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

Two people sent to hospital in View Royal crash

Crash on Island Highway near Six Mile Road snarled the evening commute

Physician assistants say they can help B.C. health care woes

Reducing wait times, improving doctor efficiency is the goal

VIDEO: Victoria writer and filmmaker turns her mental illness into mental strength

Mental illness robs Victoria woman of happiness from age 10

Sewage leak closes sterilizing room at Victoria General Hospital

Royal Jubilee equipment sharing means no VGH surgeries cancelled

Thieves target Sooke school’s emergency supplies

Journey middle school victims for a second time

VIDEO: First legal cannabis purchases as midnight strikes in eastern Canada

Newfoundland and Labrador was the first province to kick off the sale of cannabis, just after midnight local time

Advance voting begins Oct. 10 in Greater Victoria

The polls open at 8 a.m. for the 2018 municipal election with the general election taking place Oct. 20

Find your future at Black Press career fair in Victoria

More than 70 booths expected at Bay Street Armoury on Oct. 25

Boeser tallies in OT as Canucks beat Penguins 3-2

Vancouver wins without star rookie Pettersson

Mayor of Kamloops says ‘history has been made’ with vote on B.C.’s lone pot shop

The store to be run by the province in B.C.’s Interior is opening Wednesday as pot sales become legal across Canada

New bus route to ‘replace’ Greyhound along Trans-Canada Highway

Rider Express Transportation says they will soon begin a bus service from Winnipeg to Vancouver

U.S. pot firm urges Trump to deny Canadian producers ‘competitive advantage’

The challenge for U.S. firms lies in the fact that while recreational cannabis is legal in nine states and medicinal pot in 22 others, it remains illegal under federal law

Government says imprisoned Canadian terror suspects must face consequences

Public Safety Minister Ralph Goodale showed little sympathy Tuesday for such individuals who now want to return to Canada

How rules for inmate segregation in Canada will change under Bill C-83

Federal government proposing changes to rules around inmates in federal correctional institutions

Most Read