Babies not screened for cystic fibrosis

NEWBORN babies are not being screened for Ireland’s most common life-threatening inherited disease, unlike in the North and the rest of the EU.

Cystic Fibrosis affects one in every 1,500 births. It attacks the respiratory and digestive system and leaves patients prone to frequent infections and malnutrition.

The average life expectancy is 21 years in Ireland compared to 30 in the North and in Britain.

The Cystic Fibrosis Association of Ireland (CFAI) said sufferers could be treated immediately if they were diagnosed as soon as possible after birth.

CFAI Medical Council chairman Dr Charles Gallagher said the Department of Health had approved screening in principle but it had yet to be implemented on a practical basis.

“Screening detects people at an earlier stage so treatment can be more effective before they develop major symptoms,” he told the Oireachtas Health Committee yesterday.

“But it is something that needs to be organised on a national basis so that we can have the appropriate follow-on treatment,” he said.

“It is a simple test with results available within a few weeks. It is carried out in Northern Ireland, in the UK and Europe.”

Labour health spokeswoman Liz McManus said it seemed extraordinary that cystic fibrosis was not one of the checks carried out on newborn babies in maternity hospitals.

Children with cystic fibrosis are usually diagnosed before the age of five, although three people in the last year were diagnosed in their 40s.

“Screening is only practical if we have the facilities to treat them once they are diagnosed,” Dr Gallagher said. “Right now we do not have the necessary people or the infrastructure to treat those people.”

Mild cystic fibrosis sufferer, Rory Tallon, 34, told the committee: “I’d be frightened to go into hospital at the moment with the level of cross-infection and the lack of single cubicles within the hospitals.”

He said that during recent visits to hospital, he was placed in a diabetic ward where one of the patients had MRSA and he spent 12 hours in A&E on another occasion.

Galway East TD Paddy McHugh said it was most alarming that there was severe under-staffing in services for cystic fibrosis sufferers.

“There is a lot of goodwill out there towards CFAI, but goodwill isn’t worth a damn really,” he said.