Martin Conway (Fine Gael)

I welcome the Minister to the House. I have taken great comfort in the plan which he has in place for dealing with this serious issue of rare diseases. Everyone who has been struck by a disease deserves equality. That is a simple premise, irrespective of whether a given disease is prevalent or unique. If we begin with this premise, it is then easy to decide on our policy.

It is a great shame that there was no plan in place to deal with this during the great days of the Celtic tiger. I am familiarising myself with the details because it is a new and technical area. However, it is an is important area and we all have a responsibility to brief ourselves on it. Within one month of taking office, the Minister put in place a competent and capable steering group made up of people from within the various areas of the HSE and HIQA who are aware of best practice in this area. The Minister has advised us that they are putting a plan in place. I look forward to the next step, that is, the publication of a plan. I have no problem with this group in consultation with the Minister spending the necessary time to ensure that the plan is proper and that it will be achieved. We are informed that during Ireland's Presidency of the European Union in 2013 we will be in a position to publish a plan. I trust we will see the implementation of the plan and that this will engage all the stakeholders and hold them to account with effective and proper deadlines. This will mean that if someone is diagnosed with a rare disease in the country, they will know exactly what they are entitled to, that is, what everyone else is entitled to anyway.

I am pleased the steering group is in place and I am confident we will have a plan. We have been given a timeline for the publication of the plan and I hope it will be implemented. Every plan is great and plans on paper are wonderful, but we must see the effects in practice and real benefits for those people, especially young people, who find themselves with a rare disease. Resources must be made available for the implementation of the plan. I sincerely hope there will be no budgetary constraints in this regard because we are coming from behind in this area.

I am heartened at the fact that a good deal is taking place internationally. A good deal appears to be under way in Europe in particular or, at least, this is what we have been told and I trust it is the case. I am pleased that the Minister has recognised the need to take full advantage of the various information technology options available to integrate databases and to use best practice in terms of information technology to ensure as far as possible that there is steady and ready access to as much information as possible and to as many diseases as possible. The Minister spoke about the integration of these systems. I imagine it is not rocket science but, unfortunately, these things tend to be complicated and difficult. Humans tend to make things difficult as well. I hope these elements of the plan will be carried out.

This is a small country of 4 million people and as a result we must examine international best practice and to take advantage of it. We must utilise and take advantage of whatever expertise is available abroad. I had not heard the term "orphan drugs" before but it is an interesting description. Many people take the view that the cost of drugs and medication for commonplace diseases in this country is far too high compared to our European counterparts. I imagine this problem is exacerbated when one is dealing with orphan drugs provided one can get them and they are available. I imagine it is a desperate thing to be unable to source these drugs not to mention the cost issues. This issues of availability and cost are critical and must be dealt with.

I sincerely hope this plan will be published along the timelines the Minister has outlined and that during the lifetime of the Government, which has been in office for one year, we will see the plan not only published, but implemented. That is the most important thing. The Minister has given a commitment which I believe to be genuine, as is that of the Minister of State. I have no doubt about his sincerity but I am keen to see the commitment delivered.