Diarmuid Wilson (Fianna Fail) | Oireachtas source

I welcome the Minister of State, Deputy Catherine Byrne, and thank her for attending this debate on the issue of the drug Translarna, the medication for Duchenne muscular dystrophy, a degenerative condition which affects five young boys in this country. While this issue has been raised and discussed numerous times in the Lower House and this House, including last Tuesday by Senator Rose Conway-Walsh and also by Deputy James Browne, who held a briefing in the AV room, the lack of action is very disappointing.

The disease's progressive nature requires urgent action and the HSE's refusal to fund the drug has only exacerbated the situation. The manufacturer of Translarna, PTC Therapeutics, will soon make a new application to the National Centre for Pharmacoeconomics. I implore the Minister to treat this application with priority, given the time-critical nature of the condition of these boys. This drug would improve both the quality of day to day life of the boys and their life expectancy and productivity. Having spoken to some of the families on Tuesday of this week, their determination to fight for a better life for their sons shone through in a profound way. Facing up to the injustice not only of their children's condition, but also to the denial of this treatment, requires serious strength. I can tell the Minister of State that while they may be small in number, they have the strength to fight and they will do so, with our assistance on this side of the House.

I remind the Minister of State that the responsibility for these boys' lives lies with the Government. It is not just her job or the job of the Minister, Deputy Simon Harris, but their duty to provide them with the best possible care, given their incredibly tough situation. Will the Minister ensure the boys and their families are not left waiting another two years for a definitive decision? On 19 June, the Minister, Deputy Harris, said there would be no delay in the processing of this application. I sincerely hope he ensures this is the case. These boys and their families do not have two years. Translarna is available in 22 European countries to 400 children just like these boys. I hope the Minister of State is willing to do what she can to ensure they are afforded the same chance of life as their peers in the UK and on the Continent.