Woman fighting for her life needs our help

Drug for cystic fibrosis patient costs $250,000 a year and she’s not covered

Re: “$250,00-a-year drug focus of insurance fight,” Sept. 21.

Imagine you (or your child) are experiencing a painful loss of physical functioning on a continually deteriorating basis.

Already, you have less than 40 per cent of your lung function, several of your organs are seriously compromised, and it takes you several hours of selftreatment at the start of every day simply to function.

Just 30 years old, you have lived with this diminishing capacity all your life. Things feel so desperate and hopeless that you find yourself exploring options for assisted death, and checking the cost of a one-way flight to Switzerland.

Then, out of the blue, you are offered a drug that can stop the deterioration, enhance your quality of life, renew your energy, give you hope and a future, and likely extend your life. Taking this drug, you are active, feeling joy again and being highly productive. But, suddenly, you are told your insurance plan is changing without warning, and this drug is no longer covered. You are devastated.

This is the true story of Lilia Zaharieva, who has cystic fibrosis and is one of my students at the University of Victoria. In 2016, doctors recommended Orkambi, a “wonder drug” for CF sufferers with her genetic makeup (Double delta F508). After several months on Orkambi, Lilia seemed a new person. Always a dedicated and keenly intelligent student, Lilia now had renewed energy and capacity.

In January 2017, I hired her to help me prepare a keynote presentation for 400 mental-health professionals in Norway. She had to meet with me every Thursday afternoon, and to analyze assigned readings. Between January and May, she missed only one meeting. This is remarkable, given her previous frequent infections and hospitalizations. Moreover, beyond being healthier, she contributed numerous insights and creative ideas to the research that are already being put into practice.

Lilia was removed from her stepfather’s care at age 14 and lived in foster homes until 19. She does not have a supportive family to help her through struggles, so she has become highly selfreliant, with valuable support from friends and fellow students. Over the years, Lilia has devoted much of her precious time and energy to raising money for CF research and supporting youth living with mental illness in their families.

She has won awards for youth leadership from the United Way and the B.C. representative for children and youth. She is a giver, and a committed citizen of Victoria, British Columbia and the world. She was a “poster child” for an international conference of the International Foster Care Organization, and presented to the delegates on her experiences growing up in care. It takes great courage and commitment to share your deepest pain in public.

Tragically, Lilia is living with an expiry date. A doctor told her recently that without Orkambi, she will need a double lung transplant in two to five years, an operation far more expensive than a year of Orkambi and with significant risk of organ rejection.

The catch is, the drug is expensive — about $250,000 a year. As a former foster child, Lilia does not have a family who can mortgage their house to buy her a few years of the precious pink pills. Experts want a randomized control trial to prove efficacy. However, there are logistical and ethical questions about such research. The population eligible for this drug is not large, a small subset of CF sufferers, and is it ethical to deprive dying people such life-enhancing medication?

Expert panels in Canada deem this drug to be “not cost-effective.” Why, then, is it available in Germany, Austria, France, Denmark, Luxembourg, Italy and the U.S.?

It will take time to negotiate the best price for Orkambi with Vertex, the drug manufacturer. In the meantime, why should Lilia and others in her precarious situation be made to suffer needlessly? Surely Vertex or the B.C. Ministry of Health can afford to provide immediate compassionate coverage pending a longer-term solution. The phrase “out of an abundance of caution” is used to justify significant actions not fully supported by evidence; we ought to extend this and “out of an abundance of compassion,” provide Orkambi.

We must ask ourselves: When is prolonging suffering and hopelessness cost-effective? What price a life? For years, Lilia has been giving to her community and to others in need of support. It is time for B.C. to step up and care for Lilia.