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

Annett finishes season on the podium at Ironman Arizona

Penticton triathlete sets new course record on the bike

McIvor left a legacy of community building

Former Penticton librarian, city councillor and school trustee dies at home.

Crash closes Eckhardt briefly

It’s not clear if there were any injuries resulting from the minor crash

Penticton vacation rental licences quadruple since 2015

More than 100 of the approximately 140 business licences handed out by the city came since 2015

Penticton reporter reflects on covering Charles Manson

Charles Manson, leader of a murderous cult, died on Sunday at 83

Heavy snowfall expected on Coquihalla

Snow forecast for mountain highways

Serious home invasion reported in Kamloops

Two people are in hospital with serious injuries following a home invasion

Cash donations create purchasing power

Salvation Army and food banks stretch a donated dollar a long way

ICBC overbilling for crash repairs not the problem, dealers say

Collision repair shops reject union claim of inflated costs

B.C. groups to address child sex abuse in sports

viaSport is organizing a full day of education in association with Canadian Centre for Child Protection and the Coaching Association of Canada.

Report sets exercise guidelines for young kids, including ‘tummy time’ for babies

Kids aged one to four should get at least three hours of physical activity throughout the day

Stampeders return to Grey Cup with 32-28 win over Edmonton Eskimos

The Stampeders will face the Toronto Argonauts next Sunday in Ottawa for the title

Traxxas Monster Truck Tour to roll into Kelowna

Monster Trucks at Prospera Place on Jan. 13-14, 2018.

Nebraska approves TransCanada’s Keystone XL pipeline

Nebraska’s Public Service Commission approved TransCanada’s Keystone XL route in a close vote

Most Read