A time for the Cystic Fibrosis community to celebrate…

Today I’ve had news that NHS England has reached a deal with Orkambi manufacturers Vertex Pharmaceuticals after months of talks.
This was brought to my attention through the Cystic Fibrosis (CF) clinic I attend after it was announced on BBC News (see link).
CF is a genetic disorder that affects mostly the lungs, but also the pancreas, liver, kidneys, and intestine. Long-term issues include difficulty breathing and coughing up mucus as a result of frequent lung infections.
The effects of CF reduce the quality of life of patients as they age and whilst over the years the quality of life and average life expectancy has improved due to advancing treatments, the research into new treatments will always be ongoing that will eventually see CF being cured.
Orkambi is currently the closest to a cure for CF. Though until now has been offered to patients on compassionate grounds. Either as a result of a drop in lung function or as a result of volunteering to take part in an Orkambi related drug study.
I’ve been taking Orkambi since January 2017 on compassionate grounds after taking part in a drug study.
Within a week commencing the drug, I found I was able to breathe easier and the first month saw a vast improvement with my endurance. Now my endurance is back to how it was 5 years ago.
You can say today’s news has been a huge welcome and something worth celebrating about.

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