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.

Just Posted

New funding opens for industry innovation

Northern Development Initiative Trust opened new funds, focused on areas impacted by the pine beetle

Former resident wins filmmaking award

Veronika Kurz will be able to make her film with $15,000 cash and in-kind services, up to $100,000

Terrace River Kings win CIHL regular season

The boys held a strong enough lead in points to claim the banner after a 15-2 win Saturday

Terrace residents discuss poverty at provincial engagement meeting

80 people were there as well as the Minister of Social Development and Poverty Reduction

Shames Mountain named one of the world’s Top 10 ski resorts

The UK magazine listed Shames alongside Whistler and hills in Italy, Japan and Austria

VIDEO: Orcas put on a show near Hornby Island

Louis Jobodin shares photos and video of his experience

Premier offers condolences to family of boy, 15, killed in Vancouver crossfire

John Horgan: ‘No stone is to be left unturned until we find the perpetrator of this heinous crime’

VIDEO: Explorers uncover Canada’s deepest cave in Fernie

The cave, named Bisaro Anima, was confirmed to have broken the record on New Year’s Day

Players sought for National Aboriginal Hockey Championships

ISPARC calls for bantam/midget players to register for selection camp in Kamloops

Vernon to host largest Special Olympics B.C. Winter Games in 2019

Games to be held Feb. 21-23, with more than 800 athletes expected to take part

Ex-BC Liberal staffer focused on ‘favourable’ ethnic communities in scandal: lawyer

Former communications director Brian Bonney’s sentencing hearing for breach of trust is underway

Sunwing vacation passengers left at Abbotsford airport

YXX staffers receive praise for help to passengers; airline criticized

Ice dancers Virtue and Moir to carry flag for Canada at 2018 Olympics

The pair earned a gold medal at the 2010 Vancouver Olympic Games

Most Read