The Claire Byrne Show
The pressure is on for life-changing medicine for Friedrich’s Ataxia to be available.
08 Jun 2026
Transcript generated automatically by AI and may contain errors.
Chapter 1: What is the life-changing medicine for Friedrich's Ataxia that Craig Coady is advocating for?
The Clare Byrne Show on Newstalk with Aviva Insurance.
Now, people who are regular listeners to the show, indeed, if you follow us on our social media channels as well, will remember Craig Cody from last week. And Craig is meeting the Taoiseach Micheál Martin today. He's continuing to plead for this life-changing medication for Friedrich's ataxia disease.
Friedrich's ataxia has already taken the life of one of Craig's sons and let's be plain about it, it threatens the life of the other. Craig lost his son Rory last October, his son Pawdy, who's sitting his junior cert and we wish him all the best. Pawdy has the condition as well and it is starting to deteriorate. I just want to play this clip for you.
This is Craig pleading on our programme last week.
I just want this drug for my son Pawdy and for everyone else that has it.
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Chapter 2: How has Friedrich's Ataxia affected Craig Coady's family?
you know, because it is, it is, it is progressing a lot and I really lost one son and the boy's mum is no longer in the house. So, Yeah, look, it's just not right. It's just not right for children to even suffer like this. It's just not right.
Craig's wife, Della, who we mentioned there, has Huntington's disease. Now, Emily Felix has also spoken to me before on the programme, and Emily explained why she wants this drug. It's called Skyclaris, available to her.
Who wants to survive living in a body that is feeling... year by year.
Chapter 3: What is Skyclaris and why do families want access to it?
Like, I certainly don't want to live in a body that just keeps getting worse and worse every year. It's not an equality of life. You wouldn't treat an animal that way.
That's Emily Felix. Well, Fianna Fáil Senator Anne Rabbit is with me now. And Anne, you have been campaigning on this. You have, along with I know Pádraig O'Sullivan, been inviting some of these people to the Fianna Fáil parliamentary meeting so they can speak and have their stories heard. Where are we at with this?
Because all of the reaction I have seen online to the clip that we put up of Craig has been just pay for the drug, just get the drug now. What is the problem? So what's happening?
So what's happening is the drugs group are meeting this Wednesday, is my understanding. I don't know whether Frederick Ataxi or Sky Clara's drug is part of the discussion. They don't publish what drugs are being discussed. But what we do know is there can be one drug, there could be three drugs, there could be six drugs, Clare. How often does that group meet? They meet every quarter.
So we won't have another meeting for another 100 days after this. It'll be next September when we have another drugs meeting on this. And that is the frustration and that is the worry for all of the families that there's another 100 days.
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Chapter 4: What challenges are faced in getting Friedrich's Ataxia medication approved?
What I do know is that further information was sought by the drugs group, which was really positive some time back. And Biogen has submitted that further information. That's the company that makes it, that makes it here in Cork. It's an Irish med drug and we export it to a lot of countries that have already approved this drug.
But it's important to say the information went back in on the 27th of May, the further information. Now, I don't know whether that further information has been assessed. Has it been scrutinised? Has it been absolutely analysed to the fact that it is on the agenda this Wednesday? I would love if it was, to be quite honest with you.
I would love if all those questions were answered and we were now getting to the stage that there would be a decision made that would be put to the senior management.
OK, so we don't know whether it's on the list to be discussed on Wednesday. But are you saying to me the likelihood is it's not on the list or what are you? Are you hearing anything?
I'm hearing nothing. 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.
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Chapter 5: How often does the drug approval group meet and what are the implications?
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.
And are you getting anywhere? I mean, I know Mícheál Martin is meeting Craig today, but what do you think is happening now? Have you any indication that this thing might move?
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. Like as part of a programme for government, we have said early access programmes, please give us access to the early access on this drug.
That's the ask. But now we're saying that this drug costs over 200,000 per annum per person and the National Centre for Pharmaco-Economics is not convinced that the benefit is there to warrant paying that amount of money. Isn't that what the decision is at the moment?
Yes, absolutely. And I would turn around that on its head and I would flip it on the top of a hairpin and say the cost of care for these people who continue to deteriorate, the cost of care if they have to go into residential care is far above that. And Craig Cody, when he was with our parliamentary party, spoke about it. He spoke about the lived experience.
He knows the cost of care for his wife who is suffering and who is dying. who is in residential care in Bloomfield. He knows the cost of care. As a former minister, I know the cost of care. And I know that the cost of care, absolutely, if we do an early intervention, an early access programme, we can prevent it getting to that stage, Clare.
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Chapter 6: What are the financial considerations surrounding the medication for Friedrich's Ataxia?
And actually it'll outweigh it because people can live a more wholesome full life. They can participate in the workforce. And at the end of the day, we prevent people from accessing residential care. So there's a whole campaign around wasted lives. Like we've seen young people under 65 going into nursing homes. We can prevent this by the access, the early access to this drug.
It's in the programme for government. We need to action it. And important to say, this is not a life-saving drug. And Friedrich's ataxia is a disease that will shorten a person's life. We know that. This delays the onset of symptoms, though, doesn't it?
Absolutely. But I go back again to innovation and science. Science and innovation is moving all of the time. So if it can pause or slow down the progression of that disease, over time, science will come along with another solution as well, Clare. To be honest with you, we need to start with what we have at the moment. We know that we have a drug that will slow it down by a minimum of 55%.
So I talk about Aoife Quinn, like Aoife at the moment is mobile. Aoife at the moment has got her speech. If Aoife could get access to this drug at this moment in time or as soon as possible, she would prevent herself accessing a wheelchair. She will actually prevent her speech deteriorating. She will hold on to the functions of her hands.
Yeah, the speech issue is one that I... have really been aware of through speaking to emily who's recording her voice now and paudy craigson they're aware that there's a deterioration there too and they're planning for the day when the voice is gone and you can imagine the absolute frustration knowing that this drug is there that could
possibly prevent that from happening and not being able to get it.
Absolutely. And that's the whole point of this whole campaign. And I have to compliment and say for all of them that have told their personal stories, and they are very personal stories to every single one of them, they have brought it home to roost with me as a public representative, but with the community, as you say, over 600,000 people have looked at your views.
Actually, imagine that Craig's son not being able to ask for a
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Chapter 7: How can early access to medication impact the lives of patients?
And I think that resonates with any of us that are parents, that any grandparents to see your son, your daughter, your grandson, your granddaughter actually deteriorate knowing that this drug is made below in Cork.
How frustrating is it for you to be a member of a government party looking at this very slow process and meeting that's happening on Wednesday? You don't know whether the drug is going to be on there. I mean, you want to just press a button and fix it.
Absolutely. But I feel privileged to be part of a government party as well, Clare, in the sense that we have two things put into the programme for government. It's the early access and it's the review of the reimbursement. I know myself the work that the Taoiseach and the Minister for Health did in relation to GFINISTAT and in actual getting the further information.
And both of them met with their counterparts when they were in Italy to ensure that the company put in further information, that they did the follow up, not just What they did last September when they put in sort of like a scoping exercise about the drug. They actually went and insured. Would you get in your application, lads? Would you give the further information?
They pressed their counterparts. So I feel privileged I'm in a government that I'm able to have the ears off. That will continue. But am I frustrated today on a Monday not knowing what's happening on a Wednesday? I'm as frustrated. I really am.
Yeah, the boss of the National Centre for Pharmaco-Economics, Professor Michael Barry, will remind us time and again, we don't have an unlimited budget and his job is to look after the budget that he has. I mean, do you see that he has a difficult job to do?
Absolutely. But I also think that that whole process that Professor Michael Barry has to stand over and review, I think it has to be totally reformed completely in its entirety. I think we're out of kilter. with how we have, like we set 180 days and I know that the Minister for Health is trying, she has put them all around the table trying to work to that 180 days.
But this drug, Skyclarus, is 510 days in the cooking pot.
That's a broken system.
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Chapter 8: What actions are being taken by government officials regarding drug access for rare diseases?
These people, it's the difference between walking and sitting in the chair. It's the difference between hearing and not hearing. It's the difference between having a voice and losing your voice. So I suppose privileged, yes, to be a governor within government because I have to advocate for the people who don't have that voice, Clare.
Then on the other side of it, you have the drug companies and we're often told we're at the end of the supply chain, sitting out geographically where we are. Also, our size makes us not very powerful. And why is it that we're not negotiating a price on an EU level for these drugs?
I couldn't agree more with you and we should be. And I think if I was to make one call with on the Taoiseach or the Minister for Health. within their EU presidency. We should be prioritising this.
We should come out of our EU presidency with having put in place a collective where we can do national bargaining when it comes to orphan drugs and rare diseases, because someday a drug will be produced here and we might have only one because of our size of a population. And Professor Michael Barry will turn and say he can't approve.
And the senior management will say they can't approve because of the cost basis of it. And we then need to be able to collectively work with all of our other counterparts in Europe for that small percentage to be able to deliver for people. I can't put a price on a life. I don't think it's right that we should be saying to Professor Barry, you have to as well.
I think we need to do collective bargaining right across the EU. particularly when it comes to kids, because I also look at the whole purpose around children and equity of access. We have to look at the whole equity of access, the rights of the child. And are we denying the child the right of access? Because their voice has never been heard till they're 18.
It's all like there's a whole piece there, I think, within EU legislation that should be looked at, Clare.
Do you think, and I'm not talking specifically about the drug company in this Friedrichsitaxia case, but drug companies in general, do you think that when a public campaign like this starts, that they see an opportunity and they put the squeeze on it? on the Irish government to pay top dollar?
Maybe they'll sit back a little bit, and I'm not saying it about Biogen, maybe they'll sit back and hope that the families will drive such a successful campaign that they'll end up getting what they set out as the bottom line. I would hope not in this case.
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