I am also here to speak about Friedreich's ataxia. On Monday evening, I met Aoife Quinn from County Galway, who was diagnosed with Friedreich’s ataxia in 2021. She outlined to me her long pathway to getting a diagnosis for this rare disease and how the disease impacted on her life. She told me of her experience dealing with symptoms like loss of balance and speech difficulties and of how her symptoms had deteriorated over time. Every day brings her a loss. It is a relentless and progressive disease. The reimbursement of Skyclarys would slow the progression of this disease and give her the chance to maintain her strength and independence for as long as possible. She is just one of approximately 200 people across the State who are living with Friedreich's ataxia. Access to this treatment would also help those who are newly diagnosed, who may be spared some of the suffering experienced by those before them. I am aware that the HSE is engaged in negotiations with the drugs manufacturer, but as of today the negotiations will have been going on for almost two years. Every single day that passes, Aoife's condition worsens, as it does for every person who is suffering from this disease. The clock is ticking for them and they cannot face more delays. This drug is an opportunity to slow the deterioration - in Aoife's case before she is wheelchair bound or suffers other issues. She does not have time to wait. We all understand that there must be a process where the HSE negotiates to get the best possible price for medicines but we need to see real urgency here because every day that passes matters. Aoife has also expressed her frustration that she is not kept updated on the negotiations and that there is not regular contact with her on that. Will the Minister of State look at that? The bottom line is that these people do not have the luxury of time. Every day that passes without the medication is a day where symptoms deteriorate. They do not have time to be left waiting in the dark, wondering whether a medicine that could improve their lives will be reimbursed. Will the Minister of State provide clarity today or give a commitment that this will be resolved soon?

Sentiment score: 0.02

I appreciate the update from the Minister of State. I cannot emphasise enough the impact the ongoing delays are having on those impacted by the disease. I also call on the drug company to engage in good faith in the negotiations with the HSE. The priority of all parties involved should be delivering this vital medication to the people who need it. Aoife and all of those who suffer from Friedreich’s ataxia want an opportunity to have as good a quality of life as possible. This medication is critical for them. As we speak, people like Aoife are losing their mobility, their ability to live independently and so on. The onus is on the Minister and the Department to ensure that people who suffer from rare diseases are given access to vital medication. The frustration is that we are one of the wealthiest countries in the world and this drug is available in many other European countries. The Minister of State mentioned that the commercial proposal is still outstanding. It has been two years since this process commenced. If she were to put herself in the shoes of somebody like Aoife, she would see how there would be enormous frustration at the delays that are happening here. I urge her to do absolutely everything she can to get this resolved as soon as possible. Every single day matters.

Sentiment score: 0.21