“We have been working over the past number of years, probably almost two decades now, trying to get some form of rare disease strategy. We have finally come to a point where there is, in fact, a Canadian Rare Disease Drug Strategy, and it’s being implemented,” she said. “So, it’s definitely a much more optimistic tone and, I think, a more accessible space than it has been.”
The funding geared toward helping people access affordable drugs and adequate care has come not a minute too soon. Ashley Hickey, a mother of two and successful tech software business owner living with a rare disease known as Common variable immunodeficiency (CVID), knows firsthand just how important it is for people to be able to access affordable medications.
Between herself and her husband, close to 80 per cent of their gross income is spent on keeping themselves alive and well. Without adequate programs geared toward bringing in new medications or making the ones that already exist affordable for people like Ashley, her life is a constant battle to make enough money to survive.
“Essentially, I have to work a second job just to pay for the medications that are required to stay alive because, quite frankly, I can’t function,” she said, later continuing, “That’s the reality of rare disease, and they keep making these amazing medications, but who can pay for these things?”