With only one day notice, the Ministry of Health has ruled that the funding for the medication to preserve the quality of life for Charleigh, a terminally ill nine-year-old from Vancouver Island, will be discontinued.
Charleigh Pollock has a neurological disorder, called Batten Disease.
Her mother, Jori Fales, said a drug called Brineura stabilizes her condition, but it’s expensive at $800,000 a year.
“Brineura slows down the progression of her disease. It has ended her seizures. It keeps her quality of life thriving. She continues to live the best that she can with this disease,” Fales said to CHEK News on June 13.
Canada’s Drug Agency (CDA) says definitive conclusions cannot be drawn into Brineura’s effectiveness for seizure control.
In February, Fales caught the attention of many around B.C. and beyond, after sharing that the provincial government made the decision to stop funding the medication for Charleigh. After public outcry, the B.C. Ministry of Health requested a review of the medication to see if it would be funded under the BC Expensive Drugs for Rare Diseases program.
Now the review is complete, and the decision is that the funding for the medication will stop, with Charleigh’s last funded treatment scheduled for June 19, just one day after the decision to stop funding.
The CDA review found that Brineura is effective in slowing symptoms in patients with Batten Disease up until they have a motor-language score above three, which means they still have some functional abilities.
Once the motor-language score drops below that threshold, evidence shows that it is no longer effective in slowing a patient’s decline.
“There are new findings and advancements in medicine and science every day – including the benefits of existing drugs that we didn’t know about before,” Josie Osborne, B.C.’s minister of health said.
“It is understandable that anyone would hold out hope that the CDA’s comprehensive review of the latest evidence in Canada and around the globe could have brought us to a different conclusion, unfortunately, that was not the case.”
The CDA review also says that all jurisdictions that fund Brineura follow the same criteria to discontinue coverage.
“As minister, my job is to make sure that BC’s drug review processes are rigorous, independent and based on evidence,” Osborne said.
“No matter how challenging and difficult it can be, we must follow the evidence and the recommendations of medical experts, who have clinical experience with rare diseases like this.”
Osborne said the funding will not be extended in order to provide the family more time to process the news.
“This is a final decision upon recommendation, again, of our team of experts that provides these recommendations based on clinical criteria,” she said.
“Certainty is a really important factor in any patient’s journey, and I think also for Charleigh and her family as well.”
“We extended the treatment whilst this review was underway by the Canada Drug Agency, and again, wanting to ensure that all recent evidence and information was able to be reviewed and a determination made whether any changes should be brought and unfortunately, and it is unfortunate, because I think we all wished that it could have been different, but the evidence is not there to support any changes to the discontinuation criteria.”
Brennan Day, the BC Conservative critic for rural and seniors health, called out the Ministry of Health for only giving one day’s notice before the final treatment for the decision to end funding.
“This kind of communication breakdown, leaving a family in limbo, then dropping devastating news with no time to prepare is inhumane,” said Day.
“The province has the power to act, and it has in other cases. If they wanted to help, they would.”
Fales tells CHEK News she is taking the day to process this news and will issue a statement to share on June 19.
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With files from CHEK’s Mary Griffin and Jordan Cunningham