A Vernon woman who can鈥檛 afford the very medication she needs to survive isn鈥檛 giving up hope, despite feeling like much of the world has given up on her.

Mother of two young boys and wife , for which there is no cure. The Salmon Arm-born, Enderby-raised woman couldn鈥檛 even manage the two-minute walk to her sons鈥� school before finding a medication that helped her regain her life.

鈥淚t completely stabilizes us so that we don鈥檛 get the lung infections that kill our lungs and kill us,鈥� 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.

鈥淚f I come off of it my health is going to deteriorate very quickly,鈥� said Verleg, who managed to get a short-term supply of the medication to last her another two weeks to a month. 鈥淢y doctor said that within a week of coming off the medications I will be sick.鈥�

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.

鈥淭hat鈥檚 what Lilia and I are doing all day, every day for the last month 鈥� lobbying the government,鈥� said Verleg, whose husband earns the sole income, aside from her disability assistance.

鈥淗e has a good job but it鈥檚 not enough to afford this medication,鈥� 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.

鈥淗e is well aware of the situation,鈥� said Verleg. 鈥淗e admits that we need it and we will die without it.鈥�

Yet Verleg didn鈥檛 receive the support she had hoped for. She was denied support, denied compassionate coverage and left feeling hopeless.

鈥淗e鈥檚 not interested in solving the situation. There was no compassion, no sympathy.鈥�

What is needed is to bring Orkambi onto the B.C. formulary, according to Verleg 鈥� something the Minister of Health is needed for to negotiate with the medication producer.

Meanwhile, she says there is another cystic fibrosis drug that鈥檚 $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.

鈥淲e are having meaningful meetings with other senior individuals in other provincial ministries of health including fellow ministers (to Dix),鈥� said .

Now they are calling on Premier John Horgan to intervene with Dix on access to this life-sustaining drug.

鈥淧remier 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.,鈥� said Macleod.

In the meantime, those who would like to help Verleg鈥檚 battle are urged to write to Dix and Horgan and/or visit her Go Fund Me account at