Vancouver Island family heartbroken as B.C. stops funding $1M drug for girl with terminal condition

[Hoodat]

Vancouver Island family heartbroken as B.C. stops funding $1M drug for girl with terminal condition

9-year-old Charleigh Pollock has CLN2, or Batten disease, which causes multiple seizures daily

Lauren Vanderdeen  ·  CBC News · Posted: Jun 19, 2025 10:57 PM EDT


The provincial government began funding treatment for Charleigh Pollock in 2019, but now says she doesn't meet the criteria to
continue the treatment. (Trevor Pollock/Facebook)

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.  .  .  .

https://www.cbc.ca/news/canada/british-columbia/charleigh-pollock-batten-disease-funding-pulled-bc-1.7566373



If government will do this with your health care, they'll do it with your Social Security, too.  This is what happens when you allow government to replace you as the customer.

[Smokin Joe]

When the accountants control health care, the patient does not count, only the bottom line.

But I have to ask, why is this drug so expensive?

[mountaineer]

It appears to me from the Cleveland Clinic site that there really isn't much that can be done for this poor child. There's no real treatment. Brineura "slows down the progression of mobility symptoms, like the loss of the ability to crawl or walk (ambulation). However, it doesn’t slow down other symptoms."

[Smokin Joe]

A problem with really rare conditions is that the market is so small, there is little corporate push to find cures (if that can even be done).

Not like finding goop to grow hair back or remove wrinkles...

[mountaineer]

Exactly. Erectile dysfunction? Hair loss? Obesity? Big market for treatments.

Not so much these extremely rare conditions.