Martin Conway (Fine Gael) | Oireachtas source

This is the second health matter I have raised that has not been addressed by a Minister from the Department of Health. It is a consistent problem with one Department which needs to be dealt with. Here's hoping because I know the powers of persuasion of the Cathaoirleach and his ability to get things done. This issue needs to be sorted.

I am raising the issue of haemochromatosis which affects one in 83 people in Ireland. Furthermore, one in five people is a carrier. Despite this, there is no national screening programme or national strategy. For the people affected, this is a lifelong condition. It is not considered a long-term illness when it comes to payments, long-term illness cards, etc. What is more frustrating than anything else is the fact that there is no consistency between the hospital groups. Some hospital groups do not charge for doing the basic necessary treatments for people with haemochromatosis whereas others do.

To put it in simple English, haemochromatosis is where people have too much iron in their body and a quantity of blood has to be removed to balance the iron. This job should be done by the Irish Blood Transfusion Service, IBTS, but it is not. I fully accept that, for various reasons, not everyone's blood can be accepted. I believe, however, that the IBTS should cover the cost of this service. We need to make the service universal and uniform. What happens in Dublin should happen in Clare and what happens in Cork should happen in Donegal. There should be no differences. That is what creates inequalities in healthcare.

We urgently need a national strategy to identify and deal with people who have haemochromatosis. We need a five-year plan and also a longer term plan. We need to create equality in access to care. We also need an information campaign. There are thousands of people who have the condition but do not even realise they have it. That is not good enough. We need a national screening programme and national information campaign to identify people with the condition.

Outside of the medical profession and those who suffer from it and their families, haemochromatosis is not a widely known condition but it should be. Every parent and carer should know about it. Some GPs provide supports and services while others do not. There needs to be an engagement with GPs in order to create a database of those who do and do not provide services. We also need to encourage the ones who do not provide the services and supports to do so.

We need three things, a national strategy, a national screening programme and an information campaign.