The vast majority of Irish people with cystic fibrosis have seen their condition worsen over the past year, a new study shows.
More than one third of those living with CF spend at least three hours a day completing their treatment, according to a survey conducted by Cystic Fibrosis Ireland.
Speaking at the CF annual conference in Sligo last night, CEO Philip Watt, said: “Our survey shows 89% of adults with cystic fibrosis have had an exacerbation, a worsening of their condition, requiring treatment in the past 12 months.”
He called on the Government to make a new drug, Orkambi, available to those with cystic fibrosis.
“Orkambi has been shown to reduce exacerbations and hospitalisations by up to 40% for those eligible to take this drug — or about half of the patient population,” Mr Watt added.
“The potential of a drug such as Orkambi also means less time spent on day-to-day cystic fibrosis management and more time for people with cystic fibrosis to get on with the rest of their lives.
“While there is an additional treatment cost in the short-term, there are savings arising in other areas of cystic fibrosis-related care with reduced hospitalisations and people able to contribute more fully to society in jobs.
“Just last January we handed a petition signed by over 40,000 people to [Health] Minister Varadkar supporting access to this drug. We would urge Government to hear our call and enable people with cystic fibrosis to live their lives to the full.”
The National Centre for Pharmacoeconomics (NCPE) is currently assessing the drug, Orkambi.
Cystic Fibrosis National Awareness Week takes place this week – April 11 to 17.
The highlight of Cystic Fibrosis National Awareness Week is the 65 Roses Day fundraising appeal, taking place nationwide on Friday next.
The charity is hoping to raise €65,000 for much-needed services for people with cystic fibrosis, including transplant assessment, support grants, counselling, research and new healthcare facilities.
There are around 1,200 people with cystic fibrosis in Ireland, and the country has the highest rate per head of population in the world. One in 20 people are carriers of the cystic fibrosis gene.
In addition, Ireland has among the most severe manifestations of cystic fibrosis because of the particular genotype prevalent here.
Where two parents are carriers, there is a one-in-four chance their child will develop the condition
People with cystic fibrosis are constantly prone to chest infections and malnutrition
See the Cystic Fibrosis Association of Ireland website for more information: www.cfireland.ie
