Cystic fibrosis patients and their families are calling on the Government to honour its pledge to give them new hospital facilities, warning that the cost of the project is rising as the delay drags on.
Estimates for the 20-bed in-patient unit at Beaumont Hospital in Dublin have risen by almost 10% in the last year from an initial price of €11m to the current costing of €12m.
Philip Watt, chief executive of Cystic Fibrosis Ireland (CFI), said concerns were now growing that if it was not built soon, it would become too costly.
"If things continue as they are, soon it will be €13m and then €14m and what was a project that was manageable financially at the outset will be considered too expensive and get long-fingered indefinitely," he warned.
The unit was promised in 2016 but no progress on the project followed and CFI was gutted to discover late last year that the investment was being postponed due to the overruns in the National Children's Hospital.
A special CFI fundraising day on Friday, April 12 will aim to raise the €1m that has already been added to the cost of the project.
The '65 Roses' Day is so-called because it is what many young patients call cystic fibrosis when they first grapple to pronounce it. Purple roses will be on sale throughout the country and the public will also be able to donate online at 65RosesDay.ie.
Around 1,400 children and adults in Ireland have cystic fibrosis - the greatest concentration in any country in the world - and there is one new diagnosis every fortnight. After a long battle, campaigners succeeded in getting a specialist unit at St Vincent's Hospital in Dublin, and Crumlin Children's Hospital now also has a dedicated unit but Beaumont is still struggling with outdated facilities.
We are looking for workplaces to sell Purple Roses for €2 on #65RosesDay. Please help us help people and parents with children living with CF in Ireland. Contact us at 01 496 2433/ firstname.lastname@example.org or visit https://t.co/Jm0ZEGNJ6B for more! pic.twitter.com/YNHMblY3Do— CF Ireland (@cf_ireland) March 18, 2019
"They're run-down, they're overused and there are only seven beds when we need 20," Mr Watt said. One of the reasons demand for the services is high is that people with CF are living much longer thanks to new drugs and better care.
Six-year-old Alfie Dardis from Stepaside, Dublin was diagnosed at five weeks old and his mum, Gemma, said that with new drugs and expert physio and dietary support, he was hospitalised only about once a year.
Having said that, he was admitted last Thursday for a two-week course of IV drugs to treat an infection, but even then, he was allowed out briefly for the photocall for 65 Roses Day and was able to escape for a few hours to get some therapeutic sea air in Bray on St Patrick's Day.
"We've been very lucky with the care he's had and we know there are advances in treatment all the time but he will be transitioning to adult services beginning when he is about 14 and I want to be sure that he'll have all the services he needs as a young adult when he starts being responsible for his own care and I'm not advocating for him any more," Gemma said.
CFI is also calling for the Government to immediately introduce an 'opt out' for organ donation which would presume everyone is an organ donor unless specifically informed otherwise.