There has been some relief for the family of a terminally ill Langford girl, who had the funding for her life-sustaining treatment pulled by the province.
Feb. 27 was to be the last day nine-year-old Chareigh received treatment for the rare genetic disorder Batten disease. Without the bi-weekly enzyme treatment, Charleigh's mom Jori Fales warned her daughter鈥檚 quality of life would deteriorate, with daily seizures one of many consequences.
But while an 'urgent review' of Charleigh's case is carried out, the Ministry of Health has told the family they will fund an additional two rounds of treatment.
Charleigh's last day for treatment funded by the province is now set for March 27.
Fales says while her family is "grateful" for the extension, they remain anxious about the outcome of the review.
"Charleigh should not have to suffer while discussions are being had," she said.
"Although this news has just prolonged our anguish of what the final result will be. This is a very traumatic and devastating time, and waiting each day for information is taking a toll."
Speaking to media at the legislature on Tuesday (Feb. 18), Health Minister Josie Osborne confirmed Charleigh鈥檚 drug coverage will be extended while the review is taking place.
鈥淚t's very, very important to me that all of the facts of this case are reviewed,鈥� she said.
鈥淚t needs to be done thoroughly, it needs to be done well,鈥� she continued. 鈥淭he family physician has brought forward new information. This is new and we want to make sure that is well accounted for in the decision making鈥�
After five years of funding, the province told Charleigh's family in early February the funding for the drug Bineura would be coming to an end. It was a decision that confused Fales and Charleigh's medical team who believed the treatment had 鈥渄ramatically slowed down鈥� the progression of the disease.
The decision to withdraw funding under the Expensive Drugs for Rare Diseases program was made by medical experts based on clinical evidence and recommendations from Canada鈥檚 Drug Agency, explained Osborne on Feb. 10.
Fales says the clinical criteria used for the approval of Brineura is outdated and "needs to be updated immediately."
"The criteria for Brineura were developed when we knew very little about the drug and its long-term impact on children with Batten disease," she said. "In the intervening years, we鈥檝e learned so much more about the drug, its positive impact on patients and the improved quality of life for children.
"Once our information about these drugs evolves, so too should the criteria we use to decide when we start or stop using it in children.
"Charleigh should not lose her life and suffer horrendous symptoms due to outdated criteria," she added.
