It is with regret, disappointment and sadness that I must again raise the issue of Spinraza. Twenty-five children have been identified as suffering from spinal muscular atrophy, SMA. We fought a hard fight here and four months ago the HSE approved the provision of Spinraza for those children. When I went back to Kilkenny, I informed a family there that the drug was approved by the HSE following lobbying by this House and I saw the delight on the faces of the parents and grandparents. Four months on, not one thing has been done for the children. Twenty-five children are waiting for Spinraza to improve their quality of life, yet nothing has been done. What is wrong with the system? What is wrong with the HSE? The drug has been approved and was due to be handed out. That was the expectation of 25 families in this country but they have been left high and dry. They are waiting for an improvement in the quality of life of their children. Something must be done about this immediately.

Twenty-five families are waiting. One family in particular came from Youghal to the gates of Leinster House and they were in contact with me recently. The HSE approved Spinraza in June, the Minister welcomed that in July, but the families still have not got it. Some of the families have contacted me and asked me if I could get a final date for when this vital medicine will be provided. All people want is clarity on what date they will have some relief and solace for their families.

Isaac Brennan was here with the Minister in the course of lobbying for the drug in question. A commitment was given that treatment would be started once the drug was approved. The drug has been approved but the treatment is being delayed. I understand there is a need for investment in personnel and infrastructure at Temple Street Hospital. Will the Tánaiste investigate the matter and ensure that young people like Isaac Brennan are given priority and that the commitment given by this House on Spinraza is honoured?

This is a matter we raised in the House on Tuesday of this week. It was taken at the time by the Minister of State, Deputy Jim Daly. To be honest, the response is not what we expected. It was quite poor. The HSE stated:

Application for approval is based on clearly defined criteria and follow these guidelines: the number of individuals treated and their commencement on treatment is as per the clinical guideline. All patients that have been recommended clinically for treatment have been approved to date.

That does not answer the question. The parents are telling us that not one of the 25 children that we have identified and with whom we spoke in June of this year when the drug was approved has received the treatment to date. The answer is appalling. It is a disgrace. We have simply asked if the Minister could indicate when the children are likely to be treated. There is a suspicion that the budget for the drug does not exist this year and the Department is trying to delay it until next year's allocation. Is that the case?

It is shameful that we find ourselves having to rise on this issue once again here in this Chamber. After a concerted effort by a collective of different voices across this House, we reached a point where approval was announced, yet here today, several months later, we are asking once again in the context of nothing having been done in terms of these families and those children's access to this very important drug. I urge the Tánaiste to raise this matter with the Minister and to come back to each of the Deputies to advise us exactly when this programme will commence.

As Deputy Curran outlined, the issue was raised on Tuesday on Leaders' Questions. I did seek a response from the HSE on Tuesday to provide an update to the Deputies. On Tuesday the response I gave was to Deputy Gino Kenny and Deputy Curran. I accept the response is not satisfactory and I have asked for further clarity from the HSE, for it to give an exact date for when the drug will be available, and to be more specific for the parents of the patients involved. That was yesterday. As soon as I have a response I will circulate it to the Deputies.