A drug called Duodopa can be a life-changer for people with Parkinson’s disease. The problem is, it’s so expensive few patients in B.C. have access to it. As Nadia Stewart reports, Parkinson’s patients don’t understand why their government is leaving them to suffer.
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Another B.C. family is lending their voice to the growing number of calls for the province to reconsider it’s decision not to cover a treatment for some living with Parkinson’s Disease.
Barry Mansfield 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.
“If you said to me we’re gonna have lunch tomorrow at 6, I might not be ready until 10. I might not be ready for two days,” Mansfield said.
His doctor has told him he needs a drug called Duodopa. The patient needs to be hooked up to an insulin-pump-type machine and the drug would deliver a steady dose of levodopa and carbidopa into the person’s gut. While he likely won’t be returning to the healthy active lifestyle he once had, they believe the drug could significantly improve his mobility and quality of life.
Health Canada has approved the drug but B.C. won’t cover the cost of it, citing 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, has said cost is 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 December 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.”
Concerns were also raised about the quality of the two evaluated trials presented by the drug’s manufacturer, AbbVie.
Citing the Canadian Expert Drug Advisory Committee, Lun said the trials were “open label, of small size, had high proportions of withdrawals, and were in patient populations that did not represent those most likely to use Duodopa.”
AbbVie says it has done more research and new evidence points to the drug’s effectiveness. They also say Ontario, Manitoba, Quebec, Alberta and the Yukon cover the drug on a case-by-case basis; which frustrates Mansfield’s daughter Juli Oldham.
“There’s probably about 10 or 12 people in the province right now that could really benefit from this treatment that’s not available in B.C…. not covered currently by Pharmacare and it’s devastating. It’s scary,” Oldham said.
The province maintains that if AbbVie resubmits Duodopa for the Common Drug Review process, they will look at the new evidence and make a decision from there. Abbvie has not resubmitted for a review, saying it would rather work directly with each individual province.
AbbVie said they are “concerned about re-submitting to the Common Drug Review (CDR) as it could negatively affect the existing coverage in jurisdictions that have approved funding without a CDR resubmission.”
According to the Parkinson’s Society B.C., 13,000 people in the province live with the condition. Jean Blake, CEO of Parkinson’s Society BC, is hoping the province will look beyond the bureaucratic process and consider the day-to-day pain patients are in.
“It’s really heartbreaking to hear some of the stories when we know that the therapy is within reach,” she said.
Mansfield and his family remain hopeful the B.C. government will have a change of heart. His daughter says the family is running out of time and options.
“It’s horrifying to think that there’s something that would change his life for the better and we can’t provide that for him. It’s a desperate feeling.”
http://globalnews.ca/news/3220534/b-c-parkinsons-patients-want-funding-for-expensive-drug-to-improve-quality-of-life/
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