A 10-point plan to convince the NDP government to fund Orkambi to treat cystic fibrosis

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      There are many positive things to say about Health Minister Adrian Dix. 

      He's exceptionally intelligent, well-read, and has an impressive work ethic.

      Dix is also an outstanding constituency politician. This has been shown in his successful efforts to prevent local schools such as Gladstone secondary, Sir Guy Carleton elementary, and Graham Bruce elementary from being closed.

      In his early days as an MLA, Dix was an unbelievably effective critic of the Ministry of Children and Family Development. His dogged work on this file led to the appointment of B.C.'s first representative for children and youth, Mary Ellen Turpel-Lafond.

      Turpel-Lafond's advocacy, in turn, led to the Vancouver Foundation investing substantial time and money into improving the lives of young people aging out of care.

      This was the subject of this week's cover story in the Georgia Straight.

      Dix also has an idealistic side. That was apparent when he ran a clean and positive campaign as NDP leader against Christy Clark during the 2013 election.

      And Dix was far ahead of many of his caucus colleagues in hiring staff of different ethnic backgrounds and in reaching out to different communities.

      This laid a key building block for the party's success in the 2017 provincial election.

      But like all of us, Dix also has some shortcomings.

      He's not the best listener. He can be quite dogmatic. And his deep-seated dislike of pharmaceutical company rip-offs can make him less sympathetic than some other politicians to patients seeking access to prescription drugs that show potential in improving their lives.

      This has created a painful conundrum for families of those with the most common underlying cause of cystic fibrosis.

      UVic student Lilia Zaharieva feels that her dreams are being crushed by the NDP government's refusal to fund Orkambi to treat cystic fibrosis.

      Genetic disease crushes dreams

      Cystic fibrosis is a devastating disease that attacks internal organs, leading to severe respiratory and digestive problems.

      Many politicians don't realize it's the most common inherited fatal disease among Caucasians.

      About 150 young people in our province have two copies of the genetic F508del mutation, which is the most common factor underlying cystic fibrosis. 

      The average life expectancy of someone with this disease is 37.

      Those who have it sometimes say they have difficulty making long-term plans. Their dreams are crushed with the knowledge that they will face repeated hospital visits and a steady deterioration in lung capacity.

      Health Canada has approved a very expensive drug, Orkambi, to treat people with this mutation.

      Medical experts on cystic fibrosis support the use of this drug, and it's being made available to patients in many countries to delay the effects of the disease.

      "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 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." 

      Advocates of the drug, including B.C. families whose children have been part of clinical trials, say this medication has the potential to turn cystic fibrosis into a far more manageable chronic disease.

      These clinical trials have demonstrated astonishing short-term results.

      This was the topic of a column of mine earlier this week following a demonstration that these families held at the B.C. legislature.

      Health Minister Adrian Dix has held the line on funding a drug that's seen as a lifeline by some with cystic fibosis.

      Government balks at price of medication

      The manufacturer of Orkambi, Vertex Pharmaceuticals, wants to charge about $250,000 per year per patient.

      Dix is refusing to negotiate with the company or meet with the scientists who developed the drug.

      In defence of this position, Dix is citing a report by the Canadian Agency for Drugs and Technologies in Health, which recommended that provinces not fund the medication.

      This occurred even though the agency's report report acknowledged that Orkambi "was associated with a lower rate of pulmonary exacerbations compared with placebo after 24 weeks of treatment".

      Families have been left in the lurch.

      The cystic fibrosis community is relatively small in B.C. It doesn't have the organizing power of groups advocating on behalf of patients with much more common diseases, such as cancer or heart disease.

      With that in mind, I've decided to offer a 10-point plan for them to keep the pressure on. (See below.) Perhaps these measures could convince the NDP government to fund this drug and extend the lives of those with the double mutation associated with most cases of cystic fibrosis.

      But before getting to the 10-point plan, these families must face the possibility that they won't make progress with Dix.

      His mind appears to be made up. He's likely convinced himself that he's right.

      Here's another troubling point for the families to consider. Dix is seen by some of his colleagues in cabinet as the smartest guy in the room.

      Finance Minister Carole James is not likely to override him and provide the $35 million each year that this drug will cost.

      Families can reach out to her but they shouldn't be under the impression that she'll change Dix's mind on this issue.

      Premier John Horgan is also unlikely to want to take on his strong-willed health minister.

      The same can be said for the minister of mental health and addictions, Judy Darcy, who's been close to Dix over the years.

      The premier's chief of staff, Geoff Meggs, is the master of realpolitik within this inner sanctum of the NDP government.

      Perhaps he can be persuaded that punishing cystic fibrosis patients is too politically costly, given the NDP's relative weakness in the legislature.

      Meggs is one of the few people whom Dix will genuinely listen to and whose advice he might follow. It's something that B.C.'s cystic fibrosis community should keep in mind.

      In the meantime, here are some things that families of cystic fibrosis patients might want to consider to push Meggs in this direction.

      B.C. Liberal leadership candidate Andrew Wilkinson has a medical degree as well as a law degree.

      1. Approach B.C. Liberal leadership candidates

      It might be somewhat sickening for some families enduring cystic fibrosis to get their hands dirty in the B.C. Liberal leadership race. But when your kid's life is on the line, the enemy of your opponent can turn out to be a useful ally.

      One of the leadership candidates, Andrew Wilkinson has a medical degree. He should be presented with evidence about the drug's efficacy.

      Similarly, families with cystic fibrosis should reach out to the other candidates: Michael Lee, Todd Stone, Sam Sullivan, and Dianne Watts. They're desperately looking for friends these days.

      If any of these candidates were to call for public funding of Orkambi, it would increase pressure on Dix to do the same, particularly if this eventually became B.C. Liberal policy.

      The late great Rafe Mair employed this tactic when trying to stop Alcan's Kemano Completion Project.

      The then leader of the opposition, Gordon Campbell, came out against it. Not long afterward, the NDP government buckled.


      2. Demonstrate outside B.C. Liberal leadership debates

      Families with cystic fibrosis should attend B.C. Liberal leadership debates and carry placards outside. Articulate young people should be present to share their stories. This would capture media attention and help educate political journalists about this issue.

      Former health minister George Abbott has retained the respect of many British Columbians after leaving provincial politics.
      Stephen Hui

      3.  Reach out to former health ministers

      For all of its shortcomings, the former B.C. Liberal government had some fairly enlightened health ministers. Colin Hansen, George Abbott, Kevin Falcon, and Terry Lake never batted an eye over funding expensive drugs for patients with HIV/AIDS.

      All four of them are intelligent and all demonstrated compassion at different times when they held the health portfolio.

      If presented with the evidence of Orkambi's efficacy, perhaps they would sign a joint letter urging Dix to fund the drug. This would generate media attention and embolden members of the B.C. Liberal caucus to embrace this idea. 

      Green MLAs Adam Olsen, Andrew Weaver, and Sonia Furstenau might be persuaded to speak up on behalf of patients with cystic fibrosis.

      4. Target messages at three Green MLAs

      B.C. Green Leader Andrew Weaver is an intellectually curious man. Now that the legislative session is over, he might have the time to review the medical literature on Orkambi.

      His two colleagues in caucus, Adam Olsen and Sonia Furstenau, seem like sensible, caring politicians. They should also be approached.

      To date, families with cystic fibrosis have concentrated their efforts on Dix and the media. It's time to escalate pressure on other players in the political firmament, including Green MLAs.

      Scheduling personal visits by families with cystic fibrosis at a constituency office could do wonders in gaining their support, particularly if these family members live in the area represented by the Green MLA.

      If the NDP inner sanctum begins to realize that Dix is going to be hammered on this issue repeatedly in question period next year, it might lead the government to reverse its position.

      5. Start preparing recall campaigns against select NDP MLAs

      Under B.C.'s Recall and Initiative Act, it's not possible to recall an MLA until 18 months have elapsed after an election. This means an application to recall an MLA cannot be filed until November 2018.

      But there's nothing stopping families with cystic fibrosis from beginning an educational blitz about their plight in specific constituencies.

      They could set up tables in shopping malls, community centres, churches, and other busy locations on weekends and start talking to people in two targeted constituencies: Vancouver-Kingsway and Maple Ridge-Mission.

      They could prepare the groundwork for a recall against Dix in Vancouver-Kingsway. It likely wouldn't succeed but it would generate a fair amount of media coverage.

      Then the families could target a second NDP MLA, ideally in a Lower Mainland constituency, which is why I recommend Maple Ridge-Mission.

      It's home to many young families who can identify with the plight of parents who have to worry about their kids' future.

      Maple Ridge-Mission is represented by a rookie NDP MLA, Bob D'Eith, and the party only won the seat by 325 votes. And it's within easy driving distance from Global B.C.'s headquarters in Burnaby, guaranteeing media attention.

      Could Jobs Minister Bruce Ralston break the impasse between cystic fibrosis patients and Health Minister Adrian Dix?
      Charlie Smith

      6. Enlist Jobs, Trade and Technology Minister Bruce Ralston

      The recommendations above fall into the "sticks" camp. But there are also need to be some carrots extended to get Orkambi funded.

      Jobs, Trade and Technology Minister Bruce Ralston's constituency of Surrey-Whalley is home to Innovation Boulevard, which is a centre for medical research.

      It's jointly supported by the City of Surrey, Fraser Health, and Simon Fraser University and has attracted researchers from other academic institutions, including UBC.

      Surrey Memorial Hospital is a key component and the goal is to attract investment and jobs from companies involved in medical research.

      Dix won't speak to Orkambi's manufacturer, Vertex Pharmaceuticals, but maybe Ralston will.

      The minister and his deputy, Faizal Mihlar, could cobble together a proposal to the company that would lead the way to the NDP government funding Orkambi for cystic fibrosis patients.

      Perhaps Vertex Pharmaceuticals could be persuaded to set up an office in Surrey, fund a research chair at UBC or SFU, and make use of local researchers for a major project.

      UBC's department of medicine already has researchers investigating cystic fibrosis: Dr. Bradley Quon and Dr. Andrew Sandford.

      In the meantime, the Canadian dollar is very low compared to the U.S. greenback, which makes Surrey an appealing location for American biotech companies.

      Innovation Boulevard is already well-served by rapid transit and it's only going to get better when three light-rail lines are built in the city.

      Imagine an announcement with Ralston, Dix, perhaps the premier, family members of those with cystic fibrosis, and Vertex Pharmaceuticals, celebrating new investments in Surrey.

      This could be combined with a good-news story about the province offering life-extending treatments to young British Columbians. It's a win-win for any politician.

      With enough political will, this could happen. But it will require families coping with cystic fibrosis to focus some attention on educating Ralston and Mihlar, who might not know anything about their plight.

      SFU vice president of research and international, Joy Johnson, has focused a great deal of attention on building up the university's capacity in the health sciences.

      7. Educate SFU officials about Orkambi

      SFU has made great strides under president Andrew Petter and vice president of research Joy Johnson to become a major Canadian innovation hub.

      Part of that has involved an expansion of research in health sciences. It's led to new initiatives investigating autism and other medical conditions.

      The new dean of health sciences at SFU, Tania Bubela, has an extensive understanding of genetics and molecular biology. Keep in mind that cystic fibrosis is a genetic disease.

      Families of young people with CF should make efforts educate Petter and other top SFU officials. Let them know about the possibilities that an agreement with Vertex Pharmaceuticals could present to them as they try to turn SFU into a major centre for health research.

      Liberal MP Joyce Murray once died her hair read to honour Eva Markvoort, who fought a very public battle against cystic fibrosis.

      8. Persuade a medical expert to attest to Orkambi's efficacy on video

      UVic student Lilia Zaharieva has made heroic efforts to bring the plight of cystic fibrosis patients to public attention.

      But what's needed is more medical muscle in this fight over the airwaves. TV newscasts thrive on video and it's not always easy to schedule interviews with busy physicians on short notice.

      Families of those with cystic fibrosis need to find a B.C. medical expert on cystic fibrosis to speak on video for about three minutes about the impact that Orkambi is having on one of his or her patients.

      This video should be uploaded onto YouTube, Facebook, and Vimeo and made available to any local media outlet that's interested in running it on newscasts.

      It doesn't need Spielberglike production values. Just a short commentary outside B.C. Children's Hospital or some other health-care facility would do the trick.

      Don Davies (right) is the federal NDP health critic and a close political ally of Adrian Dix.
      Stephen Hui

      9. Lean on Vancouver Kingsway MP Don Davies

      Don Davies is the federal NDP health critic and he represents many of the same people who live in Dix's provincial constituency of Vancouver-Kingsway.

      If Davies is getting bombarded with messages and starts worrying about his own re-election in 2019, this could have an impact on Dix and other provincial New Democrats.

      Davies needs to know that the provincial health minister's stance on Orkambi could cost him support in what might be a tough re-election fight.

      If CKNW Radio's Drex is looking for a new cause to latch onto...well, there's always cystic fibrosis.

      10. Get patients on radio talk shows

      Programs hosted by CKNW's Jon McComb, Simi Sara, Drex Wilcomes, and Lynda Steele offer tremendous platforms for people to tell their stories.

      The same can be said for programs on CBC Radio, Co-Op Radio, Spice Radio, Fairchild, AM 1320, Red FM, C-Fax, CHNL, and other stations.

      Government media relations people pay attention to what's said on these shows.

      Someone in the cystic fibrosis community should figure out who the producers are, which staff have taken a key interest in medical issues, and get someone as articulate as Zaharieva to be interviewed as often as possible.

      Finally, make the public aware of those who've perished from cystic fibrosis in the past during these interviews.

      Talk about the amazing Eva Markvoort, who died on March 27, 2010, at the age of 25 after waging a very public fight against the disease. Commemorate this day with a public event in her hometown of New Wesminster.

      It's worth remembering Eva's final words in her blog post. Let them inspire those who don't want other young people to endure the same miserable fate.

      "I'm not managing, not managing at all," Eva wrote wrote. "I'm drowning in the medications. I can't breathe. Every hour. Once an hour, I can't breathe. Something has to change."

      Yes indeed, something does have to change. 

      You can see part of Eva's story in the trailer below for the documentary 65_RedRoses. The film was directed by Philip Lyall and Nimisha Mukerji.

      Watch the trailer for 65_RedRoses about Eva Markvoort.