346 THE ADVOCATE
VOL. 79 PART 3 MAY 2021
For people with ALS, Health Canada’s approvals of COVID-19 vaccines
prove that where there is the political will, approvals can be done in weeks.
As for ALS clinical trials—currently the main source of hope for ALS
patients—they are only in Alberta, Saskatchewan, Ontario, Quebec and
New Brunswick. British Columbia inexplicably does not offer them.
As a result, I have had to travel 22 times in two years to Montreal to participate
in clinical trials and to be overseen by a neurologist who is dedicated
to finding new ALS treatments. In contrast, British Columbia’s ALS
Clinic is a suite of dingy rooms in the basement of the ancient GF Strong
Rehabilitation Centre, has no full-time neurologist on staff and offers no trials.
It doesn’t even have a standalone website.
The difference in culture between the B.C. ALS clinic and the Montreal
ALS clinic is striking. In Montreal, the culture is “We will overturn any stone
to help you live.” In British Columbia, the attitude is “We are here to chart
your progress as you die.”
This brings me to the second reason I fight.
CANADA NEEDS TO STEP UP ITS GAME
ALS treatment and care in much of Canada, including British Columbia, are
failing the 3,000 families across the country currently living with this disease.
For example, British Columbia does not offer any clinical trials. And
the B.C. government invests zero dollars in ALS research.
I am determined to see this change, so that families who will unfortunately
come behind me will receive better support and treatment.
In Canada, ALS kills 1,000 Canadians (about 150 British Columbians)
every year. Another 1,000 Canadians are diagnosed with the disease each
year. Yet it is a disease that our provincial and federal governments essentially
ignore.
Consider these facts:
• It is not clear if any B.C. government has ever funded ALS
research.
• The federal government made a significant one-time investment
in ALS research in 2015, and it appears that it has made no meaningful
investment before or since then.
• The ALS Society of Canada oversees the ALS Research Program,
which is the only dedicated source of ALS research funding in
Canada. In 2020, the program had only $1.65 million to allocate to
researchers. Most of this funding was not contributed by any level
of government, but by people with ALS and those who love them,
through small, grassroots efforts like walks and bake sales.