This is the third week in which I have raised the issue of Spinraza with the Taoiseach. Two weeks ago, he said efficacy was an issue.

When I raised with the Taoiseach last week the fact that it was not and that it was an effective drug, he said he wanted to check it and would read the report. Has he read it and can he now confirm to the House that the drug is effective, that efficacy is not an issue and that it is solely down to cost? Families are waiting for a decision from the HSE. The Minister for Health has still not responded to them, despite me asking the Taoiseach on two previous occasions to direct him to do so. Will the Taoiseach now do so?

I wish to speak about the same matter. This day two weeks ago I raised the exact same issue with the Taoiseach. I hope he did not take it out of context, but I did say I hoped the Government was not hiding behind bureaucracy. The programme for Government commits to trying to get these drugs on a European-wide basis. On this side of the House we are finding it very difficult to understand how other European countries with which we are supposed to be working in an alliance have secured this drug for their citizens. There are 25 children in this country in need of it, two of them in my constituency, and the timing really matters. I hope there will be an effort to ensure a speedy response on the issue.

I thank the Deputies for again raising the issue. It is not a matter of giving a direction to the Minister. As a House, we decided in legislation that whether drugs were to be reimbursed should not be a political decision and it is not for good reason. Whether a new medicine is to be licensed for use is a decision either for the Health Products Regulatory Authority, HPRA, or the European Medicines Agency, while whether it is to be reimbursed is a decision to be made by the HSE national drugs committee based on best clinical advice. As I mentioned to Deputy Lisa Chambers on the previous occasion she raised the issue, it is not simply a matter of whether a medicine is effective but how effective it is

I know that it is not. The Taoiseach said he would check it.

I have read the report which indicates that the cost of the medicine outweighs the benefits by a ratio of 10:1 or even 20:1. When one measures the cost against efficacy, the ratio is 10:1 or 20:1, which, unfortunately, is not a very good figure. One would expect the cost-to-benefit ratio to be more like 1:1 but, unfortunately, it is 10:1 or 20:1. However, that does not mean that the medicine cannot be approved. It is always possible for the company to come back with new data and new information to demonstrate that the drug is more effective than the experts believe it is.

The HSE will not respond.

It is also possible for the company to come back with a revised price.