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Volunteer Advocate
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Advocacy in Action: Abby

Starting our Advocacy in Action series is the story of 25-year-old B.C. resident, Abby. Both Abby and her twin sister Simone have cystic fibrosis (CF), and they have coped with the effects of the disease throughout their lives. Abby recently gained access to OrkambiTM, and it has made a positive difference for her.

”My lung function is 35 per cent, meaning that at my best, I am working with only a fraction of what a person without cystic fibrosis can expect. I can expect my lung function to decline even further over the course of my lifetime. If I’m lucky, I’ll make it to 35 years of age without needing a lung transplant. For Simone, this will likely be sooner. This is the nature of the disease. For some the decline is slower than others, but it always happens. CF is always fatal, it is always degenerative, and there is no cure.”

“There are medications to treat my symptoms. Enzymes help me digest food that my insufficient pancreas cannot handle. Fosomax helps me retain bone density from my CF-related osteopenia. The primary defense against lung infections is antibiotics. I take inhaled Cayston every other month, and when I have an exacerbation I usually take oral ciprofloxacin. If oral drugs fail, I am hospitalized for intravenous antibiotics. Bacteria eventually become resistant to antibiotics, and this increasingly becomes a problem for most people with CF as the disease advances. Some of the bacteria in my lungs have already shown resistance to ciprofloxacin.”

WHAT ORKAMBITM HAS DONE FOR ME

“[OrkmabiTM] has been proven to reduce exacerbations, which means fewer antibiotics, less frequent hospitalizations, and weight gain, among other benefits. It is an expensive drug, but the long-term savings it would create for the healthcare system outweigh the initial cost.

These benefits are not hypothetical for me. I have been granted compassionate access to OrkambiTM due to my poor lung function, and I have noticed the positive effects discovered in the study. I am coughing less frequently, when I do cough it is far more productive, my sinuses have completely cleared up and I can now speak to my coworkers after walking up three flights of stairs without needing to hide out in the back room to cough first.

It is disheartening to imagine the number of people with CF who cannot access this medication. Plenty who need it cannot get compassionate access because their lung function is not low enough. If they were able to access the drug through provincial health plans, this would not be an issue.”

OrkambiTM has the potential to change the lives of many people living with CF, but even some of those lucky enough to have private insurance are currently not able to get this medicine.

Abby and our community are asking the drug manufacturer and government  work together to ensure everyone who needs this medicine gets it.

For more information on our advocacy efforts, visit cysticfibrosis.ca/advocacy/raising-our-voice.
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