opinion: people die while ontario stalls on cystic fibrosis drugs

christine elliott has a secret talent: tap dancing!ontario’s minister of health put on an impressive display of bobbing, weaving, sidestepping and waffling at queen’s park on wednesday, all to dance around the serious subject of life-saving drugs for canadians with cystic fibrosis.the princess of prevarication could not or would not directly answer questions from the press about government funding for drugs from vertex pharmaceutical that are life-savers for people with cf.despite the fact that all four drugs from vertex are being supplied to cf patients in 18 other countries around the world — despite the presence at queen’s park of worried-sick parents whose children are in declining health, and despite her firm promise to extend an official invitation to vertex to negotiate a portfolio deal — the minister has no answers for anyone.“i do intend to bring this forward,” was about as far as elliott would commit.

among the families who attended question period at queen’s park on wednesday were sasha haughian and her husband jamie larocque, parents of two young boys with cf; one of their children was picked for a vertex drug trial and is flourishing, and the other, who was not picked, is ailing.also in attendance were beth vanstone and her daughter madi; madi has cf and is thriving, because kathleen wynne and the ontario liberals funded the vertex drug she needs: kalydeco.it was beth and madi vanstone who had a meeting with christie elliott a few months ago, at which time the minister promised to get the ball rolling with vertex, saying to beth, “it’s a no-brainer.”back in 2014, when the liberals were in power and similarly balking at funding the drugs,  “christine elliott was saying how ridiculous it was that the drugs weren’t being funded,” said beth. “now she’s using all the same cop-outs the liberal government used at the time.”a press conference was held prior to question period so that reporters could hear from dr. elizabeth tullis, head of the toronto adult cystic fibrosis clinic at st. michael’s hospital.dr. tullis explained that in ontario there are about 1,000 cf patients, a third of all patients in canada. between 50 and 60 of her cf patients die every year, despite advances in treatment, so she knows better than most how crucial to patients these new drugs are.the fact that only one of vertex’s four drugs is funded here, she said, “is tragic, because these medications are life changing. they stabilize conditions. they actually make a very strong impact on how long you live.”some canadians can get these life-saving vertex drugs through private insurance (i.e. employee benefits), which, as dr. tullis pointed out, means we have a two-tiered system. that inequity will cost some canadians their lives.there is a registry that tracks every single person in this country with cystic fibrosis. the medical system knows exactly how many patients there are and exactly what happens to them — so every aspect of their treatment can be monitored. in other words, there’s nothing to lose with these vertex drugs.“this is the perfect situation,” said dr. tullis, “to use these medications appropriately.”all the more interesting, then, to watch elliott equivocate on these life-saving cf medications and hide behind various bureaucracies — she must know something those 18 other countries and canada’s leading cf physicians don’t know.that’s some fancy footwork, madam minister. too bad it’s the dance of death.