"We are not going to regain any of the abilities we've lost, but Skyclarys will give us time. Time when you're dealing with our progressive relentless disease is everything. We all deserve time with our loved ones." Those are the words of Emily Felix, a 28-year-old trainee solicitor from Kilkenny who is living with Friedreich's ataxia. It is a rare, progressive and life-limiting neurological condition. It gradually takes away mobility, speech and independence. Emily was diagnosed at 12. Since then, she has completed her degree, pursued postgraduate study and begun training as a solicitor. She is doing everything she can to protect her health and her future, but the disease continues to progress. Yesterday, as the Taoiseach knows, the HSE drugs group met to consider reimbursement of Skyclarys, the first approved treatment that can slow the progression of Friedreich's ataxia. Patients hoped for a positive decision. This process has been ongoing for years. Instead, the drug was referred to a rare disease technical review group for further consideration. This group is not a standing body and must now be convened. This could mean further delays and potentially months before a final decision is made. For patients, that delay is unbearable. It can mean losing the ability to walk, to speak clearly, to swallow safely or to live independently. Skyclarys is not a cure but it offers something precious: more time with mobility, working, communicating and living independently. Dr. Richard Walsh, consultant neurologist and co-director of the National Ataxia Clinic, has described this drug as a ground-breaking development. He has said that he would prescribe it if it were available in Ireland and that it may reduce the rate of disease progression. Skyclarys has been approved across the European Union since February 2024. It is already publicly funded or accessible in several European countries. Irish patients are watching people with the same condition receive treatment elsewhere while they continue to deteriorate without it. That is cruel. Yesterday, those living with Friedreich's ataxia gathered at Leinster House waiting for good news. Their hopes were high, but advocates and campaigners were left waiting with no communication. They were left desperately making phone calls, checking for updates, asking journalists and asking politicians if they had heard anything. They were treated appallingly. Then, when the news did eventually filter though, they were left devastated. Craig Coady from Cork, who has already lost his 13-year-old son, Rory, to Friedreich's ataxia, now watches as his older son, Paudie, deteriorates from the same condition. He took to social media to express his anger. He said: This is the worst news for my son. The government is kicking the can down the road. We don't have that time because Paudie is getting worse every day. I am so upset and disgusted. Medicines must be properly assessed, and I get that, but the patient cannot be lost in the process, and that is what happens. In fact, in the programme for Government the Government committed to reviewing that process because it was accepted it does not always work. The technical review group obviously now needs to be convened and needs to meet urgently. Emily cannot afford more delays. She is a young woman with a career, ambitions, a family and a future she is fighting to protect. The same is true of every single person living with Friedreich's ataxia in this State. They cannot be left waiting any longer and they deserve better. Does the Taoiseach accept that those living with Friedreich's ataxia were treated appallingly yesterday, that they deserved to be treated with respect and should have been properly communicated with? Does he recognise that this is a matter of urgency for them and that they cannot continue to wait while time is running out?

Sentiment score: 0.03

I met many of those patients and people with the illness yesterday. Many of them were here in Leinster House. They told me, as they have in the past, they cannot walk and they cannot swallow and, as the Taoiseach acknowledged, it is also very difficult for their families who have to watch as their condition worsens and the disease progresses. This drug was approved by the European Union in 2024, over two years ago. It is publicly available in many European countries and yet again Ireland lags behind and we are not providing this drug. I see it simply. This is about empowering the clinicians. At the moment clinicians treating those patients do not have the option of prescribing that drug. We should enable them to have that option because this is an issue for clinicians and patients to work out the best treatment for those patients. That is an option available in Italy, Germany and other countries. It is not available in Ireland. When is that group going to be convened because those people who were here yesterday were really upset? There was no communication. They were making phone calls, and they fear more months of delay before a decision is made.

Sentiment score: -0.13