Vancouver Island family heartbroken as B.C. stops funding $1M drug for girl with terminal condition
A Vancouver Island family is in shock after learning the British Columbia government will stop funding an extremely expensive medication their young daughter needs for a rare genetic condition.
Nine-year-old Charleigh Pollock is the only person in B.C. with Batten disease, or neuronal ceroid lipofuscinosis type 2 (CLN2).
It's a rare and terminal genetic disorder that causes multiple seizures daily, eventually causing brain damage.
Pollock's mother, Jori Fales, said the family is still processing the news, announced Wednesday, that the B.C. government will pull funding for Pollock's access to Brineura, a $1-million-per-year medication which is given through an infusion of fluid to the brain to slow the progression of CLN2.
"Emotions have gone from sheer heartbreak to anger to sadness; it's just been a roller-coaster the last 24 hours," Fales said.
Thursday marked Pollock's last infusion of Brineura.
Fales called the government's decision to pull funding with one day's notice before the last infusion "a little heartless."
She said her daughter has been let down.
"At the end of the day, it should have always been the decision of her medical care team, and her family and Charleigh. And none of that has happened here."
On Thursday, B.C. Minister of Health Josie Osborne said it was a tough decision to end the funding.
She said the cost of the medication had nothing to do with the reason the funding was pulled, but that it was determined Pollock's condition had deteriorated to the point where she met "discontinuation criteria" for Brineura.
"Clinical evidence shows that once a patient has declined in their motor and language functions by a certain amount, Brineura no longer has the benefit of slowing down the progression of the disease, although patients can continue to live on into mid-adolescence," Osborne said.
Fales denied that her daughter's condition has worsened.
"Charleigh is not in advanced progression of her disease. This is simply not true," she said.
Dr. Ineka Whiteman, the head of research and medical affairs for the Batten Disease Support and Research Association U.S. and Australia and head of the Batten Disease Global Research Initiative, called the B.C. government's decision "appalling."
She expressed frustration with the provincial government's emphasis on criteria to discontinue the medicine, which she said is based on old clinical trials.
She added other families around the world are becoming concerned their access to the medication may also be reconsidered.
"This is not just about a single child. This is really setting a very, very dangerous precedent."
Fales said she plans to share her daughter's journey and advocate for others dealing with the disease.
Hashtags
Try Our AI Features
Explore what Daily8 AI can do for you:
Comments
No comments yet...
Related Articles
CBC
37 minutes ago
- CBC
Class action on birth alerts gets green light against Ontario, but faces hurdles
A class-action lawsuit that hopes to help pregnant mothers who were red-flagged and had their newborns taken away by child welfare agencies has been certified to proceed against the Ontario government — but it's only a partial win for the plaintiffs. Part of the lawsuit — to hold 49 children's aid societies (CAS) across the province accountable for those "birth alerts" — failed to get the green light from an Ontario Superior Court judge. It's taken three years for the proposed class action to reach this certification ruling — a step necessary before a group lawsuit can proceed to trial. Now, a lawyer representing the plaintiffs says appealing the court's decision could delay justice for parents a bit longer. Birth alerts are notifications that child welfare agencies issued to hospitals about pregnant people they deemed "high-risk." In turn, health-care providers were required to alert welfare authorities when the subject came to seek medical care or deliver their baby. The alerts led to newborns being taken from their parents for days, months or even years. Critics have called them unconstitutional and illegal. The Ontario government issued a directive in 2020 to end the practice, following several other provinces and territories, saying the alerts disproportionately affected Indigenous and racialized mothers. I'm not fighting this alone. - Neecha Dupuis, Ottawa mom Co-plaintiff G.G., whose identity is protected under a publication ban, said she's seeking "due justice" for Indigenous women like her who've been traumatized by birth alerts. She learned in 2016 that Native Child and Family Services Toronto issued a birth alert while she was pregnant with her third child, and said she felt pressured to undergo invasive testing and mental health assessment. Workers later amended the birth alert after finding no grounds to apprehend her newborn, her claim states. "I want there to be justice and accountability," G.G. told CBC News. "Indigenous mothers and families have the severe impacts of birth alerts that continue to this day." Neecha Dupuis, who was the subject of a birth alert at an Ottawa hospital, sat in the virtual courtroom in April as the certification hearing took place. "It widened my view as to how far and how deep CAS has harmed all these people," said Dupuis, who's Anishinaabe. "It's so emotional, it really is, because … I'm not fighting this alone." Appeal to follow 'strong' ruling: lawyer This week, co-counsel for the plaintiffs Tina Yang said her team is planning to appeal the judge's decision to not certify the action against the children's aid societies. "It's a strong ruling with regard to Ontario ... [but] obviously, disappointment with regard to the denial of certification against the children's aid societies," said Yang, with Goldblatt Partners LLP, in reaction to the decision. Yang said the class action in Ontario is the first among similar claims in B.C., Saskatchewan and Manitoba to reach certification. "It's such an important cause to be litigated," said Yang. "It's not just compensation. It's about recognition of what happened, vindication of those rights ... and that hopefully ... there's a commitment to making sure that something like this never happens again." The Ontario Ministry of Children, Community and Social Services forwarded CBC's request to the attorney general, which said in an email it would be inappropriate to comment within the appeal period. The lawyers representing the 49 children's aids societies also declined, citing the same reason. The appeal period ends Friday. Should there be appeals from any parties, the matter will then go through the Ontario Court of Appeal before the class action could move forward, explained Yang. CASs did not act 'in unison': motion "Birth alerts were illegal and discriminatory," the statement of claim states, especially as they targeted unborn children. The plaintiffs' lawyers had pointed out that child protection agencies "have no jurisdiction to act in protection of, or, by extension, to require warnings in respect of, the unborn," according to the certification motion, citing a 1997 Supreme Court decision. The claim alleges the provincial government was negligent and breached sections of the Charter of Right and Freedoms, and argues "for years the Ministry failed to end what was within its knowledge a wrongful and harmful practice." However the judge found the claims against the 49 children's aid societies — conspiracy, negligence, intrusion, misfeasance in public office and breach of the same charter rights — failed to pass the test for class actions in the province. "The relationship between the 49 CAS Defendants is non-hierarchical. They are separate, distinct, and equivalent entities," the judge wrote. For instance, the owner of a Toyota with bad transmission can't sue Honda, even if Honda's transmissions are just as bad, the motion explains. "Since the CAS Defendants are independent actors, they cannot be liable in unison regardless of whether Birth Alerts were wrongful or rightful." Yang wants to stress that the denial "was not a rejection of the validity" of most of the plaintiffs' claims, "but rather a reflection of the technical class-action rules." "We still believe strongly in this case," she said. Yang added her team is exploring options suggested by the judge, such as bringing a class-action against individual children's aid societies, though that would mean finding dozens of additional plaintiffs. G.G. said she's proud the legal team is pursuing the appeal. "This class-action lawsuit places responsibilities on each and every one of the children's aid societies of the unconstitutional and racist behaviour of opening files on Indigenous pregnant persons," she said. "And that's wrong, and that's not what truth and reconciliation looks like." Ottawa mom hopeful Since sharing her story with CBC in 2022, Dupuis obtained hospital records through a freedom of information request that show child protection workers sent alerts to The Ottawa Hospital where she gave birth to her son in July 2011. "This [social worker] received three voicemail messages over the weekend concerning CAS alerts on this patient," read the hospital worker's notes from that July, which were shared with CBC. That's why Dupuis says she supports the appeal against the children's aid societies, no matter how long it takes. "They need to be held accountable for what they did to my family," she said. "If we made it halfway, that's better than no way."
CBC
37 minutes ago
- CBC
How to fight Quebec's toxic drug problem? A former user says change the conversation
This is the second of two articles looking at the issue of drug overdoses in Quebec, where the situation is heading and what needs to be done to curb this trend. You can read the first article here. The turning point in Martin Rivest's recovery from a crystal meth addiction came when his doctor, in an attempt to provide comfort, told him: "Martin, addiction is a disease." "It gave me a sense of relief. I was like 'OK, I'm not a bad person,'" said Rivest, looking back at his struggles from about 15 years ago. "A lot of people that are affected by the drug crisis, a lot of it is due to shame, stigmatization, judgment from others and a lack of respect." Rivest now does outreach work with the Association québécoise pour la promotion de la santé des personnes utilisatrices de drogues (AQPSUD), a group in downtown Montreal that advocates for safe drug consumption and is run by people who use drugs or did so in the past. The stigma, Rivest believes, doesn't just come from friends, family or strangers. It comes from people in power. Rivest and others believe that too much of the discussion around Quebec's opioid crisis ignores the perspectives of the people who, according to him, are the most knowledgeable about the issue: drug users and those who work with them. Advocates say overcoming the crisis is complicated, but it starts with an openness to ideas they've been pushing for years: having a real conversation about decriminalizing simple drug possession and ending the stigmatization of users. And with fatal overdoses in Quebec occurring at an unprecedented frequency, those advocates say decision makers need to finally listen up. "Frankly, we feel abandoned. We don't feel heard or taken seriously. We get the feeling they view us like children," said Rivest. "We like to say in French, rien sur nous sans nous, So nothing for us without us. We are part of the solution because we are the users. We know the problem." 'We shame them every day' As far as fatal drug overdoses are concerned, 2025 is not off to an encouraging start: 153 deaths between Jan. 1 and March 31, according to the province's public health institute, the Institut national de santé publique du Québec (INSPQ). In 2024, Quebec recorded 645 confirmed or suspected fatal overdoses, by far the highest total ever recorded in the province. The numbers have been trending upwards over the last decade. That same year, B.C. Premier David Eby rolled back the province's historic decriminalization project and recriminalized drug use in public spaces after facing intense scrutiny. Governments dealing with a toxic drug problem often appear to be trying to walk a fine line: getting people with drug addictions the help they need while not angering the broader public. "While we are caring and compassionate for those struggling with addiction, we do not accept street disorder that makes communities feel unsafe," B.C's premier said at the time. Last month, when the Coalition Avenir Québec government tabled Bill 103 — which would prohibit supervised drug consumption sites from being located within 150 metres of a school or daycare — Social Services Minister Lionel Carmant had a similar message. "The overdose crisis is at the heart of our concerns," Carmant said. "But we also have the responsibility to ensure that these places are safe for everyone." If Bill 103 becomes law, Maison Benoît Labre, a facility with a safe drug consumption site located about 143 metres away from a school, would eventually need the move. Andréane Desilets, the executive director there, said Bill 103 and the controversy that's followed Maison Benoît Labre has taken a toll on staff and clients. "A lot of people are hurt. A lot of people feel ashamed," said Desilets. "Because this is what we do, right? We shame them. We shame them every day with these laws. We exclude them from being a part of our community because we failed to provide acceptable support for them." Desilets says she understands concerns about Maison Benoît Labre, but adds that the conversation could use some reframing: more of a community perspective and less of an "us and them" attitude. "What should be very scary is the fact that people are dying on the streets and we're not doing anything," she said. "If we just continue on with this vision that it's a personal problem or an individual problem, then we will not get better and will not see any action and will not see numbers that are going down, only going up." Quebec has 14 supervised drug consumption sites. If Bill 103 is adopted, Maison Benoît Labre is one of two sites that would need to move. The other one is in Gatineau. Maison Benoît Labre has said moving the centre, which is currently seven metres too close to a school at the moment, would cost about $6.6 million. Quebec's plan for drug overdoses Quebec's Health Ministry says dealing with drug overdoses in the province is a priority, but it's also become increasingly challenging. "The situation is changing rapidly and is made more complicated by the fact that there are numerous substances contributing to the overdoses," wrote spokesperson Marie-Christine Patry in a statement. "The illicit market is evolving rapidly, with drug contaminations that are not just limited to opioids." The Health Ministry says it's putting a lot of effort into flattening the overdose curve, pointing to its 14 safe consumption sites and 34 drug verification sites, the widespread availability of naloxone in pharmacies and recent ad campaigns. WATCH | Quebec government tries to raise awareness about overdoses: It also highlighted the province's 2022-25 strategy for overdoses, which focuses on seven areas: Raising awareness. Prevention and harm reduction. Public policy. Monitoring the issue. Research and training. Addiction treatment. Pain management. Overdose deaths in Quebec are on the rise, and the problem could get worse When asked about the province's plan, Desilets stressed the need to invest "massively" in prevention, but she also paused to reflect about how complex the drug overdose problem is. "You know, it's never this one solution, right?" she said, before bringing up a broader but, according to her, necessary approach. "We need to rethink how we see people that are using .... We have to address the fact, that maybe, just maybe, having safer substances going on the streets instead of letting criminal organizations create stronger and stronger and stronger substances." 'It's hell out there' For many observers, providing safe supply of drugs goes hand in hand with decriminalizing simple possession. Sarah Larney, a researcher and associate professor at the Université de Montréal with an expertise in drug-related harm, is favourable to the idea, but she acknowledges it can be a tough sell to the general public. She said the pilot project in B.C. and its failures didn't help. "It's really unfortunate," Larney said. "How do you move that needle to make that a conversation that can even be had in a way that is productive?" When asked about decriminalization, Montreal police Chief Fady Dagher said it's not a "miracle solution" and was a failure in B.C. "Decriminalization, when you think of it, it's not a bad option, it's not a bad orientation, but the system has to follow," Dagher told CBC Radio Noon host Shawn Apel. "The problem is you decriminalize but nobody's taking over. The health system is not there to do the follow-up and the partners are not there to do the follow-up." A spokesperson for Health Canada told CBC News that B.C. remains "the only jurisdiction that has been granted a time-limited exemption related to personal possession of small amounts of certain illegal substances" and it does not have any other similar requests. "As the first exemption of its kind in Canada, there was always an understanding that all levels of government, partners and stakeholders would need to work together to closely monitor impacts in British Columbia, learn from the implementation and make adjustments as needed," the statement reads. For the Quebec government, decriminalization is a non-starter. IA spokesperson for the province's Justice Ministry said the risks associated with opioid consumption are significant, "so are the implications of a decision" on decriminalization. "For now, we're focused on doing everything possible to accompany people in the most humane way possible," said spokesperson Cathy Chenard. WATCH | How to use naloxone to help someone: How to administer naloxone if you witness an overdose 2 years ago Duration 2:28 Larney says tackling the toxic drug crisis requires several layers of intervention, such as decriminalization, addressing the housing crisis and supplementing people's income. "It's quite radical, I'll admit that," she said. "But everything else we've tried doesn't work and I'm not sure that continuing down this path is going to work either." The Quebec government's current path involves likely adopting Bill 103 and restricting where safe drug consumption sites can be located. Desilets, the executive director for Maison Benoît Labre, says the proposed legislation "will not have any impact on what's going on."
CBC
5 hours ago
- CBC
Federal court rules Health Canada decision to block experiential psilocybin training was unreasonable
Social Sharing The Federal Court of Appeal has ruled that Health Canada's refusal to allow exemptions for health-care workers to use psilocybin as part of their experiential training was unreasonable. Wednesday's decision was the result of an appeal of a 2022 judicial review application in a case involving 96 health-care practitioners who sought an exemption to legally use dried hallucinogenic mushrooms as part of what is known as experiential training. The initial application for exemption was filed under the name of Jeff Toth, a Nova Scotia nurse practitioner. Health Canada's refusal of the health-care workers' requests for exemptions has been sent back to Health Minister Marjorie Michel for redetermination. The mushrooms, commonly called magic mushrooms, contain psychoactive substances that are only legal for use in Canada if an exemption is granted under the Controlled Drugs and Substances Act (CDSA). Such exemptions are reserved for psilocybin-assisted psychotherapy, which involves medically supervised consumption of the substance for the treatment of serious medical conditions including end-of-life distress or treatment-resistant depression. Late Wednesday, the federal court ruled that Health Canada's reasons for refusing to grant exemptions to the 96 health workers training to administer psilocybin were too arbitrary. Refusal of exemptions harms patients: advocate John Gilchrist, communications director for TheraPsil, a Canadian non-profit organization that advocates for legal access to psychedelic therapy, was "elated" with this week's decision, which he called a "very long time coming." Gilchrist hopes this leads the current health minister to open up access to therapies by training more professionals who can help treat patients with debilitating migraines or depression. He says Health Canada's refusal to grant the exemptions is "harming health-care professionals and, very importantly, patients who are the most vulnerable in Canada." The Federal Court of Appeal's decision noted that Health Canada changed its position on psilocybin exemptions between 2020 and 2022 with no clear explanation. In 2020, then Health Minister Patty Hajdu granted exemptions to 19 health-care practitioners. This was reversed in 2022 under Carolyn Bennett, the then minister of mental health and addictions and the associate minister of health. "Health Canada is not aware of peer-reviewed clinical evidence to demonstrate that health-care professionals need to take a psychedelic drug in order to appreciate what the patient experiences," the ministry is quoted as saying in the federal court decision this week. But Federal Court of Appeal Justice Douglas Rennie wrote in his decision Wednesday that "nearly identical exemption requests" were granted in one case and denied arbitrarily in the other. "The Minister can't make such a significant and abrupt shift without explanation," he wrote. WATCH | Psychotherapist explains what a medical magic mushroom trip will look like: What a magic mushroom trip will look like for medical participants 1 year ago Duration 1:32 Health Canada has approved a study with 20 Londoners who suffer from PTSD to experience therapy under the influence of psilocybin, the active ingredient in psychedelic mushrooms. Psychotherapist Jared Dalton will oversee the therapy. He explains how it will work. Wins will open access to treatments: lawyer Ottawa lawyer Nicholas Pope says this is the latest in legal wins that will help open up access to psychedelic treatments. Pope, lawyer for the appellants, said the health-care workers were approved in 2020, then denied based on a lack of scientific evidence of efficacy. "Health Canada didn't demand that level of evidence in 2020 and now is demanding it," he said. In May 2024, a Calgary man named Jody Lance who suffers debilitating cluster headaches was the first to win a Federal Court battle forcing Health Canada to reconsider his bid for legal access to psilocybin to treat his extreme pain. His case was withdrawn after he got approval for an exemption this year. Requests to access controlled substances in special medical circumstances are filed through Health Canada's Special Access Program (SAP). Lance's initial application under the SAP to help treat his pain was denied due to lack of research into the efficacy of psilocybin to treat cluster headaches. Canadians have had limited legal access to psilocybin under the SAP since 2022. Health Canada approved 56 SAP requests in 2022, 106 in 2023 and 85 as of October 2024.
