The British Columbia government has reinstated funding for a vital medication for nine-year-old Charleigh Pollock, who suffers from a rare neurodegenerative condition known as Batten disease. Charleigh is currently the only person in all of British Columbia that is diagnosed with this rare illness. Across Canada, it only impacts an estimated 20 people.
The decision to restore funding comes after Charleigh’s family expressed significant distress over the government’s earlier choice to cut off financial support for her treatment with Brineura. The province’s Health Ministry had determined that an expert committee found Brineura no longer effective in slowing the progression of Charleigh’s disease. Health care providers, even those who are Batten disease experts in the United States, questioned this finding. In Charleigh’s case, they criticized the criteria that Health Canada used…
Brineura is necessary to treat the symptoms of Batten disease. This rare condition leads to irreversible neurological deterioration and the treatment is estimated to cost almost $1 million per year. Charleigh’s mom, Jori Fales, took to Facebook to share her heartbreak. She shared a video in which she said she was feeling “disgusted” and “heartbroken” by the painful funding cut.
In response to the public outcry and the concerns raised by medical experts, Health Minister Josie Osborne announced that funding for Brineura would be reinstated. This coverage will be active for as long as Charleigh’s treating physician and her family feel it is warranted.
“I spoke to Charleigh’s family earlier this evening. I confirmed to them that I have reinstated Charleigh’s Brineura coverage and that coverage will be available to them for as long as the treating physician and the family deem it appropriate.” – Josie Osborne
The reinstatement of this funding brings to attention a bigger discussion about who makes decisions about our healthcare. For his part, Premier David Eby admitted that a lack of consensus about treatment options is leading to significant confusion and fear in the community.
The Pollock family’s challenges highlight the difficult trade-offs that shape healthcare funding for Americans with rare diseases. Charleigh is a little warrior battling Batten disease each day. Her family is still hopeful that Brineura will provide her with the life-sustaining support she requires.
