I wish to raise access to the drug Spinraza for 25 young people in Ireland. A number of Deputies have raised this issue in the last nine months. I understand the HSE leadership met on Thursday to give a final decision for the families. I was speaking to Lisa McHugh Farley in Clondalkin and her son Glen is eagerly awaiting access to this drug. The 25 families want to know what the decision is very quickly because this has been a prolonged process.

I call Deputy Ó Caoláin on the same matter.

I note that neither the Minister nor the Minister of State who often outlines the position on nusinersen, or Spinraza, is here. I ask that the Taoiseach update the House today, given - and, I hope, accepting - that families are going through a very prolonged torment regarding this matter. I ask that he do so not only for the 25 children, but also for the 50 adult survivors across the State, who should have the opportunity to explore the application and relevance of this drug to their condition, namely, spinal muscular atrophy. Not all of them will benefit but a great number likely will, and they are entitled to that chance. I appeal to the Taoiseach to let us know what was the HSE leadership team's decision last Thursday and what will happen next.

I call Deputy Aylward on the same matter.

Like my colleagues, I will not dwell on the matter but note I have raised it consistently. My colleague here in Fianna Fáil and I raised it last week. Expectations have risen because we were told here last week that Thursday was decision day for the HSE. I have had numerous parents ringing me at the weekend and this week asking what the decision was. Could the Taoiseach let us know what it was so we can offer some relief to these parents and the children who depend on this drug?

As Deputies will know, this is not a political decision; it is made in line with a statutory process under the Health (Pricing and Supply of Medical Goods) Act 2013. I understand that the committee met to consider a number of new medicines, including Kuvan, Spinraza and Translarna. The committee must consider the evidence as to whether a drug is effective; if so, how effective; and whether the price charged by the company is fair and in line with charges in other countries. Under the statutory process, the HSE must issue a letter to the company this week formally notifying it of the HSE's proposal. After this, the company has another 28 days to respond and, as is the case with all medicines, has the opportunity to submit revised data on either efficacy or cost.