Michael Healy-Rae (Kerry, Independent) | Oireachtas source

I welcome the introduction of this Bill. It is very important. I want to raise a couple of items. I thank the Minister of State for coming to County Kerry recently. His trip was well received and I appreciated it even though he and I, personally, have differing views on congregated settings. We are men enough to appreciate each other's positions. I thank him very much on behalf of all the people in Saint Mary of the Angels, for taking time out of his busy schedule to go there. I want to acknowledge in the House that his trip was welcomed by everybody.

I want to use the few minutes I have to put on the record of the Dáil, and I am grateful for the work the Minister of State is doing in trying to set it right, that in County Kerry, families of people with a disability, and especially children with a disability, need respite care provision. In County Kerry there is crisis in respite care provision. At a public meeting a lady who has a child with special needs spoke out and said a shocking and horrifying thing. She said, "I hope to God that my child will die before me". I will not identify the person, but she felt that she needed to say it as she did not want to leave her child behind. This lady believed that the services are not being provided and she wanted to see that her child would be gone out of this world before she was. That is a shocking thing for anyone to have to say. I publicly stated at that meeting, and I shall do so again on the record of the House, that I would come back to Dublin, go to the Minister of State, Deputy Finian McGrath and tell him this story. I know he is aware of it and he assured me that he would do his best with the people in his Department to try and put it right. I beg him to provide the proper respite care services. I saw people at that meeting and could see from their faces that they are worn out. They have been driven down to the ground trying to take care of their loved ones without a break. I know the Minister of State will take this on board.

I hope the Leas-Cheann Comhairle will allow me the indulgence to say this in that there has been breaking news in the last couple of hours. The Alpha One Foundation was disappointed to learn this evening from the Minister for Health, Deputy Simon Harris, that the Government will not enter into negotiations to agree a reasonable compromise on the price for Repreeza. I raised the issue last week with the Taoiseach. People are suffering from an illness and they need this drug. It is expensive but the foundation is at a loss as to how the Minister for Health cannot recognise the clear benefits of this drug therapy as evidenced by the patients who have been receiving it for over a decade. The Alpha One Foundation welcomes the decision, however, of CSL Behring - notwithstanding the Minister's stated position - that it will provide the therapy for an additional two months to allow further discussions to take place.

Let us be clear that these are people who have a very debilitating illness affecting their lungs. Twenty people are availing of this therapy. I admit that it is expensive but if they do not have the therapy they will die. This information only came out this evening and with the Minister of State here, I wanted to put it on the record. I know he will relay it, in his own good time, to the Minister for Health. It is so important for those 20 people. As I have said, their lives are as good as my life, the Minister of State's life or that of anybody else. Money should not come into it. Of course we must be prudent with taxpayers' money, and the Minister for Health has to get the best deal possible from the drug companies. I respect that the companies also must make their money but surely to God, on compassionate grounds, some deal could be brought about between the HSE and the drug company on this very important issue.

I will now return to the Bill. Some people can say it is late in being introduced. I recall the day the Minister of State, Deputy Finian McGrath, was in County Kerry. He said that he was disappointed it had not been brought before the House and that it had not been his fault. It is here now and we appreciate that it is now going through the House. Trying to do everything we can for people with disability, trying to make their lives better, trying to ensure their safety and their rights and tying together all the legalities contained in this Bill, is very important work and we all have to put our shoulders to the wheel.

I will make way now for my colleague but my final word is on respite care with regard to people with a disability or special needs. At the public meeting in County Kerry, peoples' anger was not a cross type of anger, it was an upset anger, about the lack of resources for taking care of these very special people. It is shocking. Many people with special needs were at the meeting and they realised the pressures this is putting on their families. I ask that the Minister of State does everything within his power to address this. At the meeting I said that if anybody would understand the issue, take it on board and try to ensure we have adequate funding for County Kerry, the Minister of State, Deputy Finian McGrath would try to. I ask that he please deliver on that because I told them I would do my best. I am pleading with the Minister of State on behalf of the people of County Kerry who need respite care beds for their children and I hope he will try his best to meet their needs.

I thank the Leas Cheann Comhairle. I believe he owes my colleague a couple of minute's injury time also.

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