A Vancouver Island woman living with advanced Parkinson’s disease is questioning why the B.C. government won’t fund a treatment that may improve her quality of life.
Paddi Wood was diagnosed with the degenerative neurological condition in 2008.
The 68-year-old Central Saanich woman has tried a number of treatments and drugs over the years, none of which have slowed her symptoms.
Approximately 13,300 British Columbians live with the disease, according to the Parkinson Society British Columbia.
Symptoms of the disease include tremors, loss of balance and difficulty with movements and fine motor skills.
The society’s CEO says about 12 people in the province are living with advanced Parkinson’s and are suffering with no relief in sight.
“They’re either in a very violent on-state, where their bodies are continually moving, or they’re in what we call an off-state, frozen, to the point where they sometimes can’t even breathe,” Jean Blake said.
A new treatment designed for people with advanced Parkinson’s has been approved by Health Canada.
DUODOPA consists of a medicinal gel that’s continuously delivered directly into the small intestine via a pump, reducing disabling motor symptoms of the disease.
“It is life-changing and in some cases life-saving for these people,” said Blake.
The drug isn’t cheap, coming at a cost of $60,000 a year. It’s covered in Ontario, Quebec, Alberta, Manitoba and the Yukon, but not in British Columbia.
Blake says the manufacturer has evidence showing that it does work for advanced patients.
“BC PharmaCare has a policy that the manufacturer must submit any new evidence to a national process called Common Drug Review and the manufacturer is not willing to do that because they have secured agreements with the five other jurisdictions,” Blake said.
That fact doesn’t sit well with Paddi.
“This DUODOPA therapy is essential for us, not to only affect our way of life, to keep us alive,” she said through tears. “I will die if I don’t get it and I don’t want to die yet.”
The Brentwood Bay woman has spent thousands of dollars on drugs and treatments, including chiropractor appointments, massage therapy, boxing and exercise classes.
Paddi says the disease has also taken a toll on all aspects of her well-being, she even gets mistaken as her husband’s mother.
“I’ve lost so much weight that I’m considered grossly malnourished,” she said. “We’ve tried all these damned other things that the government insist we try before they would approve the pump. We’ve tried them all, nothing works.”
Paddi’s husband says they’ve even considered selling their house to pay for the DUODOPA treatment, but that would only cover five years.
“Right now she really doesn’t have much of a life. It’s a full-time occupation for her and certainly for her caregiver as well,” Brian said. “Anything has to be better than this.”
Paddi says she will continue her fight in the hopes that the government will one day listen.
“How much longer can she go on living like this?” Brian said. “I’m not optimistic.”
