B.C. women still battling for medication coverage

B.C. women still battling for medication coverage

Vernon and Victoria women fighting to get the drug they need to survive covered under B.C. medical

A Vernon woman who can’t afford the very medication she needs to survive isn’t giving up hope, despite feeling like much of the world has given up on her.

Mother of two young boys and wife Melissa Verleg battles cystic fibrosis, for which there is no cure. The Salmon Arm-born, Enderby-raised woman couldn’t even manage the two-minute walk to her sons’ school before finding a medication that helped her regain her life.

“It completely stabilizes us so that we don’t get the lung infections that kill our lungs and kill us,” said the East Hill resident, whose children attend Silver Star Elementary.

Except she recently learned that her life-saving medication, called Orkambi, is no longer covered under health insurance.

“If I come off of it my health is going to deteriorate very quickly,” said Verleg, who managed to get a short-term supply of the medication to last her another two weeks to a month. “My doctor said that within a week of coming off the medications I will be sick.”

In the meantime, she has been fighting and campaigning to get some support from the provincial government to have Orkambi included in the B.C. health coverage. Her fight is joined by Victoria resident Lilia Zaharieva, who is in the same situation.

“That’s what Lilia and I are doing all day, every day for the last month — lobbying the government,” said Verleg, whose husband earns the sole income, aside from her disability assistance.

“He has a good job but it’s not enough to afford this medication,” she said of the approximately $22,000/month or $250,000/year Orkambi price tag.

But recently Verleg thought her efforts had paid off when she received an unexpected phone call from provincial health minister Adrian Dix.

“He is well aware of the situation,” said Verleg. “He admits that we need it and we will die without it.”

Yet Verleg didn’t receive the support she had hoped for. She was denied support, denied compassionate coverage and left feeling hopeless.

“He’s not interested in solving the situation. There was no compassion, no sympathy.”

What is needed is to bring Orkambi onto the B.C. formulary, according to Verleg — something the Minister of Health is needed for to negotiate with the medication producer.

Meanwhile, she says there is another cystic fibrosis drug that’s $308,000/year that is covered, which supports one form of gene mutation with the complex disease. Unfortunately, it does not benefit her gene mutation, despite the fact that hers is the most common.

Despite her disappointment with Dix, Verleg is continuing to fight as long as she has the strength to do so.

And so too is the Canadian Cystic Fibrosis Society.

“We are having meaningful meetings with other senior individuals in other provincial ministries of health including fellow ministers (to Dix),” said Chris Macleod, national chair of the society.

Now they are calling on Premier John Horgan to intervene with Dix on access to this life-sustaining drug.

“Premier Horgan must intervene directly and take a leadership role in this file to ensure that a path forward can be found to secure access to this drug, Orkambi, for the residents of B.C.,” said Macleod.

In the meantime, those who would like to help Verleg’s battle are urged to write to Dix and Horgan and/or visit her Go Fund Me account at https://www.gofundme.com/yymub-melissas-medical-expenses.

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

Just Posted

B.C. wineries are open for indoor tasting despite new provincial health regulations. Photo- 
50th Parallel Winery, Instagram.
Indoor wine tastings still allowed in B.C., not considered a ‘social gathering’

“Tasting is really just part of the retail experience. The analogy I use is you wouldn’t buy a pair of pants without trying them on.”

Vernon Public Art Gallery executive director Dauna Kennedy and board member Kyle Britton accept a $43,400 grant from the BC Arts Council one-time StrongerBC fund amid the COVID-19 pandemic April 9, 2021. (VPAG)
$43K boost for Vernon gallery

Province backs local art gallery with one-time pandemic grant

A 46-year-old man from Armstrong died in Revelstoke hospital after being injured in the Lumby area. (File photo)
Armstrong snowmobiler dies in Revelstoke hospital

46-year-old man injured in Tsuius Mountain area of Monashees around Lumby area

Part of the massive mess left behind in a Spallumcheen rental home owned by Wes Burden, whose tenants bolted from the property in the middle of the night. Burden is now facing a hefty cleaning and repair bill as a result. (Photo submitted)
Spallumcheen landlord’s home trashed by tenants

Rooms filled with junk, garbage, human and animal feces; landlord scared to rent again

A car sheared a Hydro pole and the driver was pinned by a fence pole on 43rd Avenue Saturday, April 10. (Carmen Jaster photo)
Suspected impaired driver ‘lucky to be alive’ after crash in Vernon yard

Impaired driving investigation underway after driver shears Hydro pole and narrowly misses being impaled

Burnaby MLA Raj Chouhan presides as Speaker of the B.C. legislature, which opened it spring session April 12 with a speech from the throne. THE CANADIAN PRESS
B.C. NDP promises more health care spending, business support in 2021 budget

John Horgan government to ‘carefully return to balanced budgets’

The former Summerland Asset Development Initiative building on Prairie Valley Road in Summerland was suggested as the site for a temporary transitional housing facility for the community. However, Summerland council has rejected this proposal. (John Arendt - Summerland Review)
Transitional housing facility considered for Summerland

Temporary facility would occupy former youth centre location

Shayla, an 8-pound black and grey Havanese, was stolen from outside a store on Banks Road on Saturday. (Contributed)
Stolen pup located, Kelowna RCMP confirms

Mounties said on April 12 that Shayla, the 8-pound, black and grey Havanese dog, has been located safe and sound

Penticton Vees continue their winning streak carrying a 5-0 win title as of Sunday night's hockey action. (Cherie Morgan/Cherie Morgan Photography)
Penticton Vees continue winning streak

Sunday night’s 6-1 win has them with five in a row since the start of the season

A sign on a shop window indicates the store is closed in Ottawa, Monday March 23, 2020. The Canadian Federation of Independent Business is raising its estimate for the number of businesses that are considering the possibility of closing permanently. THE CANADIAN PRESS/Adrian Wyld
Small business struggling amid COVID-19 pandemic looks for aid in Liberals’ budget

President Dan Kelly said it is crucial to maintain programs to help businesses to the other side of the pandemic

The National Security and Intelligence Committee of Parliamentarians says that includes attempts to steal Canadian research on COVID-19 and vaccines, and sow misinformation. (AP Photo/Esteban Felix)
Intelligence committee warns China, Russia targeting Canadian COVID-19 research

Committee also found that the terrorist threat to Canada has shifted since its last such assessment

Parliament Hill is viewed below a Canada flag in Gatineau, Quebec, Friday, Sept. 18, 2020. A new poll suggests most Canadians are feeling more grateful for what they have in 2020 as a result of COVID-19 pandemic.THE CANADIAN PRESS/Sean Kilpatrick
Canada’s greenhouse gas emissions increased slightly in 2019: report

2019 report shows Canada emitted about one million tonnes more of these gases than the previous year

A crane stands in the middle of a fire-ravaged Glenmore Road construction site on Thursday, April 8. (Aaron Hemens - Capital News)
Evacuation order remains in effect around burned Kelowna construction site

Assessment of potentially risky crane to take place this afternoon

Dr. E. Kwok administers a COVID-19 vaccine to a recipient at a vaccination clinic run by Vancouver Coastal Health, in Richmond, B.C., Saturday, April 10, 2021. THE CANADIAN PRESS/Jonathan Hayward
B.C. to register people ages 40+ for COVID-19 vaccines in April

Appointments are currently being booked for people ages 66 and up

Most Read