Rose Conway Walsh (Sinn Fein) | Oireachtas source

On behalf of the Sinn Féin team in the Seanad, I wish to express our sincere sympathies to the families of those who were killed and injured in the Las Vegas atrocity. Our thoughts and prayers are with them at this painful time, as indeed they are with those who lost their lives in the incident in Marseilles at the weekend.

I wish to move the National Asset Management Agency (Amendment) Bill 2017.This Bill will amend the NAMA and National Treasury Management Agency Acts to empower NAMA and the Ireland Strategic Investment Fund, ISIF, to contribute to the stability of the housing system through the provision of social and affordable housing.

My central business today, though, is the refusal of the Government to approve Translarna for the treatment of five young children with Duchenne muscular dystrophy. Just two young boys are currently of the age to receive the treatment as we speak. I welcome the families to the Visitors' Gallery. They are present to attend the briefing at 4 p.m. in the AV room. As legislators of all political persuasions, we have a responsibility to join their fight for access to treatment that, as it has done in the North and elsewhere, significantly delays the loss of ability to walk and associated medical difficulties for these children. Today's briefing will provide these families with the opportunity to share with us the story of their campaign to secure access to the drug Translarna, which has a proven life-changing impact on sufferers of muscular dystrophy. Translarna is available in the North and my colleague, Ms Michelle O'Neill, approved it during her time as Minister of Health. Along with our party president, Deputy Adams, she met the parents of muscular dystrophy sufferer Lewis Walsh Harte - they are present today - to hear their account of how crucial a factor time is in obtaining access to this drug.

Translarna is available in 22 other EU countries as well as the North. This leaves parents facing an unjust decision, namely, must they move to another jurisdiction to obtain this drug? It is imperative that, in cases such as these, we have an all-island approach to accessing life-changing and life-saving medicines. It is illogical and unfair to have different levels of access for sufferers in different parts of the island.

The families have been told that there is no money, and the data are insufficient, to fund Translarna. How can we possibly explain to these young children that the reason they are not walking like their peers in 22 other countries, the North and their very own country is that the data are not sufficient? How can we possibly tell these five children that we cannot afford to provide this vital medicine when we see millions of euro wasted on renting empty office spaces for Departments? These children cannot wait for lengthy legal processes that are likely to cost much more than the treatment would cost in the first place. I urge the Government to right this wrong, make the right decision and approve Translarna without further delay. I call on the Minister for Health to attend the House to discuss the matter and make Translarna available sooner rather than later.