CF sufferers are unlucky to be born Irish

Is there anything more this Government has left to do that can shock us? Is there much they can introduce next Tuesday that will horrify us as much as the heartless decision this week to kill the little bit of hope that lay in the hearts of cystic fibrosis sufferers and their families? For such people, life is a constant struggle against death. Every shower of rain, every dark cloud, every sneeze, every shared waiting room is a potential killer.

CF is a terrible condition, borne bravely by many many people in this country. Our perilous position living on this mid-Atlantic rock we call a modern state ensures that its incidence is very high and its treatment very low.

In order for their life to be prolonged and the quality of it to be made bearable, CF sufferers strive to exist in a world free of infection, free of cold, and damp, of anything that can attack their weakened organs.

One would think that there is little we can do to combat such conditions, living where we are, but the reality is shocking.

CF sufferers in Ireland expect to live as long as 16 years of age. That is a shocking and saddening statistic, but when you add to it that CF sufferers in Northern Ireland can live to 26, and that Swedish and Canadian sufferers can live to their late thirties, then you realise that something is very very wrong in this country. And we can’t just blame the weather.

As I write this, there are CF sufferers in hospital rooms across the country, living a life of constant fear that their system will be attacked by infection. I know of several who sit in hospital rooms ironically for their well-being in an area where infection lurks around every corner. Those who care for them do so brilliantly, but they are not backed by the resources that would make them offer the treatment that can give all of their patients another 20 years of life.

What is needed is what is available in other countries — specialist infection-free units kept well away from the mainstream patients. What is needed is a realisation by Government that CF sufferers need special conditions if they are to live longer. That specialist reduced taxi fares would allow them to use public transport without being in an infection crowded buses.

The confirmation this week that the proposed new accommodation unit for CF patients at St Vincent’s Hospital in Dublin has been long-fingered is devastating and confirmation that the Government and the HSE does not care about them. The dilly-dallying about this project has been disgraceful. Even offers from the private sector to build it have been met with resistance.

See the letter from an angry parent in our letters page on page 88 and feel for yourselves the despair that this decision has driven into hundreds of families up and down this country. This confirms that the future for their loved ones is even bleaker than they could have imagined.

It is only recently that the profile of CF has risen in this country with the elegant and brave testimony of patients like young Orla Tinsley, who has highlighted the ongoing frustration and anger of CF sufferers. She articulates brilliantly what this decision means — an early death for herself and her fellow sufferers.

Perhaps if as much effort was put into this cause by the Taoiseach, his cohorts, and his spindoctors as was put into trying to get the national broadcaster to apologise for carrying a news story about a satirical cartoon; perhaps if as much lobbying was made by the HSE to the Minister as was done to ensure that executives’ bonuses were paid; perhaps if the Government gave off an attitude other than one that has “I couldn’t be arse-ed” written all over it. Perhaps, then there might be a chance that CF sufferers who are frightened, crying, but brave tonight will have a hope of living not just into their late teens, but would enjoy the joys of their twenties, and the thrills of their thirties at the very least. Give them the chance of life and reverse this decision, a decision that condemns them to death because they are Irish. So what if the rest of us have to cough up a few quid a year to pay for it. Do the right thing and do it now.

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