Melissa Verleg sits with Vernon-Monashee MLA Eric Foster, who is pushing for the provincial government and a pharmaceutical company to afford her the medication that she needs to battle cystic fibrosis. (Jennifer Smith/Morning Star)

MLA pushing province and pharmaceutical to save Vernon woman

Cystic fibrosis patient can’t afford $20,000/month medication she needs to survive

All it would take is the stroke of a pen to breath life back into a Vernon woman battling cystic fibrosis, Vernon-Monashee’s MLA says.

Melissa Verleg lost access to a medication called Orkambi on Jan. 20. With it, she lost the ability to perform even the simplest of tasks such as cooking dinner and playing with her kids.

It’s a daily struggle just to breathe for the 34-year-old wife and mother of a seven and nine-year-old, who cannot afford the $20,000 monthly cost of Orkambi.

“Last December I had a pulmonary function test, it was at 58 per cent,” said Verleg, in between fits of coughing. “Since then I have been sick and lost 12 per cent of lung function.”

She has begged, pleaded and fought for support from both Vertex Pharmaceutical and the B.C. Ministry of Health, but to no avail.

See related: B.C. resident rallies for medication

“I’m just in limbo here waiting for someone to help me or get sick enough that I need a double-lung transplant,” said the Salmon Arm-born, Enderby-raised woman. “I will get there and I don’t know how long I will be able to survive at that level.”

But now she has the support of Vernon-Monashee MLA Eric Foster.

“This (Orkambi) made a huge difference in her life, she was able to live a life,” said Foster in a media conference at his office Tuesday. “Because of a power struggle between a major pharmaceutical company and the minister of health in the province of British Columbia, her health is deteriorating every day and they could fix it if they want to.

“Frankly I’m disgusted with these people, playing with somebody’s life.”

Foster is pressuring both Dix and Vertex to put policy and politics aside and help.

Vertex has made another effort to get the drug listed under the common drug review, but that falls under federal jurisdiction and a decision isn’t expected until Aug. 1, with a formal process expected to take up to another year until it is approved in B.C.

In the meantime, there have been exceptions made for people desperately needing medical coverage, and Foster demands the same for Verleg.

“A lady in Victoria, who is the same boat as Melissa, and a lady in Victoria, which is great,” said Foster. “Unfortunately the won’t give it to Melissa because they don’t think she is sick enough”

He also points to the case of a lady in Vancouver who needed Soliris, which costs $750,000 a year, which Dix made a ministerial decision to approve coverage of for a year.

Verleg even spoke to Dix last fall, prior to rallying on the front steps of the Legislature.

“He told me that he knew I needed the drug to live but he wasn’t going to fund it.”

See related: LETTER: A plea to the health minister

In the meantime, she gets sicker every day and says even one cold could essentially kill her.

While it was not a cure-all, Orkambi made a drastic difference in Verleg’s quality of life and it is the only drug that halted the progression of the disease.

“This drug could stabilize me for a very long time,” said Verleg. “It could give me maybe 10 years.”

She was taking Orkambi for 18 months, just two pills, twice a day, “the easiest treatment I’ve ever been on.”

Since running out of her prescription she has developed cystic fibrosis-related diabetes.

“I was sick within weeks.”

She can hardly sleep as she lays there coughing because her lungs are so weak and filled with mucus.

And her family wears the burden of her disease, with her husband caring for her and her children seeing mommy so sick.

“My oldest struggles a lot. He wears that weight on his shoulder, he knows mom is really sick. It definitely affects them too.”

Orkambi is currently covered in many other countries around the world.

“We are the last G7 country to fund Orkambi,” said Verleg. “I’m not sure what more evidence Canada wants that these other countries didn’t need.”

Adds Foster: “This is just about money.”


@VernonNews
jennifer@vernonmorningstar.com

Like us on Facebook and follow us on Twitter.

 

Vernon’s Melissa Verleg speaks to a crowd of approximately 100 gathered on the steps of the B.C. Legislature Wednesday rallying for access to medication to battle cystic fibrosis. (Ragnar Haagen/Black Press)

Melissa Verleg (right), pictured with her husband and two boys, is fighting to have the life-sustaining medication she needs covered under B.C. medical. (Shira Brown photo)

Melissa Verleg is battling cystic fibrosis, but has recently learned that the only medication that helps her tackle simple daily tasks, isn’t covered through insurance. (Photo submitted)

Just Posted

RCMP wish North Okanagan grads safe season

Friendly reminders to grads, friends and families to enjoy a safe graduation

Rail trail facility plan open to Coldstream tonight

Development options include washroom and commercial building

UPDATE: Logging truck spill cleared east of Lumby

Accident happened between McInnes Road and Rawlings Lake Road

Community comes together for Easter Seals Camp Winfield

On June 15, the community of Lake Country came out to help raise funds for Easter Seals Camp Winfield

PHOTOS: Vernon Community Music School hosts “Hootenanny Hoedown”

The music school hosted their annual year-end country fair on June 7

PHOTOS: Elusive ‘ghost whale’ surfaces near Campbell River

Ecotourism operator captures images of the rare white orca

RCMP Emergency Response team swarms Kelowna home

Water is flooding Highway 33 in Kelowna Monday afternoon

Victoria mom describes finding son ‘gone’ on first day of coroners inquest into overdose death

Resulting recommendations could change handling of youth records amidst the overdose crisis

Dash-cam video in trial of accused cop killer shows man with a gun

Footage is shown at trial of Oscar Arfmann, charged with killing Const. John Davidson of Abbotsford

Suicide confirmed in case of B.C. father who’d been missing for months

2018 disappearance sparked massive search for Ben Kilmer

Eight U.S. senators write to John Horgan over B.C. mining pollution

The dispute stems from Teck Resources’ coal mines in B.C.’s Elk Valley

Restrictive policies affecting labour mobility for care aides in B.C.

‘I had to take two competency exams and pay over $1,400,’ said an Okanagan care aide

Threats charge against Surrey’s Jaspal Atwal stayed

Atwal, 64, was at centre of controversy in 2018 over his attendance at prime minister’s reception in India

Emerging artists given chance at Shuswap’s Roots Blues Festival

Chosen participants can perform two 40-minute sets on the Wednesday or Thursday night, and more.

Most Read