Friedreich’s ataxia is a progressive and degenerative disease for which there is no cure. Until recently there was no effective treatment either but now there is. It is called Skyclarys and it is available elsewhere in Europe but not here in Ireland. People with Friedreich’s ataxia have been waiting since 1 August 2024, 677 days, for the HSE to make this drug available. Why is Skyclarys not on the agenda for the HSE drugs group meeting that will happen tomorrow? Further delay is intolerable and cruel because there is no pause in this disease.

Every day lost has consequences. Emily Felix told me that delay so far has cost her permanent damage - loss of swallow, loss of speech - and she is not prepared to suffer any more. I would like the Taoiseach to tell Emily Felix, Oisín Pollard, Jodie Donovan, Emily Kerrigan and Niamh Herbert, all in the Public Gallery, all waiting and waiting for this drug.

Thank you, Deputy. Your time is up.

I would like the Taoiseach to confirm for them that the HSE drugs group will deal with this matter-----

I call the Taoiseach to respond. Deputy McDonald, you know you are way over time.

-----and that these fine people will have access to the treatment they need.

Co-operate, please. I call the Taoiseach to respond.

I have discussed this with the Minister for Health. We want all those living with Friedreich's ataxia to have access to Skyclarys as fast as we possibly can. The company made its commercial proposal on 28 May-----

No, 21 May.

Please, Deputy.

On 28 May last-----

On 21 May.

Please, Deputy.

I have documentation.

I am interested in getting this drug over the line.

The Taoiseach cannot mislead the House.

I am not interesting in playing games with this. The Deputy asked me a question. I ask her at least to allow me to answer because there are lots of families and people very dependent-----

They are here-----

Deputy, please.

-----on our getting this over the line. I have discussed this. I had an official with me yesterday when I met one individual who is living with Friedreich's ataxia and with his parent. The commercial proposal came in on 28 May.

No.

The Deputy is referring to the original proposal in terms of 2024.

No.

There have been engagements between the HSE and the company, Biogen Idec. It will not be tomorrow-----

Why not?

-----but what we are endeavouring to do is to get this on-----

Thank you, Taoiseach. There may be further engagement on both sides.

I will just make the point because things have been said here and there are lots of families-----

But your time is up.

But they need to know the information.

This is Questions on Policy or Legislation, Taoiseach. Your time is up. The next speaker is-----

Basically, we want to get it as quickly as possible from the July meeting.

I call Deputy Gibney.

The Taoiseach needs to give them a date.

That is shocking.

Please, Deputy McDonald. I call Deputy Gibney.

They are in the Public Gallery.

I call Deputy Gibney. Would you please-----

Stop playing games.

I am not playing games.

Deputy Gibney is on her feet.

They want an answer.

The rules are the rules, Deputy. Please co-operate.

Shocking.

What is shocking about it is that they do not have access.

Deputy Gibney is on her feet.