So – finally! – after Health Canada approved Kalydeco in November 2012 for use in Canada by CF patients aged six years and older who have the specific G551D mutation, it now appears this brilliant new medication will soon be available under provincial health plans to all Canadians with CF and the G551D mutation so badly in need of it. Well, that is, except those in Quebec. As usual, Quebec marches to a different drummer, so did not sign on to the pan-Canadian Pricing Alliance for an agreement in principle with Vertex Pharmaceuticals for a Canadian price Kalydeco.
This Quebec ideology – a matter of principle, apparently, so don’t look for a rational explanation – also includes the astonishing fact that this is now the only Canadian province that has not instituted testing of all newborns for the presence of CF. And that is baffling in the sense that there is clear and unequivocal evidence from countries that have implemented NB testing for CF many years ago that this actually saves the healthcare system money in the long run, in addition to making a significant difference to the quality of life and life expectancy of folks with CF. But I digress …
Looking at how a pan-Canadian deal for Kalydeco was eventually brought about – I can’t do much better than quoting the following from a Toronto Star article written by Rob Ferguson on June 2nd, when it referred to the Kalydeco situation as “a political football in recent months, with the cystic fibrosis community pressing the Ontario government for help and Liberal Leader Kathleen Wynne — now in the middle of an election — saying the province couldn’t afford it without a lower price from Vertex Pharma, the Boston-based maker of the drug.” As well, the article states that: “Provincial health ministers took the issue into their own hands in April, pledging to hold a meeting with Vertex instead of leaving the negotiations in the hands of bureaucrats. That meeting was held four weeks ago in Toronto.”
Clearly, this meeting proved to be the game changer, but it would be quite unfair to blame the civil servants tasked with reaching an agreement on price with Vertex for the more than two years it took to get to this point. As we stated here earlier, in a post titled Negotiating a Price for Kalydeco, on December 21, 2013: “… they are doing so with one arm tied behind their backs.” In the absence of any kind of political will to make this happen, they were simply not a position to move their bottom line unless they were told to do so from above.
With the federal refusal to renew the Health Canada Accord and the dismissal of the Canada Health Council by cutting off its funding in 2014, the pan-Canadian Pricing Alliance notwithstanding, there simply wasn’t the organizational clout in terms of a national mandate to make things happen. What was needed, clearly, would be some leadership at the political level to break the impasse in the negotiating process and bring a pricing agreement about.
We saw one effort to provide that kind of leadership in December last year, when Nova Scotia Health Minister Leo Glavine stood up for CF patients in his province to suggest their province would go at it alone in funding Kalydeco. We can only imagine the pressure he faced from the inside when he was forced to retreat from that position on behalf of the pan-Canadian Pricing Alliance.
In the end, it was Alberta’s Health Minister Fred Horne – representing the lead province in the pan-Canadian Pricing Alliance – who pushed the deal through with Vertex after he personally invited and met with Vertex representatives and some of his own colleagues in Toronto to get the matter settled for all of Canada.
Finally, we would be severely remiss if we didn’t recognize and congratulate the Vanstone family from Beeton, ON – Beth Vanstone and her 12-year old daughter Madi with CF – for their brave and persistent fight to keep Kalydeco in the media, and for confronting and keeping the pressure on local politicians to make the life-saving Kalydeco deal happen, and not only for them, but for all Canadians!