The British Columbia government has reversed its decision and restored funding for a nine-year-old girl with a rare neurodegenerative disease. Health Minister Josie Osborne announced the reinstatement of funding for the drug Brineura, which costs approximately $1 million annually.
Minister Osborne stated that her decision was influenced by a letter from Batten disease experts in the United States, who expressed a significant disagreement regarding the drug's effectiveness. She emphasized that healthcare professionals should be the primary decision-makers in such cases.
The minister confirmed to the girl's family that Brineura coverage would be available for as long as the treating physician and the family deemed it appropriate. Osborne also acknowledged that the girl and her family should not have to endure suffering due to the disagreement over the drug.
The government had previously cut off funding, citing an expert committee's determination that the drug was no longer slowing the progression of the girl's disease. Premier David Eby also expressed concern about the family's distress and the disagreement among medical experts. The girl is the only person in B.C. with the disease and one of about 20 in Canada.
5 Comments
Fuerza
This decision feels more about saving face for the government than about the health of the girl. We need integrity in our healthcare system.
Manolo Noriega
What kind of message does this send to other families with rare diseases? They might expect similar treatment without valid evidence.
Fuerza
This is a compassionate move by the government that acknowledges the family's struggle. Bravo for prioritizing the well-being of the child!
Ongania
Restoring funding for Brineura sets a dangerous precedent. What happens when other families demand funding for treatments with questionable efficacy?
ZmeeLove
Kudos to Minister Osborne for making the right call! We need leaders who are willing to uphold human rights and compassion over bureaucracy.