I appreciate the opportunity to speak on this very important issue. I acknowledge all of the groups that have reached out to me and to my office. We all have a responsibility to do everything possible to ensure that all the people of Ireland can get the best treatments, medicines and supports available. I want to highlight specific conditions which have already been mentioned. Members of the Friedreich's ataxia group are still awaiting approval and access to a drug. There has been some movement on that, which I welcome. I welcome the opportunity to meet the group and the extraordinary individuals who are advocating, including Emily. The group travelled to Leinster House and successfully highlighted the unacceptable and prolonged wait they continue to endure. Emily put it very simply to me, namely that every delay has real consequences for her independence and function. That is why the opportunity to have this debate really matters. For these families, this is not simply an administrative process. Every week and month that passes can mean further deterioration in not only their physical health but also their mental health and quality of life. They want an opportunity to live independently as most young adults do. I welcome that the Minister and Taoiseach have engaged directly with the Italian manufacturer to encourage an application. I appreciate the response the Minister shared with my office on 27 May. I urge that every effort be made to progress this as quickly as possible because every time there is a delay in the treatment of a rare disease which is brought to the attention of the media or this House by successful campaigners, it shows that there is clearly a systematic error in how we deal with the new medicines and treatments that become available. I also want to highlight something multiple constituents have raised with me, namely Duchenne muscular dystrophy. I thank Stephanie for meeting me. It is a devastating and progressive condition but she was very strong and said she would be watching the debate. I want to welcome the positive recommendation from the HSE drug group. I thank it for the work that has been done on that. There is a lot more to be done and I will continue to engage with the Minister's office. I will always acknowledge when work has been done successfully. The former Minister for disabilities, Finian McGrath, got me into politics and worked tirelessly on the provision of a cystic fibrosis unit in Beaumont Hospital. I recently attended a meeting of Cystic Fibrosis Ireland and met service users and people currently attending treatment centres. A lot more can be done for those with cystic fibrosis. I welcome the 20-bed unit in Beaumont Hospital and the installation of other units. People with cystic fibrosis cannot be in close contact with others. There needs to be more public awareness of the difficulties facing those with cystic fibrosis and the other rare diseases mentioned by Members of the House today. I would encourage us to speak more about this issue. This is one of the first opportunities I have had since being elected to the House speak on this important issue. We, as legislators, have an obligation to make the lives of the people of Ireland better. I welcome the work the Minister of State has done with special education in my constituency. With regard to rare diseases, it needs more attention. When errors in the system pop up, they need to be dealt with as quickly as possible. We are not just dealing with a leak in a tap. Rare diseases affect people's lives and development. It is something that we need to fix.

Sentiment score: 0.30