B.C. Cuts Off Meds for Nine-Year-Old with Batten Disease: That's Wild 💀

The Situation

Alright, listen up, because this is kinda messed up. There's this disease called Batten disease - it's mega rare and hits kids hard. We're talkin' seizures, vision loss, and basically losing all your skills, no cap. It's a genetic thing, and it's neurodegenerative, which is just a fancy way of saying it's a major L for your brain.

So, this nine-year-old girl in B.C., Charleigh Pollock, has it. There's this drug called Brineura that can slow things down, but it costs, like, a million bucks a year. The B.C. government just said "nah" and cut off her coverage. They're saying a panel of experts decided it wasn't really working for her anymore. The government doesn't think the cut off had anything to do with the price tag.

But here's where it gets spicy. Charleigh's mom is fighting back, saying the drug *is* helping her daughter, and some other doctors agree. They're meeting with the health minister to try and get the decision reversed. Apparently, Brineura is supposed to be fire if you start taking it early, before things get too bad. The family's medical team believes the drug still provides benefits.

The Canada Drug Agency acknowledges that “evidence is limited regarding advanced disease and when to stop treatment". The Premier believes the decision should be made by medical experts. Even the people who make the drug are saying the treatment should be between a kid’s family and their healthcare providers.

It's a whole mess of opinions and super high stakes, and this family is caught in the middle. They're cautiously optimistic about the meeting.