Every April, we in Duleek are blessed with a sea of purple. It is because, ten years ago next year, a family in Duleek lost their daughter through cystic fibrosis. Ann and Kevin Noone lost their daughter Kelley. We come together every year for a run in Duleek in memory of Kelley and her cousin Cathy, who also lost her life to cystic fibrosis. Both of them were teenagers. This week, I have been contacted by four parents who told me that a new and potentially life-saving medicine for cystic fibrosis has been approved by the European Medicines Agency for use by parents of children between six and 11 years of age. The treatment, Kaftrio, is an oral medicine designed to increase the quality and function of cystic fibrosis proteins at a cellular level, offering physicians a new treatment option for these young patients to help combat their condition as early as possible. There have already been remarkable results for patients who have opted for this new therapy. The manufacturing pharmaceutical company, Vertex Pharmaceuticals, has come to an agreement in respect of the supply of Kaftrio to Ireland for use by Irish children with cystic fibrosis, many of whom will be starting their course of treatment this summer. However, some parents recently learned that their children have been excluded from access to this medicine. Approximately 35 children with cystic fibrosis have been deemed ineligible. Two of them live in my area. Parents of the children have reached out to Vertex to avail of Kaftrio directly but, as it is outside the HSE scheme, such a supply would come at a steep premium. I understand that Cystic Fibrosis Ireland has reached out to both Vertex and the HSE on the issue as a matter of urgency, but if we were to write to the Department of Health and the Minister, Deputy Stephen Donnelly, on the matter, we might be able to help these 35 children. I would like the Leader to write to the Minister on this issue because he probably would not listen to me. I will send this on to him but her word would probably be a lot stronger than mine. This would be a huge benefit to these parents and children. Children with cystic fibrosis, particularly young girls, are dying younger. If we can save lives - this drug can do that - we should urge the Minister to allow those children to get this drug.

I support the comments of Senator Buttimer. Drastic action is needed. I have been appointed by the Government as Chairman of the Oireachtas Joint Committee on Autism. We will start our public meetings next week. We will meet with the National Council for Special Education, AsIAm and the Ministers of State, Deputies Madigan and Rabbitte, before the summer recess and we will bring recommendations for policy changes to the Government at the end of March next year. I fully support the comments of my colleague Senator Buttimer. To give an example in my local area, until recently we only had the equivalent of half a speech therapist covering the entire county. I heard in the past 24 hours that the two occupational therapists there have now moved outside the area. We have more than 240 kids waiting for assessments of need and more than 700 children waiting on services. Things are at a drastic point within disability services.

I call on the Minister for Education, Deputy Foley, to come to the House to discuss the allocation of home-school liaison officers. In my home county, for example, there are six home-school liaison officers covering a large number of existing schools that are covered under DEIS, mainly in the town areas. One of the schools has 534 pupils and one such position. More than 60% of the population of the school is non-Irish, with 30 different nationalities. Among all the schools in the county that are covered under DEIS, there is an absenteeism rate of between 18% and 20%. The whole system in the county is at breaking point. Several schools have been added in under the most recent allocation but the schools that were there previously are at breaking point. Ballymahon Vocational School, which has 407 pupils, shares a home-school liaison officer with Roscommon Community College, which is located in another county. The Minister needs to come to the House on this issue. If we do not get the necessary intervention in education and get kids to school, we will pay in the long run. I ask that the Minister be requested to come to the House to discuss this matter which is affecting schools across the country. There is a particular issue in my county because there is a high percentage of non-Irish people living there, particularly in the county town, and that is leading to a very high absenteeism rate. There are not enough home-school liaison officers to keep on top of it.