THE ESTABLISHMENT by the Government of a neo-natal screening programme for cystic fibrosis will have a major impact on the quality and longevity of Irish people with the disease, a leading international pioneer of the technique has said.
American expert Prof Philip Farrell said the establishment of a neo-natal programme in Ireland would lead to a marked improvement in the quality of life as it would help people suffering to lead healthier and longer lives.
Minister for Foreign Affairs Micheál Martin confirmed at the weekend that Government, which has provided €6.78 million for CF services since 2006, to is to provide an additional €1.6 million this year for the development of support services including neo natal screening.
“Progress is being made by the HSE on the introduction of a national screening service for newborns,” Mr Martin said. “The steering group is to be established later this year and will oversee the roll out of the screening programme.
“I look forward to the early introduction of this important service.”
The chief executive of the Cystic Fibrosis Association of Ireland, Godfrey Fletcher, warmly welcomed the announcement by Mr Martin at the association’s annual conference in Cork and expressed confidence that the new national screening programme would be up and running shortly.
Mr Fletcher said Prof Farrell had already met the HSE, the genetics unit at Our Lady’s Hospital for Sick Children in Crumlin and the Neonatal Screening Unit at the Children’s Hospital in Temple Street.
“They are confident once the funds are in place that the screening unit could be up and running very quickly and the fact that Minister Martin has confirmed the funding is excellent,” Mr Fletcher said. “We look forward to getting this operational as quickly as possible.”
Before delivering his paper at the conference, Prof Farrell, from the school of medicine and public health at the University of Wisconsin, explained how the introduction of neo-natal screening for the CF gene has had a huge impact on the lives of American CF sufferers.
“Instead of having to intervene with sick children that are diagnosed by the traditional method of a sweat test, what we are able to do is concentrate our efforts on keeping healthy children healthy – in our words, we have an entirely different and very successful strategy.
“In the traditional method of diagnosis, children with cystic fibrosis are diagnosed by a sweat test after they have signs or symptoms of the disease, so they are already sick, so you have to intervene with nutritional therapies and respiratory therapies.
“With newborn screening, babies are diagnosed in a very healthy state. The lungs of CF patients are normal at the time of birth and they are well-nourished at the time of birth and the aim is to keep them well-nourished so the results of care are much better with early diagnosis.”
Prof Farrell said the difference for the adult patient who is screened at birth is striking with such patients growing stronger and healthier. In the US, the average longevity of such patients is projected to be 50-60 years as opposed to 35 years for those not screened at birth.
It also emerged at the conference that Minister for Health Mary Harney has agreed to meet CFAI officials on Thursday to discuss plans to try and secure private-sector funding for 30 en suite rooms for CF patients at the national tertiary treatment centre at St Vincent’s hospital in Dublin.
