Greg Gowe, a Vancouver resident who was diagnosed with Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig’s disease, is calling upon the government to approve and establish clinical trials in B.C. and to improve the facilities in the province.
“This is the time of unprecedented hope for people with ALS given that there are over 80 clinical trials going on worldwide. But the problem is, Canada and B.C. in particular is not doing anything to bring this hope to B.C.,” said Gowe, who was diagnosed with the degenerative, fatal disease in 2019.
“I was 48 when I was diagnosed; my kids were eight and six, I was a practicing lawyer at Telus. I coached my son’s baseball team, we camped as a family, we are part of a local ski club as a family; I was a very involved father and now 20 months later, I can barely walk, I use a walker and even that is difficult. I can’t dress myself, I can’t bathe myself, I can’t go to the kitchen and get food for myself. I can’t leave the house by myself. I have stopped working since last April. And you may hear it in my voice, but my speaking is becoming more and more strained and every day something continues to diminish in my body.”
According to Gowe, the only available facility in the province is the the ALS clinic in Vancouver that is currently located in the “dreary basement of the GF Strong Rehabilitation Centre” with no full time neurologist and no clinical trials offered. In highlighting this, Gowe is not just advocating for clinical trial options in the province but also an overall improvement in the facilities and options currently available in B.C. for the neurodegenerative disease.
“It is terrible and they don’t offer clinical trials in the province whereas Alberta, Ontario, Quebec and some of the small provinces all offer clinical trials. So right now clinical trials are the main source of hope for ALS,” he said, adding that clinical trials have already proven to work for some people with ALS such as Chris Snow, the assistant general manager of the Calgary Flames hockey team.
Because there are no clinical trials in B.C., anyone who wants to participate in one, has to travel out of the province and in Gowe’s case, he has had to travel out of the province 16 times already in the last 20 months.
“I have travelled to Montreal to participate in clinical trials and on some of those occassions, all they needed from me was a blood sample and a urnie sample. I flew across the country for a 10 minute appointment,” he said.
In the hopes of getting the stories of his and several other families affected by the disease heard, Gowe, along with a few others formed the group ALS Action Canada.
“We have a website, we are on Twitter, Facebook,” said Gowe. “We are running stories of Canadian families impacted by ALS and you know, many are from B.C. and all of us feel that the B.C. government is not serving the needs of the ALS community,”
One such story featured on the group’s website is of Pat Caden, a military veteran and former North Peace smoke jumper. Black Press Media wrote about Caden’s struggles in December last year in “Fundraising underway for former Smithers resident diagnosed with ALS,” after Caden was diagnosed with the disease.
Since his diagnosis, Caden’s friends and family have been raising money for him to get access to a stem cell treatment in Germany. The family has managed to raise $31, 270 so far on their GoFund Me page.
The ALS Action Canada group features and advocates for several such families through their website. The group has already sent two letters to the provincial government asking for clinical trials and other improvements, but the responses they got both the times was along the lines of “it is what it is,” said Gowe.
Several efforts are underway in Canada to get the government to speed up the approvals for new clinical trials and improving the treatment options for those diagnosed with the disease, including an e-petition initiated by Norman Macisaac, from Montreal. Macisaac has been living with ALS since 2014, has written books, is a staunch advocate for making better treatment options available for ALS in Canada, and started the petition that has now garnered 25,672 signatures.
“There is a global movement to end ALS and we need governments to get on board,” said Gowe. “That petition was asking the federal government, the health minister, to work to develop a pilot program with the provinces to reduce the delay in obtaining access to approved ALS treatments.”