Vernon woman pens letter to prime minister for greater access to life-saving drug

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On Nov 6. Verleg penned an emotional letter to Prime Minister Justin Trudeau, calling for greater access to the life saving Cyctic Fibrosis drug Orkambi.

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The drug is not covered by the government’s PharmaCare program and reportedly costs roughly $250,000 a year out of pocket.

Verleg believes a negative recommendation from CADTH (The Canadian Agency For Drugs and Technologies and Health) is a factor in the government’s decision not to fund the drug.

CADTH is a non-profit organization run by the provincial and federal governments that provides information on drugs and medical devices.

“They don’t think it’s as effective as the costing, however Orkambi works for some people. It doesn’t work for everyone but there’s no drug out there that works for everyone,” Verleg said.

Verleg briefly received access to the drug through her husband’s extended health benefits plan, and said the drug dramatically improved her condition.

“Things were so great my lung function actually went up to about 69 per cent and I was able to play with my kids, and just be a normal mother and a normal wife,” she said.

But when her husband’s extended medical plan changed, she was forced to stop taking the drug as she could not afford the annual $250,000 cost.

In July 2018 Verleg filed a class action lawsuit against CADTH, the Pan Canadian Pharmaceutical Alliance as well as the provincial and federal health ministries.

The class action suit alleges that the lack of access for Orkambi is a violation of Verleg’s charter rights to life and security, and equal protection without discrimination.

“The continued deprivation of life sustaining medication from CF patients in arbitrarily unfair. The deprivation of Orkambi is based on considerations that do not respect the individual and collective rights of CF patients’ right to life security of the person,” the claim said.

There is another medication that Verleg said may help called Trikafta. Health Canada has not yet approved the medication.

In a statement to Vernon Matters, Health Canada said they have not received an application for Trikafta but, “Health Canada and Vertex Pharma, the manufacturer of Trifakta, have been in contact in regards to this product.”

The federal health agency goes on to say drugs not available in Canada may be made available to doctors through the special access program but would not be accessible if alternatives are available.

A hard journey

The days spent in hospital have taken a toll on the Verleg family. Her husband is on stress leave, and travels back and forth from Vernon to Vancouver to visit her in hospital.

“He’s put 6,000 kilometres on our vehicle in the past seven and a half weeks. The financial toll is unbelievable with gas, parking and eating,” she said.

But the hardest part she said is watching the toll of her hospital stays on her two kids ages nine and 11.

“It’s been really hard on them. My youngest doesn’t even want to talk to me because he just emotionally can’t handle it, so it’s been hard,” she said holding back tears.

Friends and family have organized a GoFundMe page to help cover some of the medical expenses.