Simon Coveney (Cork South Central, Fine Gael) | Oireachtas source

I assure the Deputy that I, as a deputy head of Government and as a parent, try to act every day in terms of the responsibility I have. I do not think we should be trying to paint the HSE as some kind of cold body that does not want to grant reimbursement for Spinraza. It does want to grant it. The HSE rare diseases technology review committee recommended that it should be approved. As it moves through the process cost must be part of the discussion and because the HSE does not believe the company involved is offering value for money there is a stalling in the process. This is why the HSE has written to Biogen to this effect. I certainly hope that what was suggested earlier by Deputy Calleary, that the cost proposal has changed, can be a factor in the response the company makes to the HSE's letter.

Make no mistake, the Government wants this issue to be resolved. We want our children and the families who love them to get the support of the State in respect of rare diseases and the drugs that are very expensive but that are absolutely justifiable in those cases. We also have to ensure the State gets value for money because if it does not, we will spend money that could otherwise fund other really valuable drugs that are also needed and other families and victims will not get the support they need. In the context of the dealings the State has with the pharmaceutical sector and drugs companies, we have to ensure that there is a fair pricing model and that we have a process that does not allow children and their trauma and stories to be used as a way of trying to get prices agreed.

I will speak to the Minister for Health and the Taoiseach on this directly but it is important that politicians are not the ones who make decisions on what is or is not value for money in terms of healthcare and that we have a system we can rely on to do this. Again, I encourage the company and the HSE to try to resolve the issue because I know how many people in the House understandably continue to take a very personal interest in it.

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