Good morning! It’s James Keller in Calgary.
We’ll be taking some time off for the holidays. Look for the next edition of the newsletter in the first week of January. But before that, here’s your last Western Canada newsletter as we say goodbye to a difficult year.
An Edmonton family waiting for a rare and astronomically expensive drug got some good news this past week when Health Canada approved the medicine for use in this country. But the federal approval is just the start, as provincial governments now must decide whether to cover the drug, Zolgensma, and its $2.8-million price tag.
Reign Johnston has Type 1 spinal muscular atrophy, or SMA, a rare neurological disease that affects one out of 11,000 babies. Now 22 months old, Reign has already endured endured multiple surgeries and procedures and is under 24-hour care.
For his mother, Alex Johnston, the reality of the drug’s cost – believed to be the most expensive in the world – is overwhelming.
“I just don’t understand how a one-time dose of a drug can cost $3-million,” says Ms. Johnston, who is 19 years old and cares for Reign full-time. “I understand that there is research that goes into it and everything. But, the whole point of doing all that research is to help people, right?”
Zolgensma is a one-time infusion that replaces the missing or defective survival motor neuron 1 (SMN1) gene, potentially reversing, though not curing, the progression of the disease. It was already approved in the U.S. before Health Canada gave its blessing.
Now, the drug goes to the Common Drug Review board of the Canadian Agency for Drugs and Technologies in Health (CADTH), a non-profit organization that advises provincial governments about coverage.
The board will make a recommendation as early as January, and then the provinces will make their decisions. That final step that can take six to seven months.
That is time that Reign and many other babies do not have. FDA regulations do not allow Zolgensma to be administered for babies over two years of age, and a similar deadline is expected in Canada. Reign turns two on March 7 of next year, though the Alberta government says it is also working on a solution for patients who turn two before the drug is approved and funded.
As they wait, Reign’s family have been raising money through walkathons, online auctions, and selling Reign’s art. As of December 17, Reign’s GoFundMe page has raised just $131,123, far short of their multi-million-dollar goal.
“I feel like I need to fight hard now or else I’d blame myself in the end,” Ms. Johnston said.
“I would pay it off for the rest of my life if that was an option,” she said. “We simply don’t have the savings to cover a $2.8-million drug. I mean, who does?”
This is the weekly Western Canada newsletter written by B.C. Editor Wendy Cox and Alberta Bureau Chief James Keller. If you’re reading this on the web, or it was forwarded to you from someone else, you can sign up for it and all Globe newsletters here. Let us know what you think.
AROUND THE WEST
JASON KENNEY: Alberta Premier Jason Kenney is defending his government’s approach to COVID-19, arguing that the province struck the right balance between managing the pandemic and protecting the economy. In a year-end interview with The Globe and Mail’s James Keller, Mr. Kenney says experts and others who were calling for lockdowns were oversimplifying the choices faced by his government, which had to also worry about the spinoff effects to people’s finances and mental health. Experts say the province had the worst of both worlds, because out-of-control spread also hurts the economy and waiting to take action drives up infections, hospitalizations and deaths. Mr. Kenney brushes aside criticism of his government’s response, and comparing Alberta to other provinces that have had far less severe outbreaks, as “Alberta bashing.”
SITE C DAM: As B.C. continues to cope with the pandemic, its NDP government will need to deal with an issue that has hung over Premier John Horgan since he came to power more nearly four years ago: whether to scrap the Site C dam. Mr. Horgan told reporter Justine Hunter in a year-end interview that that in a normal year, Site C would be the biggest issue on the government’s agenda. An independent review by special adviser Peter Milburn will be delivered imminently, and then cabinet and Treasury Board will review his findings before it’s released publicly, likely in January. There are thousands of construction jobs on the line but also significant risks of runaway costs on what is already the costliest public works project in the province’s history.
LOCKDOWN PROTESTS: A weekend anti-lockdown protest in Calgary ended with five people facing criminal charges and others getting tickets for violating public-health orders as the city’s police force takes a more aggressive approach to the rallies.
DOWNTOWN EASTSIDE: A lawsuit alleges that the City of Vancouver tried to buy all five of the Sahota family’s dorm-style apartment buildings before its protracted expropriation of their Regent and Balmoral hotels. The revelation was contained in a lawsuit filed by a bar owner at one of those Downtown Eastside properties.
LETHBRIDGE SUPERVISED CONSUMPTION SITE: Police say there will be no criminal charges involving a supervised drug consumption site in southern Alberta that was forced to close after the province alleged financial problems. Alberta’s United Conservative government, citing an audit that revealed financial irregularities, pulled its funding from the centre in July and referred the matter to the police. Lethbridge police Chief Shahin Mehdizadeh told a news conference that the $1.6-million that the province had claimed was unaccounted for has been found.
BONNIE HENRY: Dr. Bonnie Henry, the Chief Medical Officer who has steered British Columbia through the COVID-19 pandemic, has co-written a book on her handling of the outbreak to be published in March.
FOOD DELIVERY: The B.C. government is temporarily capping food-delivery fees charged to restaurants at 15 per cent, down from about 25 per cent to 30 per cent, in a bid to help a sector facing pandemic-related challenges.
CURLING: Ontario and Manitoba have cancelled provincial playdowns ahead of the national curling championships due to the pandemic and instead declared representatives to compete in the Calgary bubble later this season.
COVID-19 ON FIRST NATIONS: The federal NDP says it’s hearing from Indigenous leaders who want to see immediate action on distribution of a COVID-19 vaccine. Manitoba MP Niki Ashton, who held a joint news conference on Monday with her colleague Don Davies, said Ottawa needs to ensure that Indigenous communities, which are of federal responsibility, receive the vaccine on a priority basis.
B.C. SCHOOL BOARD: Two special advisers have been appointed by the British Columbia government to evaluate the Chilliwack Board of Education’s commitment to safety and inclusion in schools. The province said the special advisers will determine if the actions of Chilliwack school trustees are consistent with the human rights of students and staff at schools in the district.
JUDICIAL REVIEW: A judge who visited a Metis man at his protest camp on Saskatchewan’s legislature grounds after ruling he was entitled to stay there is facing a review by his fellow judges. The Canadian Judicial Council says a panel will look into the actions of Court of Queen’s Bench Justice Graeme Mitchell. Mitchell was the judge who heard a case last summer in which the provincial government was trying to force Tristen Durocher to leave the legislature grounds in Regina. The Metis man had walked 635 kilometres from northern Saskatchewan, set up a teepee and began a fast to draw attention to the high rate of suicide among Indigenous people. The provincial government argued that Durocher was violating park bylaws that prohibit overnight camping and said his presence posed a safety risk. Mitchell said in his ruling Sept. 11 that park bylaws failed to provide exemptions to allow for “constitutionally protected political and spiritual expression” and must be changed. He also ruled that the legislature grounds are, in effect, a public square where dissent is legitimately expressed. Mitchell visited Durocher in his teepee two days later as his 44-day hunger strike came to an end.
OPINION
Eva Clayton, Sharleen Gale, Harold Leighton, Crystal Smith and Joey Wesley on Indigenous resource development: “We are no longer satisfied with a few contracts or royalties; we want equity, as our nations work to create intergenerational prosperity. This might have seemed transformational – even radical – just a few years ago. But now it’s accepted by many of Canada’s biggest companies as a means to advance resource development in Indigenous territories. "
Wendy Cox
James Keller