Approve life-saving medication for Lilia Zaharieva and others with Cystic Fibrosis
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To many it would seem that Lilia has beaten the odds. She was born with Cystic Fibrosis, a debilitating illness that makes it so that her lungs only operate at 39% of their capacity. Despite this, she is a fourth year student in Child and Youth Care at UVic and has worked as an advocate for children in foster care.
This disease affects every aspect of her life. Until being given access to Orkambi, it led to her spending weeks in the hospital trying to fight the symptoms and infections caused by this illness. Orkambi is a drug that has been approved by Health Canada and is widely supported by specialists in Cystic Fibrosis. The pan-Canadian Pharmaceutical Alliance however, has ruled that this drug does not lead to a large enough increase in the quality of life for those who take it to justify the price tag. Therefore, the province of British Columbia will not include the drug in the Fair Pharmacare formulary. This is in direct opposition to the stance that specialists in Cystic Fibrosis have taken, who have endorsed the drug.
Lilia is living proof study that this drug does in fact substantially increase a patient’s quality of life. She credits Orkambi for allowing her to live her life, become a greater part of her community, and start hoping for a future where she might go to grad school.
The University of Victoria Students' Society is a membership-driven organization that strives to advocate for all of our members, including Lilia. For Lilia, time is running out. She is quickly reaching the end of her access to Orkambi. If she is unable to get more, the positive effects of the drugs will quickly disappear. The province of British Columbia and Orkambi need to begin negotiations so the drug can be adopted under Fair Pharmacare as other countries have done. Lilia is not alone. This drug has proven beneficial to others in this province and could enable future students living with Cystic Fibrosis a chance to live to their full potential and realize their dreams.
Find out more about Lilia's story: https://www.facebook.com/lzaharieva/posts/10100849625192326
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