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

Several local schools took part in Student Vote for the B.C. election. Black Press file photo
Students in Student Vote support NDP in Comox-Courtenay

Unlike actual vote, students in Mid Island-Pacific Rim back Greens

Father Charles has devoted his life to protecting and preserving natural habitats and has inspired generations of volunteers to work together to protect and preserve forests and rivers. Photo submitted
Valley environmentalist and Catholic priest-hermit Father Charles Brandt passes away

He devoted his life to protecting and preserving natural habitats

Carolyn and Steve Touhey came across a pod of humpback whales while on their boat Sunday, Oct. 25. Photo supplied
VIDEO: Boaters encounter pod of humpbacks near Comox

A Comox Valley family had a meeting with a humpback whale family… Continue reading

Candice Woloshyn prepares her flower beds for the next season at her ‘Dirty Girl Flowers’ farm in Merville. Despite the pandemic, Woloshyn was able to sustain her homegrown business as community members opted for regular deliveries of fresh cut flowers. Photo by Binny Paul/ Campbell River Mirror.
Vancouver Island flower farmers were blooming as the pandemic wilted everything else

Floriculturists saw increased subscriptions as fresh flowers became a ‘sight for sore eyes’ during isolation

Provincial health officer Dr. Bonnie Henry arrives for briefing on the COVID-19 situation, B.C. legislature, Oct. 26, 2020 (B.C. government)
B.C. records 217 more COVID-19 cases, mask use urged

Infection spike continues, 21 senior facilities affected

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

Join Black Press Media and Do Some Good

Pay it Forward program supports local businesses in their community giving

An elderly woman wearing a face mask to curb the spread of COVID-19 walks past an advertisement for a television series in Vancouver, B.C., Sunday, Aug. 30, 2020. THE CANADIAN PRESS/Darryl Dyck
B.C. has been under a COVID-19 state of emergency for more than half the year

Province has been under a state of emergency for 32 weeks – and counting

Los Angeles Dodgers celebrate after defeating the Tampa Bay Rays 3-1 to win the baseball World Series in Game 6 Tuesday, Oct. 27, 2020, in Arlington, Texas. (AP Photo/David J. Phillip)
L.A. Dodgers beat Rays 3-1 to win 1st World Series title since 1988

National League champs claim crown in six games

Seven-year-old Aaliyah Rosa was found dead in an apartment in Langley in July. (Langley Advance Times files)
Child’s body cold, no pulse: Off-duty cop testifies in Langley mother’s murder trial

The seven-year-old girl’s mother faces a first-degree murder charge

A picture of John taken at Children’s Hospital Vancouver last week. Photo courtesy, Alicia Sewid.
RCMP investigating after young boy run over by SUV in Campbell River parking lot

The seven-year-old has multiple injuries including a broken pelvis and was admitted to Children’s Hospital in Vancouver

People march during a climate strike in Montreal, Friday, Sept. 27, 2019. THE CANADIAN PRESS/Graham Hughes
Judge rejects 15 youths’ climate change lawsuit against Canadian government

Justice Michael Manson has granted the government’s motion to strike the plaintiffs’ claim

Most Read