A local MP is issuing an urgent appeal to the province to restore funding for a drug that a Langford girl's family says has a profound affect on her quality of life.
"As you will be meeting tomorrow (July 4) with the family of Charleigh Pollock, the little girl tragically afflicted with CLN2 (Batten) disease, I am writing to express my support for the family's request that the province continue funding Charleigh's access to Brineura," Saanich-Gulf Islands MP Elizabeth May wrote in a letter to B.C. Health Minister Josie Osborne.
Charleigh's mother Jori Fales has continually argued that her daughter is still benefiting from the bi-weekly infusion treatment. But the province says Pollock鈥檚 motor-language skills have declined to a point where she now meets the discontinuation criteria.
After six years receiving Brineura, Pollock鈥檚 last infusion treatment was June 19 鈥� her next would have been July 3.
The treatment, which was funded by the province for nearly six years and cost around $1 million a year, slows the progression of the rare, ultimately fatal neurological disorder.
May says that Canada remains the only country with universal public health care without all prescription drugs covered within the health-care system. She points to numerous studies that have shown "that comprehensive pharmacare would save lives and avoid billions of dollars in costs driven by the high price of prescription drugs in Canada."
She said coverage is even more imperative for medications with smaller demand, such as Brineura, that help those with rare diseases.
"Big Pharma has no guardrails. It can charge whatever it wants for treatment and medication access. It can make obscene profits and exploit urgent, heartbreaking cases like Charleigh鈥檚 to build public pressure and compel governments to pay up. The irony is not lost on me: I am now assisting the industry in getting what it wants precisely because Charleigh鈥檚 need is so urgent," writes May in her letter to the minister.
In the letter, also sent to federal Health Minister Marjorie Michel, the Green Party leader calls on the government to negotiate price and bulk purchasing from a position of strength.
"This letter is both a plea to help this little girl, Charleigh, immediately, and a call to tackle the larger issue head-on. We must act now to ensure our health-care system is not bankrupted by Big Pharma鈥檚 unchecked greed."