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 pedestrian looks over a vigil set up in Nelson on Friday to mark National Day of Remembrance and Action on Violence Against Women, which is held Dec. 6 to commemorate the 1989 École Polytechnique massacre that killed 14 women and injured 10 others. Photo: Tyler Harper
Demand for safe space increases in the fall at Nelson’s transition house

The eight-bed service for women and children fleeing domestic violence has been full since Oct. 1

COVID-19. (Image courtesy CDC)
81 new cases of COVID-19 detected in Interior Health Friday

One additional staff member at Kelowna long-term care home tests positive, no new deaths

Interior Health says Salmo’s COVID-19 cases have been contained. Photo: Wikimedia Commons
Interior Health: Salmo’s COVID-19 cases are contained

Every person who tested positive has recovered

The Village of Salmo has told Cody Puckett and Ashley Nelson that clearing land at this property doesn’t constitute building a property according to a bylaw. Photo: Submitted
Work in progress? Salmo family, village at odds over property construction

Cody Puckett says he’s being evicted from his own land, which the village disputes

Interior Health has set up a drive-thru COVID-19 testing site in Castlegar. Photo: Betsy Kline
Castlegar doctors and mayor urge residents to take COVID-19 seriously as cases are confirmed in the city

“Your doctors would like you to understand we do now have Covid cases here”

A snow moon rises over Mt. Cheam in Chilliwack on Feb. 8, 2020. Friday, Dec. 11, 2020 is Mountain Day. (Jenna Hauck/ Chilliwack Progress file)
Unofficial holidays: Here’s what people are celebrating for the week of Dec. 6 to 12

Mountain Day, Dewey Decimal System Day and Lard Day are all coming up this week

Demonstrators, organized by the Public Fishery Alliance, outside the downtown Vancouver offices of Fisheries and Oceans Canada July 6 demand the marking of all hatchery chinook to allow for a sustainable public fishery while wild stocks recover. (Public Fishery Alliance Facebook photo)
Angry B.C. anglers see petition tabled in House of Commons

Salmon fishers demand better access to the healthy stocks in the public fishery

(Hotel Zed/Flytographer)
B.C. hotel grants couple 18 years of free stays after making baby on Valentines Day

Hotel Zed has announced a Kelowna couple has received free Valentines Day stays for next 18 years

Cannabis bought in British Columbia (Ashley Wadhwani/Black Press Media)
Is it time to start thinking about greener ways to package cannabis?

Packaging suppliers are still figuring eco-friendly and affordable packaging options that fit the mandates of Cannabis Regulations

Farmers raise slogans during a protest on a highway at the Delhi-Haryana state border, India, Thursday, Dec. 3, 2020. Prime Minister Justin Trudeau rejected the diplomatic scolding Canada’s envoy to India received on Friday for his recent comments in support of protesting Indian farmers. Tens of thousands of farmers have descended upon the borders of New Delhi to protest new farming laws that they say will open them to corporate exploitation. THE CANADIAN PRESS/AP-Manish Swarup
Trudeau brushes off India’s criticism for standing with farmers in anti-Modi protests

The High Commission of India in Ottawa had no comment when contacted Friday

Montreal Alouettes’ Michael Sam is set to make his pro football debut as he warms up before the first half of a CFL game against the Ottawa Redblacks in Ottawa on Friday, Aug. 7, 2015. Sam became the first publicly gay player to be drafted in the NFL. He signed with the Montreal Alouettes after being released by St. Louis, but abruptly left after playing one game. THE CANADIAN PRESS/Justin Tang
Study finds Canada a ‘laggard’ on homophobia in sports

Among females, 44 per cent of Canadians who’ve come out to teammates reported being victimized

Nurse Kath Olmstead prepares a shot as the world’s biggest study of a possible COVID-19 vaccine, developed by the National Institutes of Health and Moderna Inc., gets underway Monday, July 27, 2020, in Binghamton, N.Y. U.S. biotech firm Moderna says its vaccine is showing signs of producing lasting immunity to COVID-19, and that it will have as many as many as 125 million doses available by the end of March. THE CANADIAN PRESS/AP-Hans Pennink
Canada orders more COVID vaccines, refines advice on first doses as cases reach 400K

Canada recorded its 300,000th case of COVID-19 on Nov. 16

Apartments are seen lit up in downtown Vancouver as people are encouraged to stay home during the global COVID-19 pandemic on Thursday, Dec. 3, 2020. British Columbia’s deputy provincial health officer says provincewide data show the most important area B.C. must tackle in its response to the COVID-19 pandemic is health inequity. THE CANADIAN PRESS/Marissa Tiel
Age, income among top factors affecting well-being during pandemic, B.C. survey shows

Among respondents earning $20,000 a year or less, more than 41 per cent reported concern about food insecurity

Information about the number of COVID-19 cases in Abbotsford and other municipalities poses a danger to the public, the Provincial Health Services Authority says. (Photo: Tyler Olsen/Abbotsford News)
More city-level COVID-19 data would jeopardize public health, B.C. provincial health agency says

Agency refuses to release weekly COVID-19 case counts, citing privacy and public health concerns

Most Read