Sam Bailey is an eight year old boy who lives in Rathcoole. This week Sam is in hospital in Crumlin. Glen Farrelly is 16 years of age. He lives in Clondalkin. Sam and Glen and 20 other children suffer with spinal muscular atrophy, which is a degenerative condition. Their parents are without hope at the moment. They are looking at their children with a condition that, week on week, month on month, is getting worse. For anybody in this House who has ever had a child in a serious condition, they will know that the feeling of hopelessness and helplessness is undescribable.

I raise this issue here today because those parents cannot do it themselves. I have raised it before, as have other Deputies, and I have heard the official response. I reiterate the point. The programme for Government in regard to new drugs, in particular, Spinraza, which is the hope for these children, commits to engaging with European countries to make these types of drugs available. The problem is we have evaluated it here and the evaluation system has not made it available-----

Thank you, Deputy.

I will finish on this because it is an important point. The evaluation process has not made it available here in Ireland, yet it is available in many European countries such as France, Germany, Belgium and the Netherlands. My question is this. There is a small group of people who need this and need it urgently. Their condition is deteriorating. Will the Minister for Health look at a new access programme or have a review of the evaluation process? These children need a response soon.

I thank the Deputy. This question has been raised by Deputies from all sides of the House numerous times recently. I know the cohort of people is very small. It is very frustrating because we would all like to see the process concluded as speedily as possible. However, as the Deputy will be aware, this process is governed by legislation, the Health (Pricing and Supply of Medical Goods) Act 2013, which was decided by this House. It is not a political decision to decide what drugs are prescribed, although I am not suggesting the Deputy is unaware of that. It is a very prescribed process under the HSE and the drugs procurement agency, which both have a role to play. As I understand it, we expect the senior team in the HSE to make a decision. As the Deputy knows, it was not approved at the initial attempt.

It is a difficult balance to get right when dealing with multibillion euro drug companies which are coming to the Government and effectively charging what they want. We cannot say "Yes" because if we can get a better price for this drug, and if it is approved, then we can see so many more people treated. As with any other drug, there are cost efficiencies and clinical evidence to be considered. The process is at an acute stage. We, as public representatives, can continue to make the case to have it done but we also have to allow the independence of that process, as set out in the legislation of the House.