We use Google Analytics to see which pages are read and how the site is used, so we know what to improve. This only runs if you accept. See our privacy notice for details.

Seanad
‹ An tOrd Gnó - Order of Business

Skyclarys reimbursement for Friedreich's ataxia

Summary

Senator Noonan called for reconsideration of the decision not to recommend Skyclarys for reimbursement, citing Emily Felix and others with Friedreich's ataxia.

I wish to raise a number of issues, the first being that of 28-year-old Kilkenny native Emily Felix, who was diagnosed with Friedreich's ataxia at the age of 12. The National Centre for Pharmacoeconomics has determined that Skyclarys, a drug which could be life-changing for her and the other 200 sufferers of this disease, not be recommended for consideration for reimbursement by the HSE. Again, I ask for reconsideration on that and I call on the Minister to make a statement on it because of the extremely debilitating nature of the condition that Emily and the other 200 sufferers in Ireland have.

I think we have heard some rock and roll reference here and I will mention "Montage of Heck", a documentary and compilation album of Nirvana's. We have a bit of a montage of heck in terms of Government policy. The rural housing policy was launched last week. We have had the closure of the public consultation on the nature restoration plan. Lo and behold, the long-awaited phase 2 of the land-use review was published two days after both of those policies. This document has huge implications for land use in Ireland. It was launched very quietly and published on the Department's website.

There is no time now because it is at the end of the Dáil and Seanad term. I call on the Minister for agriculture, the Minister for Housing, Local Government and Heritage, and the Minister for the environment or whoever is responsible for this document to be present with us here for a debate on this document in the autumn schedule. It is critical because we are launching policy documents left, right and centre all of which are contingent on this. They have been sitting on the Minister's desk for well over a year and now with two weeks to go before the end of the Dáil and Seanad schedule, this document has been launched.

Uisce Éireann has been mentioned. Yesterday, An Coimisiún Pleanála put back by one year to 2 July 2027 a determination on the Shannon pipeline project. Dublin's water is on a knife edge, particularly at this time of year. A potentially hugely wasteful project that will put the children's hospital in the shade in terms of its cost will now overrun further because of the delays in deliberation. The head of the infrastructure task force has blamed the Green Party for the slow pace of infrastructure delivery and yet Jack Chambers is holding back on giving An Coimisiún Pleanála the resources it needs to make decisions in a timely manner. I again call for a discussion on that. This specific project is in the planning process, which is fair enough. Separately, the Minister needs to come in here and talk about the real holdups and the real reasons behind infrastructure delays, owing to An Coimisiún Pleanála, the National Parks and Wildlife Service and other resources required to get the State to build the infrastructure needed.

Comment on this