Majority of cystic fibrosis patients have seen condition worsen

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 in advance of the charity’s National Awareness Week which begins on Monday.

“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,” said CEO Philip Watt who 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.”

One of the keynote speakers at the conference, Dr Eddie Murphy, clinical psychologist and RTÉ Operation Transformation expert, said those with the condition exhibit resilience and tenacity in coping.

“We know that people with cystic fibrosis are extremely resilient, which perhaps comes with the huge amount of personal responsibility in taking care of their health and looking after themselves from an early age,” he said.

“While clearly aware of the realities of life, and of coping with the challenges that they face, people with cystic fibrosis do not go around with a cloud of doom and gloom over their heads.

“Rather they have an inner strength which they marshall to focus on living and I look forward to exploring further that emotional resilience during the conference. We could all do well to learn a lot from their character, tenacity and determination, and sense that life is for living.”

The highlight of Cystic Fibrosis National Awareness Week is the 65 Roses Day fundraising appeal, taking place nationwide on Friday next.

There are around 1,200 people with CF in Ireland, and the country has the highest rate per head of population in the world.