B.C. family battles government to get Parkinson’s drug covered

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Family battles the government to get Parkinson’s drug covered
WATCH: A B.C. family says the provincial government seems to be ignoring the latest studies about a drug used to treat people with advanced cases of Parkinson's. For more than a year they've been lobbying Victoria to cover the cost of that drug and say the government's decision not to fund the treatment is based on out-of-date research. Nadia Stewart reports – Dec 23, 2016

A B.C. family says the provincial government seems to be ignoring the latest studies about a drug used to treat people with advanced cases of Parkinson’s disease.

Paddi Woods was diagnosed with the disease in 2008. She says every day is worse than the one before.

“Hell, in a word. It’s like living in hell,” Wood said.

Over the last several years, Woods has been on a cocktail of pills and in and out of hospital.

“A couple of weeks ago, I had an experience where my whole chest had frozen. I was gasping for breath. It was terrifying. I was going in and out of consciousness,” she said.

Her daughter, Jenny, describes those episodes as “off periods” where her mom’s body freezes up.

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“She cannot walk, she cannot stand, she cannot breathe,” Jenny said.

Those who have the disease don’t have enough dopamine in their body. According to Parkinson’s Society B.C., 13,000 people in the province live with the condition, but for about a dozen of them — including Woods — they lose their ability to control their body’s movements.

“Mom’s movements, her legs and her arms go crazy and she cannot sit still. She and my dad will dance around the kitchen to combat the dyskinesia,” Jenny said.

For Woods and those like her, pills just don’t work anymore. Her doctor says she needs Duodopa. Hooked up to an insulin-pump-type machine, the drug would deliver a steady dose of levodopa and carbidopa.

Health Canada has approved the drug, but B.C. won’t cover the cost of it. Jenny said she has written every MLA in B.C., along with the premier and prime minister, lobbying them to get the ministry of health to reconsider its position.

“If this pump does not come to B.C. for these people, for my mom, then in my opinion they have failed and I will be ashamed to be from this province,” Jenny said.

Duodopa’s cost, effectiveness cited as reasons for rejection

On Dec. 13, Eric Lun,  executive director of B.C.’s Drug Intelligence and Optimization Branch, responded to Jenny Wood’s request for the province to reconsider its current position. Lun said Duodopa was examined by the Common Drug Review (CDR) in 2009. The recommendation then was for the drug to not be covered by participating PharmaCare programs. Among the two key reasons listed, one of them was the cost.

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“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. “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.”

Jean Blake, executive director of Parkinson’s Society B.C., said the province should reconsider its position based on new research currently available.

“We do have evidence that it will make an incredible difference on these few people’s lives,” Blake said, referencing a 2014 article published in the Lancet Neurology medical journal. According to Blake, the evidence presented in this article was compelling enough to convince Ontario, Quebec and Alberta to approve coverage of the drug on a case-by-case basis.

In an email to Global News, the ministry of health said Abbvie is welcome to “forward a resubmission for Duodopa to the CDR for additional review. At this time, the manufacturer has indicated to the province that they have new data but are not willing to resubmit Duodopa to the CDR.”

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Blake said the manufacturer is hesitant to resubmit, as it could impact coverage of the drug in other provinces.

“[Abbvie] has indicated they have done this new research and the benefits were of such a great magnitude, it was covered immediately in the U.S. We know it’s been covered in Europe for quite some time, as well,” Blake said. “The other five jurisdictions [in Canada] when the evidence was presented to them just said yes, it makes sense that this would be available to those few people who require it.”

However, Woods said this is about more than just compelling evidence.

“I want to know why the government thinks they have the right to make the decisions about whether we should live or die or whether we should have a life or not,” she said.

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