Greg Gowe, a Vancouver resident who was diagnosed with Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig鈥檚 disease, is calling upon the government to approve and establish clinical trials in B.C. and to improve the facilities in the province.
鈥淭his 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.,鈥� said Gowe, who was diagnosed with the degenerative, fatal disease in 2019.
鈥淚 was 48 when I was diagnosed; my kids were eight and six, I was a practicing lawyer at Telus. I coached my son鈥檚 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鈥檛 dress myself, I can鈥檛 bathe myself, I can鈥檛 go to the kitchen and get food for myself. I can鈥檛 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,鈥� said Gowe.
According to Gowe, the only available facility in the province is the the ALS clinic in Vancouver that is currently located in the 鈥渄reary basement of the GF Strong Rehabilitation Centre鈥� 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.
鈥淚t is terrible and they don鈥檛 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,鈥� 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 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鈥檚 case, he has had to travel out of the province 16 times already in the last 20 months.
鈥淚 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,鈥� 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.
鈥淲e have a website, we are on Twitter, Facebook. 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,鈥� said Gowe.
One such story featured on the group鈥檚 website is of Pat Caden, a military veteran and former North Peace smoke jumper. Black Press Media wrote about Caden鈥檚 struggles in December last year in 鈥淔undraising underway for former Smithers resident diagnosed with ALS鈥�, after Caden was diagnosed with the disease. Since his diagnosis, his 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.
READ MORE: Fundraising underway for former Smithers resident diagnosed with ALS
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 鈥渋t is what it is鈥�, explained 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 the e-petition initiated by Norman Macisaac, from Montreal. Masiaac 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.
鈥淭here is a global movement to end ALS and we need governments to get on board. 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,鈥� said Gowe, who continues to fight for better treatment options for himself and for others and hopes that the government takes steps to bring hope to those living with ALS.
Priyanka Ketkar
Multimedia journalist
priyanka.ketkar@ldnews.net
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