I am pleased to have the opportunity to raise this important issue. My colleague Deputy Doherty has outlined how it is affecting two families in Donegal. The European Medicines Agency has approved this drug for DMD last year. Now, together with, I am sure, all colleagues in the House, I am anxious that the Department would exert pressure on the HSE to make this drug available to these children. An example of the success of this drug is that Nathan O'Sullivan, who Deputy Doherty mentioned, has been on this drug for a number of years. His mother took him to the UK. He took part in the trial relating to the drug. The trial was extremely successful, and his life has been prolonged. He leads a full life. He works with the local GAA club as a statistician and has his own car. We would like to think that his brother Diarmuid and the Langan family would have the opportunity of obtaining this drug as well. We know the cost of it can seem rather high but we cannot put a cost on the life of a child. They are suffering and the families are suffering. The mental torture for families with this condition is 24 hours a day, seven days a week, 365 days a year as they care for their children. There are about 100 or so in the country. It is incumbent on the Minister, the HSE and the Department to ensure that this drug is made available as soon as possible. There is a question of being ambulatory. They have to be able to move when they start the drug so the clock is ticking. It is vitally important that a positive decision is taken as soon as possible and that the drugs are made available. I would also say to the drug company involved, which is making exorbitant profits, that it should reduce the prices and work with the Department and the HSE to make the drug available sooner rather than later.

Sentiment score: 0.18

What is difficult to understand is that givinostat is available in most EU countries. Whatever is going to be decided now must be fast-tracked. The Minister of State referred to the receipt of a commercial offer on Friday, 8 May. In the next few weeks, a decision must be taken. The ironic thing about this is that Aaron's family lives in Laghy, close to the Border and the O'Sullivan family lives in Ballybofey, close to the Border. The children on the other side of the Border, in Fermanagh, Tyrone or wherever are availing of this. It is vital that there is no discrimination as far as these children are concerned. We are pleading with the Minister of State and with the Minister, who is pragmatic - we have had dealings with her about issues in Donegal. I hope a decision can be taken soon. The question of finance should not be an issue. I am calling on all concerned, including the drug company, the HSE and the Department, to ensure these children can avail of this treatment as soon as possible.

Sentiment score: 0.03

Sorry Chair, time is ticking. It is an important issue.

Sentiment score: 0.06