What is Cystic Fibrosis?
Cystic Fibrosis is a chronic, life-limiting illness that affects the whole body, particularly the respiratory and digestive systems. It causes the body to produce unusually thick, sticky mucus that:
- clogs the lungs, leading to life-threatening infections; and
- obstructs the pancreas, stopping natural enzymes from helping the body break down and absorb food.
People with CF have a gruelling daily routine of nebulised medications, chest physiotherapy and exercise to try and clear this thick mucus from their lungs. They live with breathing difficulties, persistent coughs, poor digestion and reduced life expectancy. Not to mention the elevated anxiety caused by these relentless symptoms and treatment regimes.
CF is a progressive illness for which there is currently no cure. The predicted median age of survival for a person with CF in Ireland is in the early to mid-30s, but many lives are still stolen much earlier than this. Hope comes in the form of Orkambi – a breakthrough medication that actually treats the cause of CF for people with Double Delta F508, the most common form of the illness. Orkambi has the potential to completely transform the lives of these patients.
How can Orkambi help?
- Orkambi treats the underlying cause of CF in people with two copies of the Delta F508 mutation. Approximately 60% of Irish CF sufferers fit this profile.
- Orkambi is not a cure, but it is a huge breakthrough for people with CF because it treats the cause, not just the symptoms.
- In trials, Orkambi has been shown to reduce exacerbations and hospitalisations by up to 40%. It has also been shown to reduce antibiotic usage, increase weight gain and improve lung function. Patients have also reported an improvement in mental health and quality of life.
As Ireland has the highest incidence of Cystic Fibrosis in the world, we should be leading the way in CF healthcare. But by refusing to fund this drug, we have completely lost our way. We need to convince the Government to move from no to #YesOrkambi.