We first talked about Trevor on March the 18th. It's been almost 3 weeks, and his clinical trial ends in approximately 7 weeks time. So let's see what has developed in the last 3 weeks...
Trevor and his family received a letter from the Honourable Ron Liepert, freshly-minted Minister of Health & Wellness for the province of Alberta, dated March 31st. In the letter, Minister Liepert indicates that his department is currently continuing to advance discussions regarding Myozyme coverage, and that the government continues to "review its policies".
Maybe it's just the jaded public servant in me, but it's hard to tell, in reading the letter, whether it's a form letter or not.
Nation, as we've established, I work for the provincial government. I *know* what "review its policies" means. It means we'll make a decision to decide to make a decision to form a committee to do research to recommend whether or not we should make a decision. It means months and years. Optimistic projections suggest that, without government intervention at the end of May, Trevor may have seen his last Christmas. Pessimistic projections suggest he's seen his (our) beloved Oilers play for the last time.
The annual cost of the Myozyme treatments that Trevor needs in order to live has ballooned to nearly $774,000. As the aspiring sports executive might point out himself, that's a little less than what the Toronto Maple Leafs paid left-winger Jiri Tlusty this year, to play 607 minutes of hockey over 56 games, score 16 points, and finish with a plus/minus of -9.
Jiri just turned 20, by the way. Trevor might not make it there.
Minister Liepert, for his part, says he's personally aware of the situation, and that his department is on the job.
Part of the problem comes in the form of the statement to the Sun by Health & Wellness spokesman Howard May, who said "... the government must wait until after the trial is complete before deciding on whether to continue funding it."
On the face of it, this is at the very least LOGICAL. The request has been made to the pharmaceutical company that produces this miracle drug to extend Trevor's trial. If they agree to do so, then THEY will pick up the cost of the drug - so, logically, for the government to come out and say "if they don't extend him, we'll pay for the drug" would be foolish... if the company were to read that, what do YOU think they'd do? That's right... end the trial, and take the government's money. Either way, Trevor would get his treatments, but this way, they'd get their $774,000 per year.
However... just because this is the logical statement to make publicly, does NOT mean that the Minister or one of his staff can't sit down with Trevor and his parents privately, behind closed doors, and tell them that in no way, shape or form will they allow Trevor's treatments to stop.
Instead, the department seems to be playing chicken with the drug company, having not bothered to tell the Pare family whether they intend to swerve.
Trevor's family, as you could imagine, is beside themselves. At this point, they have no idea whether they'll be selling their home in a month, to see if they can get enough Myozyme to help Trevor see another Christmas. And if anyone in Health & Wellness knows what's going to happen, they sure haven't bothered to tell the Pare family, even privately.
I don't for a second believe that Ron Liepert has decided to let Trevor Pare die. Ron doesn't have it in him. For that matter, I don't believe anybody in the department of Health & Wellness has gotten together in a conference room, and decided that the Pares should have to sell their home, declare bankruptcy, or watch their son suffer and die. That is not the calibre of individual who works in the Public Service of Alberta. The department simply doesn't want to publicly state their willingness to pay for the drug, because to do so would eliminate any imperative, moral or otherwise, for the drug company (Genzyme) to extend Trevor's trial period. Likewise, I firmly believe (a belief only - I have no knowledge whatsoever of the department's formal, off-the-record position on the matter) that IF Genzyme doesn't renew Trevor's drug trial, then Alberta Health & Wellness will step in and do the right thing.
In the meantime, though, Trevor's family stares at the clock, and waits for somebody in Edmonton or Massachusetts to decide their son's fate.
Ron - take time out of your day, give Trevor or his mother a call, and tell them that he's going to live, no matter whether it's on Genzyme's dime or Martha and Henry's. It'll be the best feeling you'll have for weeks - and doing it privately costs you nothing but a few minutes of your time.
Nation... my first post on this subject drew some harsh criticisms in regards to the tone and approach of the author. Rightly so. In my indignation over Trevor's case, I inadvertently took attention away FROM his case - and for that, I owe Trevor AND my devoted readers an apology.
I want it stated for the record that I have no vested interest in Trevor's case, and no exceptional knowledge of the issue. I don't work for Alberta Health & Wellness. I'm not a member of Trevor's family. I don't work for Genzyme. I'm not a doctor. Trevor contacted me after the initial post to thank me for bringing attention to his plight, and I've been in contact with he and his family several times since. The young man is bright, articulate, and isn't sitting at home feeling sorry for himself - he's considering his college options. He's going to be running the Edmonton Oilers some day - and then I can write blog posts about how "that jerk Pare should have gotten us some blueline help at the deadline". The issue first came to my attention through a friend, who is a relative of Trevor's.
All this is about is a young man with a great outlook on life, a great sense of humour, and a terrible disease needing help to give him a chance at a long and productive life. No matter where that help comes from - Genzyme, the government of Alberta, or the Feds - Trevor needs it. That's what is important, here. Not optics, or politics, or precedent, or cost - it's a young man's life.
How To Help
- Write to Genzyme and ask them to extend Trevor's clinical trial of Myozyme here.
- Write to Alberta Health & Wellness and ask them, as the taxpayer who earned the money in the first place, to cover Myozyme treatments at firstname.lastname@example.org
- Join Trevor's Facebook group - if and when the "search" function is working on FB again, I'll post the link.
- SPREAD THE WORD. The more that Genzyme and the government hear from people, the more likely they are to buckle. Sustained pressure from ticked-off fans brought a t.v. series back from cancellation (Jericho)... this is a young man's life.