As I read that Melissa Verleg is still being held in limbo regarding whether or not the provincial ministry will pay for her necessary medication (Orkambi) for CF, I am both saddened and angry. Saddened because I can’t even begin to imagine the emotional toll this is taking on Melissa and her family, and angry because the more I read about this situation, the more it seems to me that it is just another bureaucratic boondoggle but this time, one that is playing out with someone’s life. According to Provincial Health Minister Dix, the issue is twofold from their perspective …. 1) the cost, and 2) Dix claims that the drug has not been approved for use in Canada. So addressing the first issue regarding cost, which is specious at best, given that just recently the Ministry approved payment for Soliris for a young woman at a cost of $750,000 a year, whereas Melissa’s required medication would cost $250,000 a year, a third of the cost of the aforementioned drug so one can’t help but query why $250,000/year is cost prohibitive whereas $750,000 is not.
In regards to the second issue regarding Health Canada approval, a quick Google search indicates that Health Canada approved use of Orkambi in January 2016, the block however appears to be with something called the “Common Drug Review” which determines which drugs are or are not eligible for public funding in Canada, and apparently they have determined that Orkambi is not eligible based on their determination that it “failed to show any statistically significant or reliable improvements in weight gain, lung exacerbations, or quality of life.” Well I daresay, Melissa and her family would argue otherwise, as she has stated that with regular use of the medication the quality of her life has improved to the point that she is able to lead a normal life. So to use Dix’s words regarding approval of Soliris, if we review public funding eligibility on a “case by case” basis, this should be a no brainer! It works for Melissa!
Now the Ministry is saying that the manufacturer (Vertex) could resubmit for approval but also claims they have not done so to date. Who knows where the facts lie in all of that, it’s somewhat of a he said, she said, scenario. But what I do know is that according to Mitch Moneo, ED for PharmaCare in B.C. a “review process typically takes five to six months.” Melissa doesn’t have five to six months, her current supply of Orkambi will run out in January.
So the way I see it, the bureaucracy is playing with someone’s life, and that’s not OK. We are a society that can do so much better than this, and the Ministry needs to step up to the plate and fast track this for Melissa and her family. I can only hope they will, however my communications in this regard to both Minister of Health Dix and Premier Horgan have so far gone unanswered save for the usual “thanks for contacting us …..” auto reply, but that was more response than I got from our MLA.
So I am hoping others will join me in turning up the heat with our provincial government to go to bat for Melissa. She is emotionally and physically drained by this battle and needs us to advocate on her behalf.
Sandie Hoberg
Vernon