Shock, devastation, sadness and fear are some of the many emotions the family of Langford girl Charleigh Pollock have experienced in the 24 hours after they received the news the province is pulling funding for treatment of the nine-year-old乌鸦传媒檚 terminal illness.
乌鸦传媒淚t乌鸦传媒檚 a roller-coaster,乌鸦传媒� says mom Jori Fales, speaking to Goldstream Gazette June 19 from Victoria General Hospital, the day her daughter received her last province-funded infusion of the drug Brineura.
乌鸦传媒淭oday the feeling is anger.乌鸦传媒�
Pollock is the only child in B.C. living with the rare genetic disorder Batten disease. She has been receiving the bi-weekly enzyme replacement treatment, funded by the province for nearly six years, costing around $1 million a year.
The day before Pollock乌鸦传媒檚 last infusion treatment, the Ministry of Health said June 18 it would be standing by a decision made in February that the nine-year-old no longer meets the criteria to receive Brineura.
Fales says she only found out about the decision from her daughter乌鸦传媒檚 physician minutes before she received a flurry of messages from journalists, offering the family their condolences.
乌鸦传媒淚t's sad to know that there was already a press conference planned before the family was even informed 乌鸦传媒� it乌鸦传媒檚 all been very impersonal,乌鸦传媒� she said, adding that she has never spoken to anyone from the Ministry of Health, including Health Minister Josie Osborne.
Intended to slow the progression of the disease, Brineura has given Pollock a life free from daily seizures, says Fales.
However, a review by Canada乌鸦传媒檚 Drug Agency (CDA), found 乌鸦传媒渋nsufficient evidence乌鸦传媒� to make definitive conclusions about the potential benefits of the drug on quality of life, seizure control, and mortality outcomes.
The ministry has also made it clear Brineura is not an anti-seizure medication.
The CDA乌鸦传媒檚 review also found no new evidence that justified changing the discontinuation criteria for Brineura, first established in 2019 乌鸦传媒� something mom Fales has described as "outdated."
Ultimately, the Expensive Drugs for Rare Diseases expert committees found the nine-year-old乌鸦传媒檚 condition meets the discontinuation criteria.
乌鸦传媒淢eaning there was no evidence to support the ministry continuing to provide coverage for Brineura, given the advanced stage of Charleigh乌鸦传媒檚 condition,乌鸦传媒� said a statement by Osborne.
Fales says hearing the minister talk about her daughter乌鸦传媒檚 condition made her 乌鸦传媒渂lood boil.乌鸦传媒�
乌鸦传媒淚 need people to know she is not in an advanced state of her disease, and she is in a stabilized position due to her medication that she's been receiving,乌鸦传媒� she said. 乌鸦传媒淐harleigh hasn't had seizures in years.乌鸦传媒�
With her final dose of Brineura now complete, Pollock乌鸦传媒檚 future is uncertain, says Fales, who disagrees with the ministry that the drug is not effective in managing her daughter乌鸦传媒檚 seizures.
乌鸦传媒淯nfortunately, time will tell, and everyone is going to see exactly what's going to happen to Charleigh once this medication is removed,乌鸦传媒� said Fales. 乌鸦传媒淪he's being made an example, and it's unfortunate.乌鸦传媒�
She says the timeline for her daughter乌鸦传媒檚 life expectancy has now been 乌鸦传媒渆xceptionally speeded up.乌鸦传媒�
乌鸦传媒淎nd it wasn't even our choice,乌鸦传媒� says Fales, who believes Pollock乌鸦传媒檚 medical team should have been at the forefront of the decision-making process.
乌鸦传媒淭hey still recommend she continues to receive treatment.乌鸦传媒�
Following the news, the family has been met with a wave of support from the public. Hundreds of comments online from folks expressing disbelief at the ministry乌鸦传媒檚 decision.
The family of Oak Bay's Simon Hoskins, who lives with the rare progressive disease mucopolysaccharidosis (MPS) Type IV, has also spoken out in support.
Like Pollock, Hoskins receives province-funded treatment 乌鸦传媒� a synthetic enzyme infusion that helps slow the progression of his disease, allowing him 乌鸦传媒渢o retain the best quality of life possible.乌鸦传媒�
乌鸦传媒�(Charleigh) and her family deserve so much more, we are holding them close as the news hits so very hard today,乌鸦传媒� the Hoskins family wrote in an emotional Instagram post.
MLA for Courtenay乌鸦传媒揅omox and opposition critic for rural and seniors health Brennan Day has also slammed the province乌鸦传媒檚 decision, calling it 乌鸦传媒渕orally indefensible.乌鸦传媒�
乌鸦传媒淚t乌鸦传媒檚 appalling that this government believes recreational drug programs are a higher priority than giving a young girl a fighting chance,乌鸦传媒� he said in a statement, calling on the province to immediately reverse the decision.
The public support has brought some comfort to Pollock乌鸦传媒檚 family.
乌鸦传媒淲e're just very grateful for everyone's support and love, and they're very appreciated,乌鸦传媒� said Fales.
As for what乌鸦传媒檚 next for the family, Fales says they need time to process and accept what lies ahead.
乌鸦传媒淎nd we'll continue to make Charleigh our priority,乌鸦传媒� she said, explaining that her daughter has been shielded from what is happening.
乌鸦传媒淛ust like every day, she wakes up with a smile on her face and is a happy little girl 乌鸦传媒� today is no different.乌鸦传媒�
