I want to read an excerpt from an email I got today in relation to Skyclarys for people with Friedreich's ataxia:

At 19 years old, I should be excited about my future. I should be looking forward to building a career, travelling, making memories with friends and planning the life I want to live. Instead, I wake up every day wondering what ability I will lose next. My future is overshadowed by fear, knowing that my condition will continue to deteriorate while a treatment exists that could slow the decline.

The Friedreich's ataxia community in Ireland has been fighting for reimbursement of Skyclarys for a long time. We have shared our stories, met with politicians, engaged with decision makers and done everything asked of us.

The postponement of a decision this week while expert opinion was requested by the committee was incredibly disappointing. I do not know, after hundreds and hundreds of days of people waiting for a medication that they desperately need, how a committee that is paid to do a job still has not made a decision. If expert advice was needed before now, why was it not sought before now?

In a country where we are so educated and have so much money, and in the EU, where other countries are already reimbursing for this drug, why does it take so long, and why do we have such an inhumane system for the reimbursement of these drugs in this country? That is what it is when you stand face to face with people and families experiencing this. What is the Government going to do to speed up the process and help the people who need help the most?

I thank Deputy O'Meara very much for that contribution and also for reading out that correspondence from his constituent. There are two points to be made. First, there needs to be a broader review of how the drugs process works. I say that without any comment on the specific drug. My colleague the Minister for Health is fully committed to that and has work under way in that regard.

Second, on the specific drug, I actually think the actions being taken are being taken to ensure that the full opportunity is given to examine the effectiveness of the medicine by hearing directly from the clinicians in Ireland who treat the patients, and also hearing from the lived experience and the patient voice. I am pleased that they have put a timeline of four weeks, or a month, on that. I really hope that process can be used robustly and thoroughly to scrutinise the effectiveness of the drug.