Disgraceful behavior of health committee who cruelly banned dying girl, 10, from taking only meds that were helping her

Daily Mail​

06-08-2025

A disgraced health committee is facing backlash after 10 members resigned to protest a little girl with a rare disease being supplied with her vital medications.
The scandal unfolded in British Columbia, Canada, in recent months after Charleigh Pollock, a 10-year-old girl living with terminal Batten disease, began taking a medication named Brineura.
The medication does not cure Batten disease, a rare childhood condition affecting the nervous system, but slows its progression and prevents seizures and other severe side effects.
Charleigh's family and doctors said that her condition visibly improved while taking the drug, and she was able to finally enjoy her childhood by being able to play outside and go back to school.
But in June, Canada 's Health Minister Josie Osborne severed her family's funding for the medication as she cited 'no clinical evidence' that Brineura actually helped.
The decision sparked outrage as Charleigh's family and doctors said they could clearly see her improvement, with the public even circulating a petition that gained thousands of signatures.
The public pressure led Osborne to reverse her decision in July - a move that pleased almost all, except for British Columbia's expensive drugs for rare diseases (EDRD) committee.
Ten members of the committee, who are anonymous medical professionals, have now resigned in protest to Osborne restarting Charleigh's medication as they claim the minister 'politically interfered' with her care, reports the National Post.
The young girl's case has made national headlines in Canada amid scrutiny on its healthcare industry at large, also including controversies surrounding the nation's rapid expansion of euthanasia.
Many criticized Osborne even after she U-turned on Charleigh's care, claiming she acted only out of political pressure.
When her medication funding was stopped, Charleigh's family and friends launched a GoFundMe as it was the only way to help her receive the only drug that helped.
The fundraiser, which topped $72,000 CAD at the time of writing, said that she desperately needs Brineura 'to keep her alive and have quality of life.'
Batten disease is a rare condition that tragically usually only affects children, causing a myriad of health problems in the nervous system including seizures, neurological disorders, loss of motor skills and weight loss.
The terminal disease often means children diagnosed with the condition only live into their early 20s, and Charleigh's fundraiser notes that the money will eventually go toward 'end of life care in the future.'
Charleigh is the only child in British Columbia with Batten disease, and the fundraiser says that while Brineura does not cure her, it 'keeps her seizure-free and full of joy.'
'It is giving Charleigh more time, more stability, quality of life and more memories with the people who love her,' her family wrote.
The Daily Mail has contacted the EDRD board for comment.
Amid outrage over the EDRD board's handling of her care, British Columbia Premier David Eby said that he is now considering overhauling the drug panel entirely.
Eby told CTV News that he was dissatisfied with the board's callous approach to the situation, and said he did not like that the committee members are anonymous.
'We need to make sure that it works in a way that it's the experts that are making those decisions, and that is taking place in a way that's transparent and understandable to the public,' he said.
'It did not work that way in the Charleigh case. We had two groups of experts fighting it out. One very publicly. One a secret committee within the ministry of health, speaking only through politicians. That doesn't work.'
'I am supportive of the health minister's decision to not let this child get caught between a battle between two experts, and I hope that the experts who are on the committee and who have left the committee are willing to work with us to identify a structure that's going to work for them.'