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)

Vernon and Victoria women fight for access to life-saving drug

Cystic Fibrosis patients recently lost coverage of drug Orkambi, but the company is offering a reduced price to the government

Hope may finally be on the way for thousands of Canadian cystic fibrosis patients who desperately require access to the life-saving drug Orkambi.

People like Vernon’s Melissa Verleg and Victoria’s Lilia Zaharieva.

For CF patients, access to Orkambi is the difference between life and death.

Yesterday, Vertex Pharmaceuticals, the manufacturer of Orkambi, made an unsolicited offer to the pan-Canadian Pharmaceutical Alliance to open negotiations for the drug at a significantly reduced price so that Canadian CF patients can obtain much needed access to this drug.

“The Canadian Cystic Fibrosis Treatment Council applauds Vertex for coming to the table with the provinces and proposing a substantial price reduction for Orkambi” said Christopher MacLeod, Chair of the Canadian Cystic Fibrosis Treatment Council. “CF does not wait for bureaucracy. CF is a serious, progressive, life shortening and irreversible disease. CF patients lose considerable lung function every year that they are not treated with medication such as Orkambi.”

In light of the offer, Verleg is is continuing her efforts with Operation Orkambi.

“This is unprecedented and unusual but a positive step for us,” said Verleg, a wife and mother of two. “We need to make sure Adrian Dix knows that we expect him to accept this offer and make Orkambi available immediately.”

Currently, Canada’s provinces stand alone in the world as the only governments that have not either already provided patient’s access to Orkambi, or are not actively in discussions with Vertex to reach an agreement.

The confidential offer follows a recommendation from the Canadian Agency for Drugs and Technologies in Health that Orkambi be funded only if there was a reduction in price.

“The fact is that individual provinces have the power to make Orkambi available to all eligible Canadians; we urge the provinces to share our sense of urgency and work with us to find an immediate solution that provides broad access for all eligible Canadians,” Vertex states in a release. “We are ready to meet anytime, anywhere to outline a process that will bring Orkambi to patients in need.”

Thousands of patients with CF around the world, including those in the U.S., Ireland, Germany, France, Denmark, Luxembourg, Austria and Italy, are currently benefiting from access to this important medicine. Patients in the U.S. have had access to Orkambi since July 2015.

Nearly two years have passed since Orkambi was approved by Health Canada after priority review. The time is now to get Canadian CF patient’s access to Orkambi, they are suffering without it and their time is limited.

Verleg urges residents to call Dix at 250-953-3547 and email him at hlth.health@gov.bc.ca. She also says Premier John Horgan needs to know that this deal is being urged, he can be reached at 250-387-1715 and premier@gov.bc.ca.

“We can’t send too many emails or make enough phone calls so please help,” said Verleg.

“I have been pretty quiet about Orkambi lately however there is definitely movement happening in the background and now is our time to strike. We cannot miss this opportunity.

“Thank you so much for your continued support and taking the time out of your busy lives to help me get the medication I need.”



jennifer@vernonmorningstar.com

Like us on Facebook and follow us on Twitter.

Just Posted

Snowfall warning between Merritt and Hope

As much as 20 centimteres of the white stuff is expected along a stretch of the Coquhialla

Gallery celebrates long history of art appreciation

Gallery Odin, at Silver Star Mountain, is gearing up to open their 16th annual Winter Exhibition

Traffic stopped on Highway 97B due to crash

The incident took place south of Mellors Store.

Comedian/magician visiting Lake Country

Wes Barker is performing at Creekside Theatre, Nov. 25

‘Listen to your gut’ urges injured skier

Mike Shaw was told he’d never walk again after an accident four years ago, but he defied the odds

Drones used in search for clues about missing women

A volunteer search party was supported by professional drone operators

Vernon poet makes poetry prize shortlist

He’s been involved with the craft since the ’70s, gaining recognition along the way

Studio e is all about excitement and energy

Vernon studio hosts open house with concert, paintings, wine and cheese

LIVE: BC Liberals kick off leadership debate in Nanaimo

Candidates’ forum is at noon at Vancouver Island Conference Centre

Panthers advance; Maroons fall to Dukes

The Vernon Panthers are moving to the B.C. Subway Bowl semifinals, while the Fulton Maroons are done

WATCH: Thousands gathering in Abbotsford for Const. John Davidson funeral procession

Celebration of life to follow at Abbotsford Centre at 1 p.m.

Back-to-back wins for the Vees this weekend

Penticton Vees take down Capitals 10-1

Start on time: Canucks looking to shake first-period struggles

Canucks centre Bo Horvat said the formula for getting a leg up is there for everyone to see

COMMUTER ALERT: Snowfall warnings in effect across B.C.

Travelling this weekend? Check the forecasts before hitting the road

Most Read