Politicians urged not to dash CF sufferers’ hopes

Don’t dash the hope people with cystic fibrosis now have for a better quality of life, Ireland’s newly elected politicians have been urged.

Cystic Fibrosis Ireland wants the next government to tackle major staffing shortages in CF centres and ensure access to ground-breaking drugs .

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

Ireland also has one of the most severe manifestations of CF because of the particular genotype prevalent here.

Two of Ireland’s top broadcasters, Keelin Shanley and Bryan Dobson, are supporting this year’s 65 Roses Day that takes place on Friday, April 15.

The charity is hoping to raise €65,000 for much-needed services for people with CF, including patient support grants for transplant assessment and counselling, research, and new healthcare facilities.

Cystic Fibrosis Ireland chief executive, Philip Watt, said that, despite coming from a very low base, much progress had been made in improving CF care in Ireland in the past three years.

He says the next government must ensure staffing at CF centres met European standards — some were 20 short of what they should be.

And, with more people living with CF than every before, it was crucial the HSE ensured that staffing levels were adequate.

Mr Watt said there are still centres with inadequate inpatient facilities — Beaumont Hospital in Dublin only had seven in-patient rooms — 20 are needed.

There is also uncertainty as to whether the HSE will pay for Orkambi, a new drug that could transform the lives of half of the CF population in Ireland. “We are in a period of real hope for people with CF for the first time — let’s not put that in jeopardy now,” said Mr Watt.