Sir, – On Wednesday, the HSE Drugs Group deferred a decision on the life-changing Skyclarys drug, which is used to treat Friedreich’s ataxia. The decision was taken to defer so that further research can be conducted. How devastating. Skyclarys was approved by the US Food and Drug Administration in February 2023. The European Medicines Agency granted approval in February 2024. Italy approved reimbursement through its national health service in December 2025. Germany, France, Spain, Portugal, Greece and the Czech Republic all provide access. So, Skyclarys is clearly available and it makes a real difference to people with Friedreich’s ataxia in countries where it has been approved. It is life-extending and enriching, slowing the rate at which the disease progresses. This means people with Friedreich’s ataxia are living longer with greater independence. It is depressing that approval of this drug is still being discussed and reviewed in Ireland.This in not just about Skyclarys or people with Friedreich’s ataxia. In Ireland, it takes approximately 1,024 to 1,370 days (roughly 3 to 3½ years) on average for orphan drugs (drugs for rare diseases) to become available to patients after receiving European marketing authorisation. By contrast, the EU average wait time is 614 to 625 days. In one of the wealthiest countries in the EU, how can that be justified? What does it tell us about our priorities and values as a society. What does it say about our Government? Even from an economic standpoint, surely it makes more sense to avail of drugs that are proven to extend people’s independence and quality of life. The alternative is allowing the disease to progress, causing the person to require additional support and care earlier. As a society, represented by our Government, it is incumbent that we wrap our arms around those most vulnerable in our society. Equally, those most vulnerable should feel that we, as a society, have their back. In reality, it is clear that the most vulnerable people are made to feel like a burden. They have to fight tooth and nail for the vital support they need and are often forced to go public before being listened to.Even after revealing to the world their personal and deeply emotional experiences, they are still told to wait. That it is not cost-effective. How can it be accepted? – Yours, etc,ANTHONY HANNON,Millbrook Lawns,Tallaght, Co Dublin.