The growing number of B.C. families calling for the province to reconsider it’s decision not to cover a pricey treatment for some living with Parkinson’s Disease got some good news Tuesday morning.
The Ministry of Health said in a press release that they will be working with the Pacific Parkinson’s Research Centre to identify and prioritize patients for coverage of the medication Duodopa.
Health Minister Terry Lake said the research centre provided “strong testimonials” and “compelling accounts” of the drug improving symptoms and quality of life for some patients.
This news is what Jean Blake, CEO of Parkinson Society BC, has been waiting on for two years. The decision, Blake says, is life-changing for people with advanced Parkinson’s Disease.
“Parkinson’s is caused because the chemical dopamine that is produced in the brain is no longer being produced in the amounts our body needs to move,” Blake explained.
“So there is a synthetic drug called Duodopa in oral form and it’s great for a good part of the time a person has the disease. But Parkinson’s is progressive. There is no cure and we see as people have it for longer and longer periods of time, the oral medication is no longer effective.”
Blake says Duodopa is a “last resort for these people” and the only other option might be deep-brain stimulation, which is highly invasive and the province has a three year wait list for the surgery.
Duodopa is a gel-form combination of two medications, levodopa and carbidopa, and is administered directly to the small intestine through a surgically placed tube in the patient.
Health Canada approved the drug but B.C. had said they wouldn’t cover the cost of it, citing at the time a 2009 report from the Common Drug Review (CDR), which recommended the drug not be covered by participating PharmaCare programs. Among the two key reasons listed, Eric Lun, executive director of B.C.’s Drug Intelligence and Optimization Branch, said cost was a key factor.
“At the manufacturer’s list price of $166/day, the annual cost of therapy with Duodopa is over $60,000 per patient per year, compared with $3 per day or approximately $1,095 for the oral forms of the same drug,” Lun wrote in a Dec. 13, 2016 email.
“This represents a 5,379 per cent increase in the price of levodopa carbidopa from the oral form to the Duodopa form of the drug.”
Now going forward, the B.C. Health Ministry said physicians at the research centre will identify patients, who require Duodopa, and submit requests for PharmaCare coverage under the ministry’s Special Authority program. Coverage is expected to be provided to a small number of patients, who are deemed “clinically appropriate” and for those who will not benefit from other treatments like deep-brain stimulation.
“Through a rigorous drug review process, our goal under the PharmaCare program is to find the best treatment options while still maintaining value for dollar for British Columbians,” Lake said.
“We understand that quality of life for people with Parkinson’s disease can be a significant challenge. With introduction of coverage on an exceptional basis, we are offering an additional option for families facing this terrible disease.”
This recent decision could impact people like Barry Mansfield, who is one of about a dozen people in the province who aren’t responding to traditional treatments.
Mansfield says he takes upwards of 60 pills a day, but they aren’t effective anymore. Mansfield, who was once a paragliding, tennis playing, sailing, retired teacher from Hope, is now sometimes housebound, never knowing how his body will respond on any given day. His doctor has told him he needs Duodopa.
Now Mansfield may get his wish.
The ministry said they will be reviewing the use of deep-brain stimulation surgery for severe and complex Parkinson’s patients, compared to Duodopa. And to deal with the high cost of the drug, the Ministry of Health said they have been in discussions with AbbVie, the manufacturer of Duodopa, to see if there are ways to make the product more affordable.
According to the Parkinson’s Society B.C., 13,000 people in the province live with the condition.
~ with files from Nadia Stewart