Langley resident Gail Guise is the only Parkinson’s patient in B.C. receiving a potentially life-altering treatment for advanced Parkinson’s, despite its having been available in Europe for over 10 years.
Guise is coming forward in the hope others with Parkinson's can also receive the Duodopa medicine and pump through health care in this province. Currently, the treatment, which costs more than $60,000, is not covered under B.C.'s health care system.
"It's made a huge difference in my quality of life," said Guise from her Murrayville condo. "This doesn't fix Parkinson’s, but because the medication goes directly into my brain in small doses every minute, it evens things out more, and I'm not tied to my watch."
A year ago, Guise had surgery to implant a tube directly into her small intestine. The tube is connected to a pump that she wears in a pack around her waist. The pump, much like an insulin pump, administers medication continuously. She also has the option to increase a dose if she is having a tremor or experiencing worsened symptoms.
Because the delivery of the drug is steady and regulated she can better manage her disease while experiencing an improved quality of life.
Before accessing this new treatment, Guise was required to take pills every three hours, but was still experiencing both tremors and dyskinesia, an involuntary muscle movement experienced by Parkinson’s patients, as her medication began to wear off.
But Duodopa is not covered under B.C.’s medical system.
"It costs $70,000 for the first year. Luckily for me, I still had BlueCross coverage from when I worked, so I could have it covered. Otherwise, I wouldn't have been able to do it either, said Guise“
There are about 75 people across Canada with the pump. Ontario, Quebec and Alberta healthcare cover the cost of the therapy.
"Because it only applies to people with advanced Parkinson's, it wouldn't be that many British Columbians who would need this pump, but for those who could benefit, it should be paid for through our health care," said Guise.
Jean Blake, CEO of the Parkinson's Society of B.C. said the government looked at the costs and, so far, has not agreed to pay for it.
"Doctors at the Movement Disorder clinic at the UBC Brain Research centre are assessing patients with Parkinson's disease and recommending therapy to the few who these therapy would benefit. They estimate 10 to 15 patients per year would qualify," said Blake. But if patients don't have private coverage, the therapy is not accessible to them, she said.
Parkinson’s disease is recognized as the second most common neurodegenerative illness in the world, after Alzheimer’s disease. Guise is one of 12,500 British Columbians to be diagnosed with Parkinson’s. Symptoms of the disease include tremors, loss of balance, and difficulty with movement and fine motor skills.
Guise was 49 years old when she was diagnosed with early-onset Parkinson's.
"At the time all I had was a tremor in my left hand. I used to run my dogs in agility so I thought it was something to do with that," she said. She used ski, do fly ball (dog agility exercise) and lived an active lifestyle.
"I had to quit my job. That was very difficult on me but then one day, the sun was shining on me through the window as I was reading a book and I thought, 'OK, I need to look at life differently. This isn't so bad.’”
Guise and her partner moved into the ground floor unit in Murrayville from a townhouse with lots of stairs.
She has stayed positive, still travels and, since using Duodopa, the tremors are much more short-lived, she said.
Recently she spoke about her pump and improved quality of life at the Victory Summit symposium in Richmond where 500 patients, caregivers and health professionals gathered.
"I want others to be able to benefit like I did so this is another way to lobby the government to make them aware, this can really help and it isn't going to cost them a huge amount," Guise said.