Charleigh Pollock is a 9-year-old girl who suffers from neuronal ceroid lipofuscinosis type 2– a rare, terminal genetic disorder. For the last six years, the B.C. government has covered the costs of her life-saving treatment.
On Wednesday, it was announced that her funding would be cut.
AN EXPENSIVE TREATMENT
The treatment for Pollock’s condition– which is known as CLN2 or Batten disease– is a fluid infusion to her brain, called Brineura.
CLN2 causes multiple daily seizures, leading to brain damage. The treatment slows the progression of the disorder, but it is extremely costly. For just one year of infusions, it costs $1 million.
The B.C. government announced back in 2019 that it would cover the costs of Pollock’s Brineura treatment, although it is now being pulled. She is the only person in B.C. who suffers from CLN2, and it additionally has no cure.
PULLED FUNDING
Health Minister Josie Osborne said in her Wednesday statement that the medication’s costs are unrelated to the recommendation to cease coverage, which comes from medical experts. Although “expensive drugs for rare disease add a layer of complexity to decision-making,” said Osborne, it is not part of Pollock’s reasoning for her Brineura funding stopping.
At a certain point in CLN2, Brineura no longer has an effect on the patient– it is not slowed anymore. This occurs once the patient’s motor and language functions have progressively declined.
Pollock’s condition has reportedly reached that point, meeting the criteria for Brineura discontinuation.
The decision was made by a committee of independent experts, using Canada Drug Agency’s provided clinical criteria to assess the situation, as part of B.C.’s Expensive Drugs for Rare Diseases Program.
Pollock’s mother, Jori Fales, has said this decision goes against her daughter’s best interests. She adds that her daughter has been thriving on the treatment.
She said in a Facebook post that, “We are heartbroken. We are angry. We are devastated.”
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