A Vancouver Island family is battling to continue their daughter Charleigh Pollock's access to life-sustaining medication, Brineura, after the province announced it would stop funding the treatment. Charleigh's physician and the world's leading researcher in Batten Disease, Dr. Ineka Whiteman, argue that stopping Brineura will lead to Charleigh's rapid decline. The family is facing the emotional reality of their daughter's last infusions while seeking answers from the Ministry of Health.
A Vancouver Island family continues to fight for their daughter’s life-sustaining medication, Brineura. And each birthday that Charleigh Pollock gets to celebrate is a special one.
Jori Fales, Charleigh’s mother, says she can’t believe the Minister of Health has not reversed the decision. In the review of Brineura, the CDA says it “also involved 2 clinical specialists with experience in the diagnosis and management of neuronal ceroid lipofuscinosis type 2.” However it also suggests the criteria recommendations “can help support public drug plans and clinicians when they are implementing new treatments.”
While the Agency says it approved Charleigh’s treatment in 2019, which included criteria for discontinuing coverage of the treatment, it “was not part of the decision to end the funding of Brineura for Charleigh.
BRINEURA BATTEN DISEASE CHARLEIGH POLLOCK HEALTH FUNDING FAMILY FIGHT
Canada Latest News, Canada Headlines
Similar News:You can also read news stories similar to this one that we have collected from other news sources.
Vancouver Island Family Fights for Rare Drug Access for Terminally Ill DaughterA Vancouver Island family is facing a heartbreaking situation as the provincial government is set to end funding for a life-changing drug their terminally ill daughter depends on. Nine-year-old Charleigh Fales has a rare and fatal disorder and the drug, Brineura, has allowed her to thrive and live a fulfilling life. Without it, her condition will rapidly decline, leading to severe suffering and an earlier death. The family is appealing the decision, hoping to regain access to the drug and continue giving Charleigh the best possible quality of life.
Read more »
B.C. Family Fights to Keep Daughter Alive as Funding for Life-Sustaining Drug EndsA Vancouver Island family is pleading with the B.C. government to reverse its decision to stop funding a life-sustaining drug for their daughter, Charleigh, who suffers from a rare, fatal genetic disorder. Charleigh is the only child in the province diagnosed with the condition, and her parents say the drug is the only known treatment to slow her decline. Without the treatment, they fear Charleigh will die.
Read more »
B.C. Government Reviews Funding Decision for Terminally Ill Girl's TreatmentCharleigh, a nine-year-old girl with Batten disease in British Columbia, was recently informed that the provincial government would be withdrawing funding for her life-sustaining enzyme replacement treatment, Brineura. The decision sparked outrage and calls for a reversal as the treatment has significantly slowed down the progression of her disease. After initial resistance, the Health Minister ordered an urgent review of Charleigh's case, considering the potential quality-of-life benefits of continuing treatment.
Read more »
Minister of Health directs review of drug funding for Charleigh, a terminally ill 9-year-oldCharleigh's mom says she is hopeful but 'very cautious' after hearing B.C.'s Ministry of Health will review the funding of a drug for the terminally ill nine-year-old.
Read more »
Vancouver Mayor Ken Sim says Board of Metro Vancouver a ‘waste of time’'The way Metro is currently structured, I think it’s a complete waste of time. It’s terrible,' Vancouver Mayor Ken Sim told Global News Morning BC.
Read more »
Vancouver mayor to boycott Metro Vancouver meetings over ‘broken’ governanceOn Wednesday, the mayor of the largest city in the region announced he would boycott Metro Vancouver meetings.
Read more »