“The only reason I have the voice to fight is because my community came together and gave it to me,” she says. /
The last we heard from Lilia Zaharieva, she was fighting on behalf of all British Columbians for access to Orkambi — the life-saving drug that has completely altered the quality of life for Zaharieva and thousands of other sufferers of Cystic Fibrosis.
Zaharieva hosted a rally on the front lawn of the Legislative Building on Nov. 29, where she, and many others whose life has been touched by Cystic Fibrosis, pleaded for Health Minister, Adrian Dix, to include Orkambi in B.C.’s Fair Pharmacare Formulary.
With her supply of Orkambi set to run out at the end of 2017, and no accommodations in preparation, Zaharieva decided to take time off in December from petitioning and battling against the NDP government to spend time with her loved ones and those who had supported her throughout it all.
Zaharieva says the last few months of her life have been “paralyzing.” With her supply of Orkambi exhausted, Zaharieva was forced to turn to GoFundMe as a way of sourcing the money for another month’s supply.
“It just made me feel so ashamed,” she explains. “It’s really hard to ask for money, especially to ask for so much.”
Zaharieva was about to give up, but supporters were able to crowdsource $20 000 dollars in the nick of time.
“As soon as I take one tentative step forward, the ground appears beneath me, right before I’m about to go off the deep end,” she says.
When asked if she has spoken to Adrian Dix in 2018, Zaharieva recounts a town hall meeting she attended in Sidney. The meeting was led by the Green Party and was specifically concerning healthcare.
“You know that feeling after you’ve had an argument with someone and you think about what you should have said for days after? That’s how I felt after that meeting,” Zaharieva recalls. “He started off by making a really awkward joke about how approximately half of every tax dollar goes to the Ministry of Health, and how they have such a large budget – 19.2 billions dollars in 2016.”
Zaharieva noted that Vertex, the manufacturer of Orkambi, only had a product revenue of approximately 2.17 billion in 2017, globally. In the past, Adrian Dix has urged Vertex to be the one to bare the responsibility of providing compassionate care of Orkambi to those in need . While the B.C. Ministry of Health has a considerably larger amount of people to care for, it still begs the question: should Vertex be responsible for providing coverage, or should the Ministry of Health be able to include medications like Vertex in their formulary?
Zaharieva celebrated her birthday on Sunday, Feb. 25, but her goals for her new year are the same they’ve always been.
“To have Orkambi added to B.C.’s drug formulary,” she says.
“Well actually, if I could have my dream, it would be to have Canada implement a deal with Vertex,” Zaharieva continues, referring to the kind of deal that the Republic of Ireland’s government made with Vertex in 2017, “in which there is a set, affordable price for all medications coming out of Vertex.”
With the beginning of a new year, Zaharieva is hopeful — hopeful that her voice will finally be heard. She expresses gratitude continuously to those who have supported her, and to those who helped her raise the money to stay on Orkambi.
“The only reason I have the voice to fight is because my community came together and gave it to me,” she says.