Recently, while watching Global news, I came across a video that showed a girl that my wife babysat almost 30 years ago. This girl had cystic fibrosis and we were told at that time she may not live to see her 30th birthday.
We moved from Salmon Arm in 1988 and had seen the family off and on and then we lost contact with them.
As I watched the clip, the girl’s name came up as Melissa Verleg. I wondered if this was the little girl my wife babysat. I watched and when they showed her face I began to cry as I knew this was the same little girl. I phoned her right away. I conversed with Melissa for more than half an hour. She explained to me how her life has been a lot better since she has been on Orkambi. She has been able to play and make meals and spend quality time with her family. She also told me she has enough Orkambi until the first of the new year and then her health will deteriorate to the way she was before she started taking the Orkambi.
In the last month I have seen the government pay for two medications costing more than what Melissa is asking for. I understand that CF is not a disease that can be cured, but if it makes her quality of life better for the next four to five or even 10 years, would that be such a waste of money?
Please consider her long, hard fight and give her the medication she deserves.
I do not believe she needs to fight for every breath. She has been fighting for every breath since she was young. If this drug is working, I for one think she should be covered by the B.C. medical system.
Morley and Kim MacKay