Rare diseases and orphan drugs
Deputy O'Sullivan raised the need for a successor to the national rare disease plan and publication of the Mazars report on health technology assessment. The Tánaiste said Ireland needed to improve medicine licensing and reimbursement because patients were falling behind peer countries.
I am glad the Tánaiste is present. Given that he is a former Minister for Health, he may be able to provide some insight on the ongoing difficulties about rare diseases and orphan drugs, and, in particular, the commitment in the programme for Government for a successor to the national rare disease plan.
In addition, I am also interested in the publication - this has not yet happened - of the Mazars report, which will hopefully give us some insight into the health technology assessment process and how we are lacking on that side. That report was put together in late 2019 or early 2020 and is sitting somewhere on a desk gathering dust. I raise this matter in the context of the drug Luxturna, which could possibly benefit four people in the country, three of whom are children who will inevitably end up blind unless they receive doses of that necessary drug. Can the Tánaiste provide any insight regarding the publication of the rare disease plan and comment on the availability of Luxturna?
Comment on this
I thank the Deputy for his question. It is important that we should improve our performance when it comes to licensing and reimbursing new medicines. We have fallen behind many of peer countries in that regard. It is not right or fair that patients in Ireland cannot get a medicine that they would be able to get via the NHS in Britain or in similar health services elsewhere. We need to up our game in that regard. Many of these medicines were invented and are being produced in Ireland. It is, therefore, a bit strange for us to encourage pharmaceutical companies to invest here and for us then not to purchase their products. It is something the Government is working on. We are providing additional funds this year for new medicines. Some 20 to 30 new medicines have been approved this year so far, which is what one would usually see in a full year. The situation is improving.
I do not have an update on the particular medicine the Deputy mentioned. I will ask the Minister for Health to provide an update on that and also on the publication of the two reports.