The Enlightened Savage

The Enlightened Savage

An attempt to make sense of politics and political happenings in Calgary, Alberta, Canada, and North America.

Tuesday, March 18, 2008

Known Killer Holds 4 Albertans Hostage - No Response From Gov't

Nation, there is a killer out there, who strikes without warning or provocation. As we speak, this killer is holding 4 Albertans hostage, and may at any time snuff out the candle of their existence. The killer in question has taken more lives than Robert Pickton ever dreamed of - most of them babies less than 8 months old. There is a way to keep this killer at bay - but the government has, to this point, refused to do so. And so 4 Alberta families wait, for their children to die.

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.

In Canada.

... 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!".

Think again.

... 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:

· International Pompe Association

· United Pompe Foundation

· Canadian Association of Pompe

Posted by Enlightened Savage at 9:53 AM 0 comments