In Kelowna West by-election B.C. Greens should make lots of noise about NDP refusal to fund cystic fibrosis drug

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      Over the past week, I've written two columns on a drug called Orkambi.

      It's a very expensive medication that's shown great promise in treating cystic fibrosis.

      About 150 British Columbians have two copies of the genetic F508del mutation, which brings on this devastating lung and digestive disease. They're the only ones with cystic fibrosis who stand to benefit from this drug.

      Those afflicted with this condition have an average life expectancy of 37.

      They often die from respiratory failure if they don't receive lung transplants.

      "A 2017 study demonstrated that Orkambi can reduce that rate of progression by 42 percent," wrote the chief scientific officer of Cystic Fibrosis Canada, Dr. John Wallenburg, in a recent commentary in the Times Colonist. "Compare that with your mortgage interest. Would a 42 per cent drop in the interest rate make a difference? And that’s just where you live—for people with CF, it’s their life." 

      Despite this data, Health Minister Adrian Dix refuses to fund the drug, which is available to patients in Europe and the United States.

      Dix won't even meet with the company or speak to the scientists who developed the treatment.

      In the meantime, it's been approved by Health Canada.

      Health Minister Adrian Dix doesn't think the B.C. government should be funding an expensive drug that Health Canada has approved as a treatment for cystic fibrosis.
      Carlito Pablo

      Orkambi is being listed by private insurers in the United States and by public insurers in Europe

      The first leader of the federal NDP, Tommy Douglas, once said: "I came to believe that health services ought not to have a price tag on them and that people should be able to get whatever health services they required irrespective of their individual capacity to pay."

      Dix and the premier clearly don't agree with that sentiment when it comes to young people with the most common underlying cause of cystic fibrosis.

      That rankles not only the families of those enduring this miserable disease, it also disturbs some who voted NDP because they've been inspired by the values articulated by Douglas.

      It's worth noting that the manufacturer, Boston-based Vertex Pharmaceuticals, jacked up the price of this life-extending medication earlier this year.

      This occurred after it had already come under criticism for how it priced the drug.

      In the company's defence, a Vertex Pharmaceuticals spokesperson told the Boston Globe in 2015 that it had lost money in 25 of its 26 years of existence and that it had invested billions developing its medications.

      Dix's mind is made up. He's not prepared to spend money on a drug that he feels is overpriced and has limited effectiveness. He's dismissed those who support the treatment as playing games.

      That presents a political opportunity for the B.C. Greens as they approach a by-election in Kelowna West to fill the seat vacated by former premier Christy Clark.

      Weaver could fill the political void

      The B.C. Green candidate is Robert Stupka, a professional engineer and house designer.

      He's running against New Democrat Shelley Cook and Quails' Gate winery owner and former B.C Liberal MLA Ben Stewart.

      Kelowna West is one of the safest B.C. Liberal seats in the province, with Clark taking nearly 60 percent of the votes in May.

      The Greens came a distant third with just 13.5 percent of the vote in May, compared to the nearly 25 percent that Cook attracted for the NDP.

      Were the Greens to turn those numbers around and come second—or do something entirely unexpected and win the seat—it could transform the political landscape in B.C.

      The B.C. Greens would be seen as the party with momentum. It would provide an enormous boost to the federal party as it approaches the 2019 general election.

      Robert Stupka, an engineer and passive-house designer, is the B.C. Green candidate in Kelowna West.

      In October the Greens showed remarkable strength when they took the three top spots in the recent Vancouver school board election.

      Leader Andrew Weaver's long-standing concerns about climate change might even find an audience in Kelowna West after a summer of brutal forest fires and flooding in the Okanagan and other parts of B.C.

      In the past the B.C. Greens have done well with higher-income voters who are concerned about a warming planet. And there's no shortage of wealthy residents in Kelowna West.

      Kelowna West is not exactly a hotbed of union activism, either. Progressives who are unaffiliated with organized labour are more likely to vote Green than those with ties to unions.

      By-elections are funny things: sometimes the turnout is extremely low, which can result in big surprises.

      Here's where the plight of young cystic fibrosis patients could come into play.

      Should the B.C. Greens focus a lot of energy on funding of Orkambi for the 150 patients who benefit from this drug, Weaver would win a great deal of support of the cystic fibrosis community across the country.

      This is especially so if the B.C. Greens made this a cornerstone issue that sets them apart from the B.C. Liberal and the NDP candidates.

      It might lead to more donations pouring into the B.C. Greens to try to win the seat in Kelowna West.

      Not only that, it would likely result in the B.C. Greens having more volunteers ready to knock on doors to help Stupka try to pull off an upset.

      Families who are living with cystic fibrosis could seize the agenda by holding a demonstration carrying B.C Green placards as well as signs about the life-extending drug outside NDP candidate Cook's campaign office.

      This could be timed for maximum TV coverage.

      These demonstrators might also decide to dog the premier should he decide to visit the constituency during the by-election campaign.

      The families of cystic fibrosis patients appreciated it when Weaver and Green MLA Sonia Furstenau attended their demonstration outside the legislature last week.

      Furstenau has already tweeted her support for "better access to treatments that improve the quality of life for those living with CF".

      So there's already some goodwill between the cystic fibrosis community and the Greens.

      But simple gestures like Weaver and Furstenau showing up and listening and saying a few words at the legislature are not going to save the lives of the young people coping with this horrible disease.

      What's going to save their lives is for the leader of the B.C. Greens, Weaver, to review the evidence of the drug's efficacy and then issue a written public statement calling on it to be funded.

      Then Weaver has to follow up by making this a central issue in the upcoming by-election in Kelowna West.

      That's where the rubber will hit the road.

      Only actions like these will convince the NDP braintrust that they could pay a big political price for allowing their health minister to wage a one-man fight against a U.S.-based drug company.

      Only actions like these will have a hope of extending the lives of young people who've been dealt a terrible card in life.

      Only actions like these will truly reflect the values of Tommy Douglas and enable the B.C. Greens to be seen as the natural inheritor of his legacy in 21st-century British Columbia.

      Only actions like these will win over NDP-leaning voters who've been so deeply disappointed and even heartbroken by the stance of Health Minister Adrian Dix.