A Vancouver Island woman living with advanced Parkinson’s says she will continue to fight for a new treatment that has helped Canadians in other provinces, including an Edmonton man.
John Laidler says three years ago his Parkinson’s was so advanced that he could barely stand and even had to crawl to get around.
He credits DUODOPA, an insulin-based pump that injects a steady stream of levodopa and carbidopa into a person’s stomach, with changing his life.
“[It] allowed me to go shopping again and go for a walk without my legs giving out,” Laidler said
His family is just as pleased with the results.
“It was like a miracle, he just could walk, he could swing his arms back and forward,” John’s wife, Elaine Laidler, said. “It was a tear-jerker to see him do it.
The Edmonton man is among more than 100 people in Canada who are being treated with DUODOPA.
The medicine costs $60,000 a year and is covered in four provinces and a territory, not including British Columbia.
Paddi Wood who lives in Central Saanich says she wishes British Columbians would be given the same opportunity.
“It’s just that there is something that could make our life better and I don’t understand why we’re being denied it,” Wood said. “That’s not fair.”
The 68-year-old says she’s received an outpouring of support after she shared her story with CTV News last week.
“I’m hopeful when I read the letters from all my friends and all the people we know and all the people that we don’t even know who’ve written letters for us and people who’ve offered to pay for the drug for a year,” Wood said.
The B.C. woman says there’s no point going through the surgical procedure if she can only afford to have the pump in place for a limited time.
Wood also refuses to move to another province to receive the treatment.
“It’s just not fair to ask people [family] to do that when something is available here,” she said.
Wood has to set her alarm throughout the night to ensure that she takes her pills every two hours, which are digested at different speeds. It makes dyskinesia, or involuntary muscle movements, a daily battle.
“I wouldn’t wish this on my worst enemy,” Wood said. “I’m even scared to go out now because the little kids next door might see me and think I was really weird.”
DUODOPA was originally turned down by the Common Drug Review board because of cost and a lack of clinical evidence.
Health Canada approved the treatment following new research in 2014. It was enough to convince other provinces to start paying for it on a case-by-case basis.
Several healthcare professionals in B.C. recommend the treatment, including a researcher at UBC who calls it a “real game-changer.”
“It will keep people with advanced disease independent so that they can live at home and not have to be in a care facility, which is very expensive to the healthcare system as a whole,” Dr. Martin McKeown said.
There are currently 12 people in B.C. who are pushing to get the drug covered. They have written letters to MLA’s and Health Minister Terry Lake.
“I’m not complaining about the fact that I’m going to die, everybody is going to die, it’s the fact that my life could be better right now,” Wood said.
With files from CTV Vancouver Island's Chandler Grieve
