Putting a price on life

RadioScope: Outside the Box RTÉ 1, Tuesday

The most shockingly cruel statistics of the week were heard on Outside the Box, RTÉ 1, Tuesday. The programme focused on cystic fibrosis (CF) and listeners learned that in the US, a person born with CF in the 1990s can expect a median age of death greater than 45. Here, research figures from 2000 showed that the median age of death is just 17. Over the border in Northern Ireland, CF sufferers can expect a median age of death of 34. As Godfrey Fletcher from the Cystic Fibrosis Association of Ireland made quite clear, it's not that the air is somehow more rarified in America or that there's a different strain of the disease just beyond Dundalk. The reasons why Irish CF sufferers are so short-changed in the Republic is down to the availability of services - money, in other words.

As Fletcher succinctly put it: "We have the highest incidence of CF, with the worst services in the developed world." And that's the whole point. CF isn't some obscure condition that affects a tiny percent of the population. For some reason that geneticists don't quite understand, the occurrence of CF in Ireland is the highest in the world.

Dr Charles Gallagher, a specialist in the area, explained that one in 20 people carry the gene and it is the most common inherited potentially fatal disease in Ireland. At any one time a massive 12,000 people in Ireland are living with the condition and on presenter Olan McGowan's lively panel was 30-year-old Dubliner Darragh McGrath.

His life affirming philosophy was simple. As someone who lives with a condition that he knows will make his life shorter, he long ago made the decision to stop worrying about it and just live. "There's more to life than physiotherapy, nebulisers and pills," he said. Of his four siblings, three were born with CF - one brother died shortly after birth. His family is an example of how complex the condition is. As Dr Gallagher said, it affects every person differently. For Darragh, the main problem is to do with his lungs, he has breathing difficulties and a build-up of mucus. For his brother, the problem is more related to digestion.

A baby's inability to put on weight is often the first indication that CF might be the problem. McGowan asked Darragh how soon after the birth of his younger brother were his parents made aware of his CF condition. "A few hours," he said, "Mammys always know." He went on to explain that a characteristic of babies with CF is particularly salty, clammy skin and that many a mother kissing her newborn has realised straight away what is ahead for her and her baby. A sweat test is part of clinical diagnoses.

There have, according to Dr Gallagher, been great strides in medical treatment. In the past it was mainly a disease of children but now Dr Gallagher's oldest CF patient is 69 with, and in his experience, an average life expectancy of 31 to 32 years. Many people, he said, live beyond that.

"Basically if we get the services right, we can keep our membership base healthier for longer," said Fletcher of the CF Association.