Colm Burke (Cork North Central, Fine Gael) | Oireachtas source

My concern is that the Irish Haemochromatosis Association's figures indicate that at any one time up to 20,000 people have not been diagnosed. That is why we have the ongoing problem of people developing health problems and suffering organ damage, as the Minister and I have mentioned. Accordingly, why not have a national strategy and a screening programme that would identify people where an immediate family member has already been diagnosed? Much work could be done. There is a benefit to the person who has haemochromatosis but may not have symptoms. Protection is also provided to them in the form of ensuring people do not suffer long-term damage to organs like their heart or lungs. There would also be a huge saving to the health service itself.

As I understand it, the system set up in 2019 is not fully functioning across the country and we need more co-ordination between GPs, the HSE and especially the IBTS. There is a benefit for the IBTS, as part of the treatment involves taking blood from people and that blood is then available to be provided to our hospitals when they need it. That is an important part of this. While there is a cost factor in providing the service, there is also a benefit for the IBTS in getting access to blood, which is something that is required.

I ask that this matter be given priority. I am aware the proposal has gone into the NSAC. I hope it will come forward in the not too distant future with a proposal to adopt what is being suggested here. The Department should also become more involved in developing this strategy.

See this speech in context