Community rallies around Vancouver Island girl with rare disease whose medication has been cut off
Posted June 26, 2025 12:09 pm.
Last Updated June 26, 2025 2:45 pm.
A community has been left in shock after the B.C. government confirmed it’s pulling drug coverage for a 9-year-old girl with a rare terminal disease, who advocates and doctors believe could live longer with that medication.
Last week, the Ministry of Health explained that it is discontinuing its coverage of Brineura, one of the only treatment methods for Ceroid Lipofuscinosis Type 2 (CLN2), otherwise known as Batten disease. While it is not a life-saving drug, it aims to slow the progression of the disease.
CLICK HERE TO LISTEN TO 1130 NEWSRADIO VANCOUVER LIVE!Lori Brown, president of a Canadian group advocating for Batten disease families, says the government’s claims that nine-year-old Charleigh Pollock is no longer getting any benefit from taking Brineura are not true.
Brown says it has kept her alive longer than she might have lived without it, and has helped her quality of life.
“[Brineura] is definitely working. It is definitely helping Charleigh keep all of her skills, all of that vibrancy, all of her personality. It’s such a huge difference to see her compared to children who did not have Brineura at this same age,” Brown told 1130 NewsRadio.
Brown’s own son, Daniel, died from Batten disease at the same age Charleigh is now, and Brown says the difference between their cases is night and day.
“My son, when he was this same age, was drastically different from Charleigh. He was not vocalizing. He was not reaching for people, or toys, or things like that. He was not going to school. He was not eating by mouth. He was basically bedridden, and the only communication he had was to maybe cry, or whimper, or tell us when he was upset or in pain,” she explained.
“Seeing that and seeing Charleigh at around the same age — we lost my son Daniel when he was two months before his 10th birthday — the difference is stark. … [and that] definitely is Brineura,” Brown said.
The Ministry explained last week that Brineura has clear criteria for initiation, continuation, and discontinuation, and Charleigh has deteriorated to the point where there is no clinical evidence that continuing treatment would have further benefits. The cost of the drug is not a factor when considering whether to cover treatments, the Ministry asserted.
Charleigh’s mother, Jori Fales, has been advocating for her daughter’s treatment for years after Charleigh was diagnosed with Batten disease in 2019. The nine-year-old is the only person in the province diagnosed with the condition, with around a dozen reported cases in the entire country.
Batten disease usually presents between the ages of two and four, and by about six years old, patients lose their vision, require the use of wheelchairs, and are fed via gastrostomy tubes.
But Brown says the Ministry is looking at points on a checklist, rather than the child behind it all. She’s worried the Ministry’s decision will have a cascading effect on other children around the globe suffering from the rare disease.
Brown also believes the province didn’t consult with Batten disease experts, nor with Charleigh’s care team, and hasn’t looked at this from a place of empathy.
“They’re expediting her demise,” she said.
“There’s more beyond that clinical scale that measures the motor and language scores, and they don’t have robust studies on everything that encompasses all of that quality of life,” Brown stated. “It’s more difficult, more challenging, to chart quality of life. And we, the Batten disease community globally, and all of our clinicians and experts who deal directly with children who have Batten disease, realize that there is a significant improvement in quality of life and other areas besides just that motor and language scale.”
Brown said that up until last week, Charleigh’s care was being determined by her family and experts who were part of her care team. Now, it’s been taken out of their hands.
“Now it’s coming from outside, from people who are not experts on Batten disease, who are taking information that they’ve read, rather than real-life application. So in this case, it doesn’t translate very well,” she said.
The Ministry shared last Wednesday that the Canadian Drug Expert Committee at Canada’s Drug Agency found insufficient evidence to make definitive conclusions about Brineura’s potential benefits to patients’ quality of life, seizure control, and mortality outcomes. The CDA works with science and the best clinical advice from clinicians, the Ministry stated.
But Brown argues that the data and numbers miss out on a key feature — looking at it from an empathetic, human-centred approach.
“My message to the minister would be to consider the quality of life and maybe take more of a human approach rather than reading the data,” she said.
“I know that there were experts consulted within the Canada Drug Agency review that they took the information from. However, has the Ministry taken a chance to consult with any Batten disease experts themselves or herself, personally, has she consulted with Charleigh’s medical team or anyone who’s really familiar with Batten disease, with the natural progression and with Brineura?”
Governments should not be involved in health care decisions: Premier
Speaking at an unrelated media availability on Wednesday, Premier David Eby explained that he believes governments and politicians should stay out of health care decisions, adding that they should be made by medical experts and doctors.
“I have seen nothing positive come from politicians [who] get involved in health care decisions for individuals in other jurisdictions, particularly where it seems to be increasingly popular,” Eby said. “These are really hard and difficult and profound decisions that are made by medical physicians every day, whether or not a particular course of treatment is providing benefit or not, I support them in those really difficult decisions.”
“At the same time, it’s important to acknowledge how profoundly awful this particular case is, what these parents are going through with a terminally ill child. I wouldn’t wish [this] on anybody, and I certainly pray that no other British Columbians have to face the kind of trials this family is going through.
“There is no happy solution here and and the best that we can do as government, in my opinion, is to allow the experts in this area, the physicians, the experts in these illnesses, to make the decisions around care that they need to make.”
Eby added that politicians making health decisions for patients, “if I can say, it’s actually worse.”
Decision to stop medication is ‘morally wrong,’ Opposition critic says
Conservative MLA and Critic for Rural Health and Seniors Health Brennan Day says the BC NDP government needs to change their position on Charleigh’s care.
“I certainly expect more leadership out of the government than this. On this file, the experts have now spoken up, weighed in on this. They disagree with the decision that the government made, and I think that they need to be listened to,” Day told 1130 NewsRadio.
Day is shocked by the government’s conclusion and believes the decision to cut Charleigh’s access to Brineura is morally wrong.
“I speak to [Charleigh’s mother] Jori fairly regularly, and I let her know that we will be fighting for her right to the end, whatever that means, and whatever she needs from us as the Opposition,” he shared.
A father to a seven-year-old, Day says Charleigh’s story tears him up every day.
“Obviously, they have to listen to the experts, but they have to listen to the right experts and the medical teams when they make these decisions,” Day said.
“They certainly have it within their power and authority to reverse this decision, and they should take that opportunity to do the right thing.”
