June 19 - Terminal Langford girl to lose provincial funding for treatment

Good morning !

Today we look at two issues tied to lack of provincial funding: one affecting Saanich’s vulnerable population and the other affecting a young Langford girl and her family.

— Robyn

Today’s approx. read time: 6 minutes

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NEWS

Province ends medication funding for terminally ill Langford girl

Today, nine-year-old Charleigh Pollock is scheduled to receive her last provincially paid infusion of a drug that costs $1M a year to treat a rare neurological disorder that is cruelly expected to take her life.

Charleigh is the only child in BC—and one of fewer than 20 in Canada—diagnosed with CLN2, or Batten disease, an extremely rare and terminal condition that causes vision loss, seizures, cognitive and physical movement issues, and a shortened life expectancy.

BC’s health ministry has ruled that as of today, the province will no longer pay for her treatments with Brineura —the only drug available to treat the disease for which there is no cure—through BC’s Expensive Drugs for Rare Diseases (EDRD) program

“I empathize deeply with Charleigh's family, and my heart goes out to them,” Health Minister Josie Osborne said in a release. 

“I know this is not what Charleigh’s family wanted to hear. It is not what any single one of us wanted to hear.”

Charleigh has been receiving Brineura since 2019, but last year, her condition had gotten to the point where she met the ‘discontinuation' criteria, the minister said.

Following public pressure, Osborne asked Canada’s Drug Agency (CDA) to investigate to determine whether continuing treatment would benefit Charleigh, the minister said.

“It is understandable that anyone would hold out hope that the CDA’s comprehensive review of the latest evidence in Canada and around the globe could have brought us to a different conclusion; unfortunately, that was not the case,” Osborne said.

Charleigh’s mother Jori Fales told CHEK she would process the news before issuing a statement, likely today.

Read the full story here.

⚠️ Capital Bulletin

Victoria property taxes due July 2. [City of Victoria]

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NEWS

BC Housing denies expansion of Saanich shelter, despite saying it would earmark funding for it

Saanich Mayor Dean Murdock will write to BC Housing to urge the agency to fund the expansion of Victoria Native Friendship Centre’s (VNFC) shelter to 50 from 25 beds, with 10 more for extreme weather events (typically occurring approximately 40 days a year), after receiving unanimous support from the council.  

Ron Rice, executive director of VNFC, told Saanich council that the denial of additional funding from the provincial housing authority came as a shock.

“Our team was confused. Our board was confused. I think, in conversations with the mayor of Saanich and the mayor of Victoria, the municipalities are confused,” Rice said at Monday’s council meeting.

Rice said that when planning for the shelter’s expansion began in December, a representative from BC Housing pulled him aside at an event to ask if money should be earmarked for the project. Rice told the person ‘yes’ and said VNFC would confirm April 1. 

The shelter expansion got the green light from both the fire department and Saanich council, prompting VNFC to move forward with the BC Housing funding application.

According to Murdock, the housing agency gave two reasons for the denial: that there was no money to offer and that the request was filed in the wrong place.

“I don't accept that the application simply went into the wrong folder and that the money in that particular file was not available,” Murdock said. 

Rice and Murdock both pointed out that the province has said repeatedly—including last week—that it is committed to building out shelter spaces in Greater Victoria.

“Our shelter isn't huge, it's not mighty, it's not the biggest. It's sort of all that we can do at this point, and we're happy to do it, but we just sort of need to get over this hurdle of money,” Rice said.

The funding denial comes as Victoria struggles to offer enough services to unhoused people in the region. Mayor Marianne Alto has made several requests to neighbouring municipalities to expand shelter spaces and services to alleviate pressure on the city.

Read the full story here.

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⭐️ Capital Picks

🎤 Saanich teen a hit on America’s Got Talent: Chase Varnes, 13, impressed the judges this week, scoring three yeses to move to the next round. [Watch]

📚 At Glenlyon Norfolk School, a world-class education is closer than you think. Schedule a tour to explore their campuses and learn about financial support opportunities.*

🐦 Male oystercatcher feeds its chick on the shoreline of Oak Bay. [Facebook photo]

🎓 Pure Day Spa celebrates grads with Martinelli bubbles, a macaron, and 15% off two luxe spa packages featuring glowing facials, manis, and pedis! The ultimate graduation glow-up.*

🚴 end2end Vic-Port Hardy cycling relay for cancer relief. 

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🗞️ In Other News

Colwood puts the collar on food trucks at Esquimalt Lagoon beach
If you went to this beach on any weekend last summer, chances are you’d see two or three trucks—but not this year. Colwood wants to shift commercial activity away from the lagoon and toward other city parks, public places, and eateries in Colwood Corners and Royal Bay. So, this summer, food trucks will hit the beach only on Sat., Aug. 23, during Colwood’s Music in the Park series. Food truck support has been solid, but the district said it also is concerned with the impact on the migratory bird sanctuary. [Black Press]

Mayfair owner offers $6M for 3 Hudson’s Bay Company leases
Ruby Liu calls it the beginning of a new department store empire. The Chinese billionaire wants to buy the leases of Bay stores at Mayfair Shopping Centre, Nanaimo’s Woodgrove Centre, and Tsawwassen Mills—three malls she owns. The proposal would need court approval and is separate from Liu’s bid to buy up to 25 leases held by the Bay and related stores Saks Fifth Avenue and Saks Off Fifth. Liu says she is willing to spend millions of dollars to renovate stores at Mayfair and other locations, and if successful, she plans to open a modern retailer to be named after herself. [Times Colonist]

Islands Trust Conservancy receives $1.15M anonymous donation
The donor, who wished not to be named, earmarked $1 million for the Islands Trust Conservancy’s Opportunity Fund, which supports hard-to-fundraise costs associated with land protection projects, and to match funds to incentivize increased donations to land acquisition projects. The other $157K was allocated to the org’s Property Management Fund, which provides land management funding. Now in its 35th year, the conservancy has protected 115 private properties covering 1,380+ ha. [Islands Trust Conservancy]

🗓️ Things to do

⚾ School Spirit Day baseball at RAP: HarbourCats host Nanaimo today. 11am. [Info]

🎶 Alfie Zappacosta: Hear the two-time Juno Award-winning singer and classical guitarist perform at Hermann’s tonight. 7pm. [Info]

🎭 The Last Yiddish Speaker: See the thought-provoking drama at the Black Box Theatre in Emanu-El Synagogue tonight through June 29. [Info]

🪶 National Indigenous Peoples Day: Celebrate local Indigenous culture with live performances, canoe challenges, and a frybread station at Royal Roads tomorrow. 10am-3pm. [Info] 

🍻 Fridays at the Station: Shop the market, listen to live music, and enjoy some tasty craft beer at Langford Station tomorrow. 4-8pm. [Info]

😆 Improv Against Humanity: Based on the game Cards Against Humanity, performers will create scenes based on the raunchy and hilarious card combinations at Theatre SKAM tomorrow. 8:30pm. [Info]

🥍 Victoria Shamrocks host Coquitlam Adanacs in a battle of frontrunning teams in the Western Lacrosse Association at Q Centre tomorrow. 6:45pm. [Tickets]

💚 Club XCX: Dance to the bratty music of Charlie XCX at Capital Ballroom. Sat. 10:30pm. [Info]

🧁 Sweet Street: Westshore Town Centre’s one-day food festival returns with a sugar-fueled lineup of desserts, drinks, and treats from local vendors. Sat. 11am-3pm. [Info]

🍵 Wars and Revolutions: How Tea Made the World: Step back in time with this workshop with Island Elixir Tea Company, learning how tea shaped the course of history, at Langford Station. Sat. 5:30pm. [Info]

🧹 Solstice Park FireSmart Cleanup: Help remove invasive scotch broom and dead wood debris with Langford Fire and Parks departments at FireSmart Solstice Park (AKA Rain Garden Park). Sat. 9:45am-1pm. [Info]

👀 In Case You Missed It

Wednesday’s headlines: Langford company owner guilty of sexually assaulting employee; Body found off Oak Bay; Premier Eby not pleased with BC Ferries China contract. [June 18]

Photo challenge could give a ‘peak’ into the past. [LJI/ Capital Daily]

Consider paying mileage for out-of-community patient travel, BC premier tells Island Health. [CHEK]

Snowbirds to fly over Victoria on July 22.

GVPL’s Pride book list: Check out titles for adults and teens. [GVPL] 

Mental health run: Sachin Latti attempts to run 100km a day for 75 days. [Livetracker] 

Big catch: A Cooper’s hawk guards its freshly caught meal. [Facebook video]

That’s it!

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