physician has brought forward new information,” Osborne said.
Mother Jori Fales said the family is grateful that the ministry has agreed to fund at least two more infusions of Brineura for Charleigh, who has Batten disease, a rare progressive and fatal neurodegenerative disorder.
The drug, an enzyme-replacement, costs about $1 million a year.
“Charleigh should not have to suffer while discussions are being had,” said Fales, adding her daughter’s last funded infusion of Brineura is now set for March 27.
The family of the Happy Valley School student has been fighting to having the medication coverage continue, saying stopping it would hasten Charleigh’s death.
For the past five and a half years, Charleigh has received an infusion of Brineura every two weeks, which has stopped the multiple daily seizures that started when she was three.
Charleigh’s family was told this month that funding for her medication was ending, after the Canadian Drug Expert Committee — which makes drug-funding recommendations to the provinces — concluded she no longer meets the criteria to receive the medication.
The family is urging that the medication coverage continue, however, saying Charleigh is happy, thriving, laughs, interacts with others and loves swimming.
The criteria for remaining on Brineura “needs to be updated immediately,” Fales said.
“Charleigh should not lose her life and suffer horrendous symptoms due to outdated criteria.”
The daily wait for information is taking a toll on everyone who loves Charleigh, said Fales, who called it a “very traumatic and devastating time.”
