I again wish to raise the matter of drugs that are used to treat rare diseases. There are two main issues here and the first is the lack of transparency within the current system.

There is no way of finding out what cost-benefit analysis model is used for these drugs and what negative or positive externalities are used to make an assessment on whether the drugs will be approved. This process must become more transparent. The protectionism in the system stopping this from coming to the fore must be tackled. The only person who can tackle it is the Minister. I know it is the HSE's statutory obligation but the Minister is allowing it to have that protectionism and lack of transparency. Where we have a lack of transparency we have a lack of trust. The Cathaoirleach knows the two main drugs I have been following for months are Translarna and Spinraza. Time is of the essence in these situations for children to have the optimum benefit from the drugs in the case of Duchenne muscular dystrophy. Translarna is effective only between certain ages. Children admitted to intensive care units in hospital do not have the time to wait for Spinraza. They do not have the time for the obscure processes to work their way through the system.

At European level, the Benelux countries have approved them but we need to see the benefit of being part of the EU and we need to know when this will become apparent to the people who are most impacted by the lack of transparency in decision-making. If a medicine is approved by the European Medicines Agency in terms of it being effective and safe surely we do not have to make the same judgment again. We need to stop reinventing the wheel in these situations. We also need to have greater clinician involvement. This country has some of the most fantastic clinicians and we need to take their advice and guidance on board with regard to the assessment of these drugs. We also need to have patient advocacy. It is hugely important in terms of patient input to the decision-making process that the patients are not chosen by the agency. They need to be from a range of backgrounds and put forward in ways other than being selected by the HSE. I would like a debate in the House on the issue.

I join with others in seeking a debate on sports capital funding. What was outlined in recent days in respect of Ministers lobbying heavily for private golf clubs is quite disturbing. That fund is deliberately to benefit children in disadvantaged areas, in particular to enable them to access sports facilities and compete on a level playing field. A debate is necessary and I call on the Leader to facilitate it with the Minister who has responsibility for sport. In this regard, I pay tribute to Martin O'Neill and Roy Keane who left their positions as manager and assistant manager of the Republic of Ireland soccer team by mutual consent this morning. Many of us have had a difficult time following the Irish team in the past year but we need to look back to the great wins over Germany and Austria to get us to the European Championships. The best half of football I have probably ever seen an Irish team play was during the match against Sweden in the European Championships. I also saw the team getting a one-nil win over a great Austrian side in Vienna. They lifted the expectations of the Irish soccer side for a number of years. Things have not been great in their most recent period. Whoever takes on the job, be it Stephen Kenny, Brian Kerr or whoever, it is important to give credit where it is due even though the past year or so has been difficult.

I also want to raise the issue of the Government's response to our Private Member's Bill that will be debated this evening. Our citizenship Bill would give effect to citizenship rights for children born in Ireland who have been resident here for three years. The Government has decided to oppose the Bill and I find this quite outrageous.

It is disgraceful.

Hear, hear.

The Minister for Health can go around his constituency of Wicklow to advocate for a child who may be deported and the Minister for Justice and Equality can go around his constituency of Laois to advocate for a child who may be deported but when it comes to an overall system to improve the situation for all children who may not be their constituents they are against it.

Hear, hear.

I find it absolutely unbelievable. I appreciate we will have plenty of time to flesh this out this evening but I find it very disturbing that it is fair enough to get stuck into a campaign as a constituency issue for a child who is clearly identified but when the Government has a chance to regularise the situation for children who do not need to be deported and who may be deported it turns its back on them in the most callous fashion. It backed the referendum in 2004, which was wrong. The Labour Party along with Sinn Féin, the Green Party and others campaigned against the referendum.

And me.

And Independent Members. Now the Government has an opportunity to put it right and it is turning its back on the children it pretends to support in individual cases in Wicklow and Laois.