Simon Harris (Wicklow, Fine Gael) | Oireachtas source

I always show people respect but the Deputies also need to be very truthful about where this power lies, based on the laws passed by this House. The Health (Pricing and Supply of Medical Goods) Act 2013 very clearly means that the HSE is the decision-making body on this. I know that this is a very important and sensitive matter. It is very important for the families and I absolutely understand why they would be rightly worried, upset and concerned. On 7 November last, the HSE made a decision not to add Vimizim to its reimbursement list. In doing so, the HSE has made it very clear to the company that the company can come back to the table and produce new evidence and negotiate. During my time as the Minister for Health, we have seen people come to the table to negotiate, even in extraordinarily difficult circumstances relating to trying to access new drugs, and we can often find a way forward. I urge colleagues to not just call on the Government to act, but to also call on the drug company to sit down with the HSE and negotiate a way forward.

I understand that a small number of children are on an access scheme for this drug. It is extraordinarily important that the drug company acts in an ethical manner. The Declaration of Helsinki is very clear that access schemes and reimbursement should not be linked. There is absolutely no way this House should stand over the removal of children from an access scheme for that drug. I would be delighted to have a word with the families today, and to keep in touch with Deputies on this. I believe, however, that people need to get back to the negotiating table.

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