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

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