June 19 will be a significant day for nine-year-old Langford girl Charleigh Pollock 鈥� it will be the last day she receives life-sustaining province-funded treatment for her terminal illness.
Pollock lives with the rare genetic disorder Batten disease and has been receiving bi-weekly enzyme replacement treatment, funded by the province for over five years.
Her mom Jori Fales says the drug Bineura has dramatically slowed down the progression of the disease, reducing the number of daily seizures from 鈥渁lmost a hundred a day down to none.鈥�
But in February, the family were told Pollock no longer meets the criteria for Brineura and funding would end that month.
Several reprieves followed, with the ministry agreeing to extend funding until June 19 to allow for a review of Pollock鈥檚 case.
Fales has maintained throughout that the clinical criteria used for the approval of Brineura are outdated and need to be updated immediately. Something she hoped would be considered as part of the review.
Canada鈥檚 Drug Agency (CDA) published its findings June 13.
According to the Ministry of Health, the CDA鈥檚 report has found the discontinuation criteria in Pollock鈥檚 case have been met and 鈥渢here is no clinical evidence that continuing treatment would have further benefits.鈥�
Fales has said she is processing the news and is unable to talk.
More to come.