Rob and Traci MacLean pose with their daughters at the ALS walk at Merkely Park in Maple Ridge Saturday, June 20. (Special to THE NEWS)

Rob and Traci MacLean pose with their daughters at the ALS walk at Merkely Park in Maple Ridge Saturday, June 20. (Special to THE NEWS)

Patients celebrate B.C.’s ALS drug approval, but say more needs to be done

Patients, like Pitt Meadows’ Rob MacLean, still looking for better care from province

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.”

READ MORE: GoFundMe campaign raises close to $8,500 in two days for Pitt Meadows firefighter battling ALS

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.”

READ MORE: ALS supporters still walking to aid research and provide patient supports

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.

“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.”



ronan.p.odoherty@blackpress.ca

Like us on Facebook and follow us on Twitter

BC HealthDrugsPitt Meadows

Get local stories you won't find anywhere else right to your inbox.
Sign up here

Just Posted

A dose of COVID-19 vaccine is prepared at a vaccination clinic in Montreal’s Olympic Stadium on Tuesday, Feb. 23, 2021. THE CANADIAN PRESS/Paul Chiasson
39 new cases of COVID-19 in Interior Health region

The total number of cases in the region since the pandemic began is now at 7,334

The Skinny Genes Foundation is raising awareness and funds for a rare genetic disorder that claimed both his father and uncle.
NHL players, local businesses help Kootenay man raise funds and awareness for rare genetic disease

Signed NHL jerseys and local business donations up for auction in Skinny Genes Foundation fundraiser

The Columbia Basin Trust has announced grants for biodiversity initiatives. Photo: Submitted
Columbia Basin Trust announces ecosystem protection grants

Three projects are sharing a $1.35-million grant

Remi Drolet
Rossland skier competes at World Nordic ski championship

Remi Drolet was selected to Team Canada and will race at the 2021 FIS World Nordic Ski Championships

good lookin
West Kootenay pet shop owner petitions for end to pet mills

“Our companion animal laws are pretty lax right now, we need to bring more awareness to help SPCA”

Dr. Bonnie Henry leaves the podium after talking about the next steps in B.C.’s COVID-19 Immunization Plan during a press conference at Legislature in Victoria, B.C., on Friday, January 22, 2021. THE CANADIAN PRESS/Chad Hipolito
COVID: 589 new cases in B.C., and 7 new deaths

No new outbreaks being reported Feb. 26

Staff from the Marine Mammal Rescue Centre, passersby, RCMP and Nanaimo Fire Rescue carried a sick 300-kilogram steller sea lion up the steep bluff at Invermere Beach in north Nanaimo in an attempt to save the animal’s life Thursday. (Photo courtesy Marine Mammal Rescue Centre)
300-kilogram sea lion muscled up from B.C. beach in rescue attempt

Animal dies despite efforts of Nanaimo marine mammal rescue team, emergency personnel and bystanders

Gina Adams as she works on her latest piece titled ‘Undying Love’. (Submitted photo)
‘Toothless’ the kitty inspires B.C. wood carver to break out the chainsaw

Inspired by plight of a toothless cat, Gina Adams offers proceeds from her artwork to help animals

B.C. Finance Minister Selina Robinson presents bill to delay B.C.’s budget as late as April 30, and allow further spending before that, B.C. legislature, Dec. 8, 2020. (Hansard TV)
How big is B.C.’s COVID-19 deficit? We’ll find out April 20

More borrowing expected as pandemic enters second year

The first of 11 Dash 8 Q400 aircraft's have arrived in Abbotsford. Conair Group Inc. will soon transform them into firefighting airtankers. (Submitted)
Abbotsford’s Conair begins airtanker transformation

Aerial firefighting company creating Q400AT airtanker in advance of local forest fire season

Arrow Lakes Caribou Society said the new caribou pen near the Nakusp Hotsprings is close to completion. (Submitted)
Maternity caribou pen near Nakusp inches closer to fruition

While Nakusp recently approved the project’s lease, caribou captures are delayed due to COVID-19

The Canada Revenue Agency says there were 32 tax fraud convictions across the country between April 2019 and March 2020. (Pixabay)
Vancouver man sentenced to 29 months, fined $645K for tax evasion, forgery

Michael Sholz reportedly forged documents to support ineligible tax credits linked to homeownership

Then-Liberal leader Andrew Wilkinson looks on as MLA Shirley Bond answers questions during a press conference at Legislature in Victoria. (Chad Hipolito / THE CANADIAN PRESS)
B.C. Liberal party to choose next leader in February 2022

Candidates have until Nov. 30 to declare whether they are running

After nearly 10 months of investigations, Mounties have made an arrest in the tripping of an elderly woman in Burnaby this past April. (RCMP handout)
VIDEO: Mounties charge suspect for tripping elderly woman near Metrotown in April

32-year-old Hayun Song is accused of causing bodily harm to an 84-year-old using her walker

Most Read