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Chapter 1: What is Friedreich's Ataxia and how does it affect families?
The Clare Byrne Show on Newstalk with Aviva Insurance.
Now, some of you listening today might have heard our interview with Craig Cody yesterday. Craig spoke about his 16-year-old son, Pawdy, who's living with Friedrich's ataxia. Let's take a listen.
I just want this drug for my son, Pawdy, and for everyone else that has, you know, because it is, it is, it is progressing a lot. And I already 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 leave them suffer like this. It's just not right.
Craig referring there to 13-year-old Rory who died last September. He also had Friedrich's ataxia and his wife Della very sadly has Huntington's disease and he's calling for action on access to new medicines like Skyclarus. It's not available to the Irish public.
that have Fidrix Ataxia in America, Australia and in Europe are on this medication and it's working for them. So obviously it's down to money with the HSE. It is a costly drug, but, you know, it's not easy, clear to be here every day and to see your son can only walk 10 minutes and, you know, walk like a drunken child, to be honest. He no longer plays with his friends. He doesn't go out.
If it's down to money with the government, you know, and the HSE about children, well, then we're in a sad place.
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Chapter 2: What challenges do parents face when seeking treatment for their children?
Look, this drug is even in Cyprus.
That's Craig Cody there. And I'm joined in the studio by Pádraig O'Sullivan, Fianna Fáil TD for Cork North Central. But before we speak to Pádraig, I want to go to Elaine Pollard, who's on the line. Good morning, Elaine. Good morning, Clare. It's lovely to talk to you, but you're dealing in your family with a similar situation to what we heard about from Craig yesterday.
Yeah, it was like Craig's story is such heartbreaking. And I just wanted to offer my sympathies to Craig and his family and the loss of his son. And that no family should have to go through that. And we're living it as it is. Our son, Oisín, he's 26 now, going to 27 in October, was diagnosed when he was just coming up to nine years of age with Friedrich's ataxia. And how is he doing now?
As we say, he's had good days and bad days. He's doing good. Unfortunately, he uses a power chair to get around. His mobility has decreased. He has slurred speech. He has scoliosis. He was diagnosed, when he was diagnosed with Frederick's Taxi, he was diagnosed with the cardiomyopathy, a heart condition.
And then about two years after that, he had to get fitted with an ICD, an internal defibrillator, to keep his heart at a regular beat and that. And the year before he got it done, he had to carry drugs.
a defibrillator it's everywhere we went just in case that he went into cardiac arrest and that but he's trying he's doing his best he's went to school college working part time and trying to keep going and keep his strength and independence and as much as he can with the support of people around him and he's great support around him and he's a very determined young chap.
And have you looked at this drug have you been told by any medical professional what it might do for ushing because it doesn't and we know this and it's really important to say it it's not a life-saving drug it's not going to reverse any of the conditions that you have described there but it will slow down the progression won't it?
Yes, it is shown that in the studies and people that have been on it in the EU and America, we followed it from 23. And then at Christmas in 24, when it was released in Europe, we thought that, great, this is now hopefully that we have something for us and us and has something to hope for. And we know it's not a cure, but it would slow down.
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Chapter 3: Why is access to the drug Skyclarus a pressing issue for families?
the progression and keep what he has now and that's all they want is a chance to live their life and be and live to their what they can do and this drug slows down the progression it has 55% success rate in it and like how many stories do the government need to hear heartbreaking stories from families and FA sufferers out there before they realise that this drug needs to be reimbursed
And how, I mean, I said this to Craig yesterday, you know, you make a huge decision to talk about your personal, private family issues and what you're going through in a very public way. How has that been for you, Elaine?
Well, since Oisín and his friends decided after Christmas, they went to Dáil in February, the five of them, and along with us, supporting them to fight their case and bring their case to the ministers. And it's great because Frederick's Taxi is so little known about it. It's great that people get the full understanding of it. But it brings up all your emotions again of when he was diagnosed.
Like a little chap of nine years of age being told he has this life-threatening disability or disease and there's no cure. And now there is not a cure, but a preventive that's going to slow it down, that's going to help Bushina and the rest of the Friedrichstaxia patients. To live a life, they're entitled to live a life the same as any young person.
And as a parent, that's all you want for your family is to be independent, to live. And you want to be able to mind him and nurture him. And it's out of our control. And it's heartbreaking, like every day looking that he's losing a little bit because it's progressive and it's slowly progressing.
Like he was able to walk, then he used a rollator and then he used a manual chair and then he used an electric wheelchair. And now his speech is worsening, so we were looking into getting his voice recorded. But Uisín is a witty, caring young man, fun-loving, loves meeting his friends. He's great friends, great family support. And anybody that has met Uisín,
You'd be only too grateful that you've met him or you have him in your life because he's a wonderful young man. And it's heartbreaking as parents to look at him every day struggling and his determination. If we had to get up in the morning and do what he has to do every morning to fight, to get up, to get dressed, to go to work, go out, enjoy life.
as much as they can, we wouldn't be able to do half of them what they have to do. And ministers and the government and the HSE need to step up now. Time is running out for these young people.
The other side of this as well is, you know, you describe what Oisín goes through on a day-to-day basis. There's that fight. It's then you have to ask yourself, you know, do I have the fight in me now to push to get this drug? Because that's what you're having to do, you know, to push yourself to speak publicly about it, to have these meetings, to try and raise public awareness.
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Chapter 4: How has Elaine Pollard's family been impacted by Friedreich's Ataxia?
But typically, just to give your listeners an idea, under the Health Act currently, all these drugs are meant to be scrutinised in 180 days or fewer. But typically, in the case of rare disease drugs, we see that Ireland, I think the most current statistic was it takes 814 days on average to assess a rare disease drug.
That's not acceptable, is it?
No. That's not acceptable. No. So what I've been calling, and I actually published a bill back in 2021,
So I suppose the easiest way to explain this to people is if you come up, if you're a drug manufacturer and you come up with a new cough syrup or a new, you know, a drug that's, I suppose, available to maybe a million, two million people in a market like Ireland, that drug is assessed the exact same way as the drug that we're talking about here today, Skyclarus, which might only affect a couple of hundred people.
So when it comes to economies of scale, when it comes to investment and all that, obviously that cough syrup, whatever, might cost 5, 10, 15 euros. But the drugs we're talking about here cost obviously tens, if not hundreds of thousands of euros.
Do you have a figure on it per patient, what this Skyclarus drug costs?
We don't. But look, again, it's all commercially sensitive, but it ranges in between 100,000 to 300,000 per patient, depending on their condition. Per year, is it? Per year.
Per year.
And we're talking about around 200 people who would need this drug or who it might be beneficial for?
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Chapter 5: What are the potential benefits of the Skyclarus drug?
And if you have a view or if Friedrich's ataxia is an issue in your family, do let us know.
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