Charleigh Pollock, a nine-year-old girl fighting Batten disease, a terminal neurological disorder. She is at a scary point in her treatment because British Columbia has discontinued covering her medicine Brineura. Yet on Wednesday, the provincial government took an additional step that exceeded even that move’s egregiousness and generated widespread outrage. Her family, healthcare providers, and community supporters insist that the drug is key to keeping her condition stable.
Charleigh was diagnosed with Batten disease mere weeks before her 4th birthday. This unique disease leads to debilitating seizures and a progressive loss of mobility. Her family has depended on Brineura for all these years. The medicine, given every other week, has been an important factor in helping to mitigate the symptoms and impacts her illness has brought. The province just recently pulled its funding. They claimed that there isn’t enough clinical evidence to prove that Brineura continues to be of benefit to Charleigh.
“The ministry found that there was no evidence to support changing the discontinuation criteria or to support continued coverage of Brineura, given the advanced stage of Charleigh’s condition,” stated Josie Osborne from the provincial health ministry. This decision is a direct and potentially lethal attack on Charleigh’s health. Doctors largely agree that without Brineura, she will quickly and painfully lose her ability to walk, talk, and eventually breathe.
The annual cost of Brineura treatment is around $800,000. Charleigh’s family has been pursuing alternative funding vigorously, including through a GoFundMe page. It launched in 2019, and they’ve brought in just under $150,000 with it so far. Those dollars only go towards the basics. This covers travel, nursing support, care and travel for Charleigh’s complex needs.
Now, as Charleigh’s condition is worsening, Charleigh’s family has issued a call for support. Support to get nursing care and 24-hour help for her as her disease continues to deteriorate. “If a donor can come out and pay for an infusion of course that would be of course the best option,” said community advocate Masika Allan. But other than that, for right now, being able to raise funds for the family so that they can hire nursing care because there are not enough nurses, you know…that’s the best way to help.
Doctors, nurses and public health workers have spoken out against the move to eliminate funding. Dr. Ineka Whiteman expressed strong support for Charleigh’s ongoing treatment with Brineura, stating, “This child is without a doubt benefiting from this drug.” Dr. Whiteman doubled down on the unusual, nonsensical criteria that the provincial health authorities have been using to assess treatment effectiveness. This is really, really setting a very, very dangerous precedent. This big decision is now based upon the discontinuation criteria. That ignores mountains of real-world data and the lived experiences we’ve heard from patients and caregivers that show the benefits this drug provides.
It shouldn’t take a collapse for this to happen, but Langford MP Jeff Kibble has led the charge. He is calling on the Minister responsible for the CDA to reconsider their decision, which resulted in treatment option for Charleigh being withdrawn. “I am asking that you immediately review their decision… and that the recommendations from Charleigh’s medical team and up-to-date research are considered in this review,” Kibble stated.
BioMarin, the producer of Brineura, has indicated that they would work with her family to find a solution to ensure Charleigh’s access to this treatment. A spokesperson for the company highlighted their stated commitment to ensuring treatment decisions are made collaboratively between families and their healthcare providers. “We strongly believe treatment decisions should be made between children’s families and their healthcare providers and encourage health authorities to do everything possible to facilitate that under all circumstances,” they said.
While Charleigh’s family continues to face this unfortunately common and crippling landscape, they are still poised to receive help from their local community as well as local health officials. The dire situation faced by Ryan and his family highlights the ongoing discussions on healthcare accessibility in Canada and the funding of rare diseases. Advocates continue to rally around Charleigh, emphasizing that her case may well represent the experiences of many families facing similar challenges.
