Cystic fibrosis scandal


IRELAND HAS the highest incidence of cystic fibrosis in the world and yet, in spite of such exposure to this lethal condition, patients here may die 10 years earlier than their counterparts in Britain and the US. It is a public scandal that has been allowed to fester for decades and it all comes down to issues of cost, medical treatment and hospital care. Even now, there is no certainty the promised hospital facilities that are so desperately needed will be provided on time. The Government, the Minister for Health and the Health Service Executive (HSE) have all failed in their duty of care to vulnerable citizens.

Last year, following intensive political lobbying and some courageous individual campaigning by Orla Tinsley, Minister for Health Mary Harney and the HSE promised to build a new 120-bed facility, with 30 en suite rooms, at St Vincent’s hospital in Dublin by 2010. Last month, following a reduction of 26 per cent in its capital budget, the HSE announced it didn’t have the money to go ahead and that construction would be delayed until “at least 2011”. The ensuing public uproar and criticism from the Opposition parties caused Ms Harney to examine whether the facility could be funded in a more innovative way. And the outcome may be positive.

It is too early, however, to applaud a victory for the Cystic Fibrosis Association and its members. A new funding scheme outlined by the Minister for Health is so dependent on builders and bankers that it may never go ahead. Ms Harney said builders would be asked to tender for the project on the basis that they would not be paid until the facility was completed, in about two years’ time. Borrowing costs would therefore have to be factored into the price and banks may be reluctant to extend such a facility. Payment would also appear to coincide with the HSE’s estimation of when funds may become available.

Only last month, HSE chief executive Brendan Drumm told an Oireachtas committee that, rather than focus on building a large hospital facility for the treatment of cystic fibrosis, the emphasis should be on caring for patients in their own homes. In the best of all possible worlds, that would indeed be the optimal solution. But Prof Drumm knows that cystic fibrosis patients only attend hospital when they are seriously ill and home care is no longer an option. He should not have engaged in political spin. Cystic fibrosis patients are not the only ones fearful of contracting life- threatening infections in dirty hospitals. But, at a minimum, they deserve a clean new facility.