Anne Rabbitte

I'm not hearing.

Look, we are hearing that Gifenostat is on the list.

Senator Theresa Costell has got confirmation that that is there.

So the fact that we have one drug there, perhaps their information, and I'm led to believe their information was in a number of weeks before that.

But at the same time, it would be very important for the families to have timelines.

Families want timelines online.

100 days more waiting is a concern for these families.

You've heard Emily speak there.

You've heard Craig speak.

And I've heard Aoife Quinn, I've had Helen speak.

That in actual fact is the deterioration.

They want timelines.

They want to know what they're working to.

Clarity, transparency is what we're looking for in this, Clare.

Look, it is moving the fact that further information, this is all positive that we've looked for further information, but is it moving at the pace that it should remove at?

Absolutely not, Clare.

The system that is in operation at the moment is a bureaucratic system, but it's not only that.

It's out of kilt with where modern technology and innovation and science with drug manufacturing is at.

And we are producing orphan drugs that can remedy, that can absolutely slow down the progress of what the young people that have Friedrich Ataxia have.

If they get access, we know that it has a 55% improvement.