While B.C. ALS patients are pleased about recent provincial announcements regarding expanded drug coverage, and a new ALS centre of excellence, they still think the province is lagging behind others in its care for sufferers of the neuro-degenerative disease.
Pitt Meadows’ Rob MacLean and his wife, Traci, travelled to a new ALS centre in Calgary on Friday (Aug. 21) to discover whether Rob is eligible to start taking Radicava, also known as edaravone, with his current clinical trial.
On Wednesday (Aug. 19) the drug was approved for coverage by the B.C. Ministry of Health. In one clinical trial, edaravone has helped slow the worsening of the affliction (also known as Lou Gehrig’s disease) in a select ALS patient sub-population.
The MacLeans were hoping it might help Rob.
The couple have been travelling to Montreal for most of Rob’s treatment up until this trip, so recent news about the joint announcement by the Ministry of Health and the ALS Society of B.C. surrounding a future ALS centre of excellence in Vancouver, is of great interest to them.
The province’s current ALS headquarters is a room at GF Strong Rehabilitation Centre.
“We were there last week for an appointment,” Traci said.
“It’s not the nicest spot to go to, and they don’t have any fulltime neurologists dedicated to the ALS centre.”
It is generally agreed upon by ALS advocates across B.C. that quality of care in the province has slumped since Dr. Andrew Eisen, a renowned ALS physician/ scientist, retired in 2005.
At a press conference in June announcing developments towards a new ALS centre of excellence, ALS Society of B.C. president Donna Bartell pointed out the current clinic is being served by four part-time neurologists.
“While they supply good clinical care, they have not been able to maintain the prior international stature that the clinic previously enjoyed,” she said.“Nor have they been able to continue the clinical trials and clinical research, and this has left the ALS community with little hope.”
North Vancouver lawyer Greg Gowe found out he had ALS in May 2019.
Since his diagnosis at the age of 48, he has been battling the disease, as well as fighting for better care for the 480 British Columbians who share his predicament.
“We’re always far behind,” Gowe said. “We’re the only large province that doesn’t offer clinical trial. Comparatively, we’re just at the back of the pack.”
He used the recent drug coverage announcement as an example.
“Learning B.C. would cover Radicava was welcome. But, the facts are that this approval came 22 months after Health Canada approved Radicava’s use in Canada, and B.C .was the third to last province to announce that it would cover the drug, and it waited for four months after the cost negotiations with the drug manufacturer had concluded,” Gowe said.
He noted Quebec made the announcement one week after the negotiations concluded.
With life expectancy ranging from two to five years for the majority of ALS sufferers, patience is not always an option.
“These timelines simply do not fit with the ALS clock.”
Gowe is also lobbying for a better space for ALS patients to be treated.
“Right now the ALS clinic for B.C. is in the basement of the GF Strong Rehabilitation building,” he said, “which is this dreary, rabbit warren set of rooms in the basement.”
Gowe, who currently travels to Montreal for his treatment as well, pointed to the Djavad Mowafaghian Centre for Brain Health at the University of British Columbia as a much better location.
“The [Multiple sclerosis] clinic is there, Huntington’s Disease is there, as is Alzheimers,” he said, noting he would like to see ALS patients getting treated there, too.
“It’s emotionally upsetting to go to the bowels of GF Strong, it’s a terrible environment.”
The ALS Society of B.C. was bequeathed $1 million recently, and the province has agreed to match that money, which will be put towards a new ALS centre of excellence.
Gowe said that the funding is a great start. But it still leaves a fairly wide gap, as the centre of excellent will cost approximately $5 million to set up.
“There’s a $3 million delta and it’s on the shoulders of the very small, under-resourced ALS society to fundraise,” he said.
Gowe would like to see the province immediately fund the $3 million, move the clinic over to UBC, get the full-time director, and start offering clinical trials.
“I want B.C. to be a leader in ALS care, and not a lagger,” he said.
Gowe has joined a host other Canadians who suffer from ALS in advocating for better care across the country.
The organization, which goes by ALS Action Canada, has become very active on Twitter.
ALS Action is a Canadian patient-led initiative to improve access to promising therapies for those living with ALS today.
It's time for action on #ALS. Join and support our fight.
— ALS Action Canada (@ALSAction) April 23, 2020
“We are inspired by the incredible advocacy in the U.S. that’s arisen in the last three years,” Gowe said. “And we’re looking to finally see meaningful action in Canada on ALS.
“None of us may live to see the fruits of this, but I truly believe the ALS landscape in Canada will never be the same.”
Though Gowe paints a bleak picture of care in B.C., the province does provide a fair bit of services to ALS patients through various programs, including: the provincial respiratory outreach program, the technology for independent living program, the communication for youth and adults program, and the choice in support of independent living program.”
Executive director of the ALS society of B.C., Wendy Toyer, said the province is moving in the right direction.
“This is the first time in British Columbia that the province has covered the cost of any drugs prescribed for ALS,” she said. “So that is a step forward.”
Toyer also said, the province has been an eager partner with them on making a new centre of excellence a reality.
“We were very fortunate to come into a very large bequest,” Toyer said. “So the board of directors looked to see what we could do better.
“We took that million dollars and put it into an investment fund to raise some interest, and started to have some conversations with the province to see if they would least match the charity’s million, so that we could look into hiring a full-time dedicated ALS clinician scientist.”
She said the province got on board, and announced in June they would match the million dollars.
ALS Society of B.C. has already enlisted the help of UBC to recruit for the position as head of the centre.
“That person would be funded to conduct clinical trials, with that funding coming from that initial $2 million,” Toyer said.
“In the bigger picture, the goal is to raise $5.5 million, because then we could establish an ALS chair, which is an endowed chair, so that would mean the disbursements every year would be about $230,000, which would cover the costs for the clinician scientist; so for now and forever, there would be no fundraising needed to pay for that person.”
A meeting to determine a timeframe for the incoming clinician/ scientist is scheduled for the week of Sept. 16, Toyer said, and an announcement will follow, once they are able to do so.
“We totally understand 100 per cent that people living with ALS do not have the luxury of time,” she said.
“ALS doesn’t go away, so we can’t stop working. But I’m extremely encouraged and thankful for the support we’re getting from the province, and also from our donors.”