A total of 25 children in the country suffer with spinal muscular atrophy. Sam and Glen both live in my area. It is a degenerative condition. There is hope for them and there is treatment called Spinraza. I have raised the question in the House before and I have been told that following the evaluation process it has not been approved.

If it has not been approved but is available in other European countries, do we need to review the evaluation process? Page 64 of the programme for Government commits to engaging with European partners to make these types of drugs available. Our partners in Europe have made it available but we have not.

While all this goes on, can we look at having a compassionate programme made available for these children?

I wish to speak on the same issue that my colleague has raised. I have written to the Minister for Health previously regarding the provision of Spinraza for children suffering from spinal muscular atrophy, more commonly known as SMA. I raised the matter previously in the Dáil along with other party members. It has been acknowledged by the HSE that the drug works well and that it is now solely an issue of cost.

Several of the affected families attended a demonstration at the gates of Leinster House in September. One of the families was from my county of Kilkenny. They are waiting in desperation for an answer on this drug. It would make a major difference to the life of their young son. Can the Minister provide an update on the provision of funding for this drug? Has the HSE scheduled any further meetings to discuss this drug? I have raised this before. We have mentioned it several times. We are being told that it is being looked at. It is now time for action not talk.

I have addressed this previously and I know Deputy Curran and Deputy Aylward have raised it numerous times previously. A decision is imminent but it is not a political decision. The Deputies opposite are well aware of that. It is an independent process underpinned by the law passed in this House. The decisions are not taken by the Minister of the day. They are taken by the HSE on the basis of a process to be gone through with the companies, which are charging vast amounts of money.

The amount of money we are spending on drugs is a serious challenge for the overall health service. It is a difficult process to get the balance right. We keep in the centre of that process the children who are impacted by this and the urgency to get the drugs.

Deputy Curran asked about a compassionate programme. That is something I will have to raise with the senior Minister. I will come back to him on that point and on the possibility of progressing something like that.

I appreciate the urgency attaching to this, as does the Minister for Health, Deputy Harris. We have to let the independent process come to what is a difficult decision to get the balance right between value for money, while ensuring the process is expedient and addresses the needs of these children.