There has been a flurry of pre-election funding announcements coming at us every day, many for the benefit of groups that have been campaigning for many years.

Is the Deputy happy about that?

There is nothing like an election to concentrate the minds in a panicky Government. In that context, I suppose, timing is everything. In real life, time is everything, particularly for the 25 families whose children are suffering from spinal muscular atrophy, SMA. I have spoken about this on many occasions in the Dáil. This week there were some substantial developments, although unfortunately none of them occurred here. Every day counts for these families and every sufferer of SMA. It has been medically proven in virtually every country in Europe bar two - one of which is Ireland - that Spinraza is a drug that gives time and opportunity to those who suffer from this awful condition. Before the drug existed, they had no such opportunities but Spinraza has proven to be a miracle drug in every sense of the word.

I first raised this matter on 20 September, which is now eight months ago. At the time, the Tánaiste sympathised with the children and families, and he may have met them subsequently. He said this was a priority but nothing has happened. I raised the issue again on 13 December, which is five months ago, and on 28 February, which is three months ago. Deputies John Curran, Stephen Donnelly, Lisa Chambers and other Deputies from all sides of the House, including Deputy Ó Caoláin, have raised the topic consistently because timing is everything. I do not lay out those dates to seek some sort of credit but rather to demonstrate the importance of time and what eight months, five months, three months or even three days would have meant to these sufferers if they had access to the drug.

The families have been told time and again that this is a priority and the matter will be dealt with but time and again they have been let down. They were let down last Tuesday as they had been told the matter would be discussed and decided on 14 May but that decision has been kicked down the road. They were let down again on Wednesday when they found out that the National Health Service, NHS, in the UK has approved an access programme for Spinraza and those who need it in the NHS will have access to it. The 25 families here, as well as the adults who need Spinraza, will not get it. When I mention 25 families it may take away from the fact that these are real people. They are Grace, Cillian, Sam and many other children and adults who are going through hell. They are suffering from the condition and the families are dealing with that trauma but now they must deal with this issue as well. I implore the Tánaiste to look at Facebook when he gets the chance to see the testimony recorded on Tuesday by Grace O'Malley when her family got the news that the decision on the drug had been kicked down the road again.

This is enormously frustrating for all of us as there is cross-party agreement on the matter. I know the Government wants to make this happen but we are impotent because some body that does not have to answer to anyone is playing with these families' futures. We in the political system must take charge. Will the Tánaiste please update us on the position with Spinraza? Why, once again, has the decision been postponed? Why do Irish children have to be deprived of this when children across Europe can access the drug?

Like the Deputy, I want to provide certainty to the families feeling the impact of this. I met one of those families and its members were incredibly dignified and very frustrated by the fact that the child in question cannot access a medicine that could make a major difference in the quality of her life.

The Deputy knows how the process works and it is not politicians who make the decisions in recommending drugs or the prices at which they are supported by the State. We have had an assessment process that has been ongoing for some time and there have been consultations with the drugs company, as the rules of the assessment process determine. I had an expectation that a decision would be made this week, as did others, and my understanding is it may now take longer. I have spoken repeatedly about this to the Minister for Health, Deputy Harris, after questions have been asked here and after speaking to one of the families concerned. He is also frustrated and wants to bring a positive clarity to families.

As the Deputy knows, there is an obligation on the HSE to ensure expenditure of this scale is approved on the back of strong evidence of clinical and cost-effectiveness. I accept that we have created timelines time and again whereby families have built an expectation around a decision and that decision has not been finalised. I assure the Deputy that the concerns and frustrations of the families are fully understood by the Government and the Department of Health. We certainly want to try to finalise decisions and get a positive outcome for the families concerned. However, we cannot change a position because of the frustration around a process, and we cannot move from a HSE structure making appropriate decisions on availability of drugs such as Spinraza and their cost to essentially having politicians making those decisions in a political and potentially inappropriate way.

The process is broken if we and Estonia are the only countries in Europe that have not approved use of this drug. The Minister, Deputy Harris, bypassed this process with his approval of the pembrolizumab drug. The process is broken when nobody is answerable to families or public representatives - those of us with a mandate - on the reason for delays. Delays matter and when somebody has this condition, every hour and every day without access to this drug matters; it is an hour and a day in pain. However, nobody seems to have to answer for this.

When I spoke to some of the families this morning, they anticipated virtually every word of the Tánaiste's response. He spoke about cost-effectiveness but they are looking at what is happening with the national children's hospital and overruns on the HSE's watch everywhere. They are looking at their children suffering because a faceless operation that answers to nobody is not taking responsibility for a decision. A precedent was created with the pembrolizumab drug and it is time for politicians to take charge.

As the Deputy knows, so far this year the HSE has approved the use of 23 new medicines and five new uses of existing medicines, representing an additional investment by the HSE over five years of approximately €175 million. It is not as if the HSE wants to deliberately prevent the use of these drugs. We are effectively in a negotiation between the HSE and the company involved to ensure we get a fair price so we can provide these drugs to families who have, understandably, grown incredibly impatient and frustrated because they cannot access them. I appreciate that there is frustration and I have answered questions about Spinraza for many months now. Many colleagues from the Opposition and Government benches are also concerned because they know these families. The process needs to come to a conclusion but we must be careful not to set a precedent that switches the decision-making process based on-----

The precedent is set.

-----critical assessment and make it a political decision when it should be a medical one.

The Tánaiste's time is up. I call Deputy Pearse Doherty.