The killer in question is Pompe Disease, also known as "Glycogen storage disease type II". It has been found to affect somewhere in the range of 1 in 40,000 to 1 in 300,000 births. 4 Albertans have it - and are dying from it.
There is no cure for Pompe - not yet. However, just as with cancer, while there is no known CURE for the disease, there IS treatment - treatment approved by Health Canada which improves the quality of life in sufferers of the disease, and dramatically impacts the life expectancy of those treated.
In a recent study, 83 per cent of individuals treated with Myozyme were both alive and free of invasive ventilator support at 18 months of age. By comparison, only 2 per cent of individuals in an untreated historical group were even alive at 18 months.
The median age of death for those diagnosed at birth is 6 to 8 months; patients who go untreated rarely survive beyond the first year.
In 2006, Health Canada approved a drug called Myozyme for the treatment of Pompe disease. Less than a year later, the Canadian Common Drug Review issued their recommendations regarding public funding for Myozyme therapy. Their recommendation was to provide funding to treat a very small subset of Pompe patients (Infants less one year of age with Cardiomyopathy). The vast majority of Canadian Pompe sufferers, then, would have to privately fund their Myozyme treatments - treatments that extend and improve their lives, and without which they would most certainly die, likely in extreme pain. Treatments that cost $500,000 per year.
You read that right. $500,000 per year. And the CCDR has recommended that we, as Canadians, should not cover that medication, and leave those sufferers to face inevitable bankruptcy and just-as-inevitable painful death, when the money runs out.
Most of the European Union provides access to this medication for all Pompe sufferers in their countries. Yet here, in our "universal system", we have decided, to this point, to let the sufferers of this disease fend for themselves. We pay, as a society, BILLIONS every year to treat people who suffer from cancers brought on by their own lifestyle choices (lung cancer in smokers, cancer of the jaw or tongue in chewers, etc.) but won't pony up the cash to treat these people who were born with a terrible disease, through absolutely no fault of their own.
One brave young man afflicted with this disease is Trevor Pare, of Innisfail. Trevor was diagnosed as a baby, and his prognosis was not good. Defying the odds, Trevor is now 17 years old, with aspirations to attend university. He started feeling weakness in his limbs at age 14, and shortly after was put on a clinical trial for Myozyme. Although he is confined to a wheelchair, Trevor reports that he feels much better. Doctors have said that without the continued Myozyme treatments, Trevor will be dead in 3 to 6 months.
... tick, tick, tick ...
Trevor's clinical trial ends in May, and the drug is not covered by either the Federal or Provincial health departments. His family, therefore, is looking frantically for a way to afford $500,000-per-year medication, to keep their son alive. They may have to sell their personal belongings, or their home, to treat their son's illness.
... tick, tick, tick ...
Nation, we in this country make it own own personal point of pride to identify ourselves and our national character not by who we ARE, but rather by who were AREN'T. When people ask us what it is that differentiates us from our neighbours to the South, we hesitate, before proudly pointing to our Universal Healthcare System as proof positive that we are a caring and magnanimous society, which cares for every person within our borders. "No Canadian," we go on to say "would ever have to sell their house because their kid got sick!".
... tick, tick, tick ...
Trevor's clinical trial will be over in 10 weeks. From the moment he stops taking Myozyme, his doctors start the countdown to his death. There is no other treatment. The disease has one treatment, it costs $500,000 per year, and neither the provincial government nor the federal government have, thus far, been willing to admit that they are responsible for the cost. Both levels of government have told the Pare family that the other is to blame. And while they dicker about who needs to be picking up the tab, the clock is ticking.
... tick, tick, tick ...
A killer waits to snuff out this life, and so many others.
A delay in acting will cost lives.
Minister Liepert? Minister Clement? Are you willing to let Trevor die while you argue about jurisdiction?
We are watching. And the clock is still ticking.
... tick, tick, tick ...
For more information on Pompe Disease, please see:
I've met Trevor, and while I agree with your conclusion and the need to ensure Trevor gets the medication he needs, I disagree with how you simplify a much much more complicated issue. You used a "mainstream media" tactic to sensationalize and summarize an issue that you obviously do not fully understand. I'm disappointed ES.
Also, comparing a hostage taking to an illness is a large leap, and not an appropriate one.
Gov'ts do not sit back and simply make a decision to allow someone to die, to imply such undermines all governments.
Anon: Firstly, it was never my intention to suggest expertise where none was present. I’m no more familiar with this disease or issue than any other layperson with a few days of internet research under their belt.
Secondly, I made a conscious decision to present the item in that way to underscore the urgency of the issue, and the lack of MSM coverage. I felt strongly, and still do, that my usual calm and ironical presentation wouldn’t be appropriate for a literal life-and-death issue. Trevor’s family was desperate when this story was initially covered by a few of the MSM at the end of February, and now nearly 3 weeks later there has been no significant progress made (of which they’re aware) to ensure that when this young man’s current coverage runs out, he’ll continue to receive the medicine he needs to live.
His family, which contacted me and brought the story to my attention initially, is far too desperate for me to water down their message in the interests of one blogger’s thematic consistency.
I’m aware that this approach may have been a bit of a turn-off for my regular readers, and I apologize for disappointing you. I’ve been writing for the past few weeks about the things that politicians have to do in the next 4 years to avoid looking foolish – in being faced with the task of conveying the message that this young man’s future needed to be determined in the next 10 weeks, I may have cranked up the melodrama too far by way of overcompensation.
The seriousness of the situation, though, remains. It is NOT over-stating things to suggest that if a decision is not made in the next 10 weeks, Trevor may die, in part due to cross-jurisdictional bickering. I don’t believe for a second that Ron Liepert is going to sit in his office and decide to let Trevor die, and I regret it if my initial post seemed to suggest such. However, a failure on the part of Mr. Liepert’s department, or that of Tony Clement’s federal Health ministry, to act on this case specifically, will just as certainly lead to an unthinkable result.
No matter how I write that, or what the headline – it’s an appalling thought, and something that shouldn’t and can’t be allowed to happen. And on THAT, we can BOTH agree.
No hard feelings, I hope? ;-)
No hard feelings whatsoever. Thank you for that explanation and clarification.
I look forward to a post in the near future on a positive outcome to this situation...although on further thought, i would be even more satisfied if there was no major announcement that the funding for the medication was approved, this is not something that should be done for positive media attention, this is something that should be done because it is the right thing to do, period.
Anon: Couldn't agree more. Nothing would make me happier than to receive a private email from Trevor's family in a week or 2informing me that he received the help he needed, with no fanfare whatsoever.
And then, I will gleefully post the good news here, for the world to see.
Because although government shouldn't trumpet the fact that they're doing their job properly, if even one site in the blogosphere can talk about what the Alberta government is doing RIGHT once in a while, and not focus full-time on what they're doing WRONG - then I consider this space well-used.
Blogs are perfect platforms for emotional arguments - especially when, if at all possible, they can engage a few people to make a difference. I mean really, some people spend an awful lot of energy blogging about issues that mean nothing to anyone but themselves.
Matter of fact, if you have such a space, and you knew of such an issue and you didn't make use of it - what kind of person would that make you?
And to water down that particular message would be like to stand by and watch as the kid dies. Sometimes you have to get out there and take a stand or no one will notice. Stir up a controvesy - lord knows nothing ever gets done with out one. Every issue like this is complicated - doesn't mean that it isn't at least very important to some people.
I liked your post - it made me write my minister (still no response, btw). I think the only people that could legitimately complain about your hostage analogy would be actual hostage survivors - and even then I imagine they could relate that experience to this one.
First I would like to thank you ES
for talking about Trevor in your blog
every little bit helps in our fight to save his life. He is such an amazing person.
So far we do not have any good news.We will keep on trying with what ever means might help.
Post a Comment