A Vernon woman who can’t afford the very medication she needs to survive isn’t giving up hope, despite feeling like much of the world has given up on her.
Mother of two young boys and wife Melissa Verleg battles cystic fibrosis, for which there is no cure. The Salmon Arm-born, Enderby-raised woman couldn’t even manage the two-minute walk to her sons’ school before finding a medication that helped her regain her life.
“It completely stabilizes us so that we don’t get the lung infections that kill our lungs and kill us,” 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.
“If I come off of it my health is going to deteriorate very quickly,” said Verleg, who managed to get a short-term supply of the medication to last her another two weeks to a month. “My doctor said that within a week of coming off the medications I will be sick.”
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.
“That’s what Lilia and I are doing all day, every day for the last month — lobbying the government,” said Verleg, whose husband earns the sole income, aside from her disability assistance.
“He has a good job but it’s not enough to afford this medication,” 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.
“He is well aware of the situation,” said Verleg. “He admits that we need it and we will die without it.”
Yet Verleg didn’t receive the support she had hoped for. She was denied support, denied compassionate coverage and left feeling hopeless.
“He’s not interested in solving the situation. There was no compassion, no sympathy.”
What is needed is to bring Orkambi onto the B.C. formulary, according to Verleg — something the Minister of Health is needed for to negotiate with the medication producer.
Meanwhile, she says there is another cystic fibrosis drug that’s $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.
“We are having meaningful meetings with other senior individuals in other provincial ministries of health including fellow ministers (to Dix),” said Chris Macleod, national chair of the society.
Now they are calling on Premier John Horgan to intervene with Dix on access to this life-sustaining drug.
“Premier 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.,” said Macleod.
In the meantime, those who would like to help Verleg’s battle are urged to write to Dix and Horgan and/or visit her Go Fund Me account at https://www.gofundme.com/yymub-melissas-medical-expenses.