Ceisteanna ó Cheannairí - Leaders' Questions Dail Éireann — 2026-07-16 ============================================================ Simon Harris (FG), Wicklow Gabhaim buíochas leis an Teachta McDonald. I thank her for the question. First, I join with her in welcoming Cara Darmody back to Dáil Éireann. It is good to see her again. While she continues her campaign in relation to improvements around assessments of need and disability services in general, it is also worth noting that she has already changed Ireland for the better with the creation of the fund that has made a real difference in terms of more children getting assessments. My colleague, the Minister of State, Deputy Higgins, who is here, along with the Minister, Deputy Foley, are committed to bringing forward legislation on the assessment of need process. We look forward to engaging with her on that soon. She is very welcome back. I look forward to seeing her soon. I thank Deputy McDonald for raising what is genuinely an important issue. I do take the point that when we talk about this in the abstract or from a process point of view in here, that for people watching this is their real lived experience. I know there are people across this House, including Deputy McDonald, who have engaged with patients and families on this drug. I fully understand that it is a worrying and anxious time for them. Today, my colleague, the Minister of State, Deputy Higgins, met with Muscular Dystrophy Ireland. As the Deputy can imagine, this was an issue it quite rightly highlighted as well. I think there might have been officials from the Department there as well. I accept that this is frustrating for people at home, but I still need to say it: there is an ongoing process under way. That is a process guided by science. It is a clinically led process. The HSE is currently assessing this medication. Deputy McDonald is right: there was consideration by the HSE's drugs group on 14 July and it made the decision to seek additional advice from the rare diseases technology review committee. Where I somewhat disagree with her emphasis is that I do not see that as passing a file from one committee to the other; I actually see it as an opportunity to bring together the experts. The purpose of this is to bring in national clinical experts in this condition, crucially with patient representatives, so as to have their voices as well, ensuring that their lived experience plus specialist expertise informs the assessment. There is a deadline given to this work of four weeks as well. Referral to a rare disease committee is intended to ensure that every possible opportunity is given to a medicine to demonstrate its effectiveness for patients. I take the Deputy's point in relation to 2024. I would just make the point - this does not matter a huge amount to patients, but it is the truth - that the commercial proposal was actually received from the company in Ireland on 27 May 2026, so it is not a question of the Government or indeed our representatives through the HSE or clinicians have been in any way dilly-dallying on this. The application actually came in----- --- Source: Houses of the Oireachtas. Licensed under CC BY 4.0 (https://creativecommons.org/licenses/by/4.0/). The Official Report is revised after first publication; the fetch timestamp below identifies the version quoted. Record URI: https://data.oireachtas.ie/akn/ie/debateRecord/dail/2026-07-16/debate/main Retrieved: 2026-08-27T06:52:17+00:00 Sitting date: 2026-07-16