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Dáil
‹ An tOrd Gnó - Order of Business

Duchenne muscular dystrophy medicines

Summary

Deputy Ward highlighted unequal access to medicines for children with Duchenne muscular dystrophy, citing two boys in Donegal. The Taoiseach said drugs were being progressed through the HSE process, including givinostat and Skyclarys.

Verona Murphy An Ceann Comhairle Independent

The time is up. I call Deputy Charles Ward.

Comment on this

I have raised this multiple times over the past few months. I welcome that the Minister of Health has signed off on the end-to-end review for funding of new drugs in Ireland but we have said on many occasions that for children suffering from Duchenne muscular dystrophy, DMD, time is muscle and children with DMD face a blatant inequality under the current system.

I am sure the Taoiseach will be aware of two boys in Donegal. Diarmuid O’Sullivan has DMD, as does has his brother. His brother is on a trial and has access to the medicine, but Diarmuid does not. Aaron Langan lives in Laghey, ten minutes from Belleek, County Fermanagh, where the drug is readily available. Can the Taoiseach give us a timeline on the review of Ireland's approval system for drugs such as givinostat? The families cannot wait. We need to make sure we get on this now.

Comment on this

There are three points. First, we are acutely aware of the pressures and anxieties in families in relation to a number of drugs pertaining to rare diseases. There was good news last week in terms of the HSE drug group approving givinostat and sending it forward to the senior leadership group, which will now consider it. Hopefully we can get this progressed as quickly as possible. There are other drugs. Skyclarys is on the agenda, among others. In fact, we are increasing the number of approvals on a year-by-year basis. The recent pharmaceutical agreement arrived at with the Irish Pharmaceutical Healthcare Association, IPHA, and the Government provides for better timelines in terms of getting drugs approved.

The Minister has also signed off on a review, which, I think, is very important, but only made that decision following work up from her Department officials who have given considerable thought to this because what we will see now and into the future is a greater volume of what used be called orphan drugs for rare diseases. Where companies in the past never invested, now they are. That is going to come at us fairly significantly.

Comment on this