The Debrief
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What is the main topic discussed in this episode?
The Clare Byrne Show on Newstalk. With Aviva Insurance.
It's time for the debrief. We're going to look back on some of the biggest stories of the week. I'm joined by Professor of Politics at DCU, Gary Murphy, editor of the journal Investigates, Maria Delaney, and columnist and also of the communications clinic, Lorcan Nighan. And you're all welcome to the programme. Thank you very much for being here. Thanks, Clare. Do you know the big story that we had the most reaction to during the week was the story about Friedrich's ataxia. And we heard from Craig Cody, who told us about his son, Poddy. Poddy started his junior cert this week. His condition is really deteriorating. And Craig had another son, Rory, who sadly died last September, also of Friedrich's ataxia.
And Craig wants access to this drug, Skyclaris, which is available and has been funded internationally. in many countries across Europe, but not here. And there's this big debate over whether we should just, regardless of the cost, pay for this drug, which is so desperately needed by these people, or whether we should hold the line. Gary, what's your view on it?
It's a tricky case simply because the National Centre for Pharma Economics, which the government relies on in terms of the buying of drugs, as far as I understand it, is not sold on this particular drug. But Mr. Cody and anyone who listened to his extraordinary interview, which was clear, couldn't but be like heart-torn at the desperate situation with the death of his son. of his son Rory and good luck to his other son Paddy doing the junior cert this week which I'm sure must be a stressful enough event in and of itself and as a citizen of the state if it was my son I'd want the state to pay for it and I can well imagine why Mr Cody is the same now The evidence apparently, again, I'm just listening to your show and reading up on it, seems mixed.
Mr. Cody talks the fact that this has made a huge impact on the lives of many people across the globe. And then other people are not so convinced that it, because it's a very expensive drug. But my sympathies are with him. And my view is that the state needs to be looking after its people. And, you know, as a law-abiding taxpayer, I think Mr. Cody deserves the...
What story generated the most public reaction this week?
the support of the state. So my sympathies would be not just with him, but with the fact of making drugs available if they are going to make a difference to any citizen of the state.
We had Pádraig O'Sullivan in as well during the week. He's the Fianna Fáil TD who has been pushing for these drugs for rare diseases to be funded. And he made the point that there's an awful lot of money coming into this country, Maria, from the multinational drug companies. And we had those figures this morning in the Irish Times, which have been filed now public filings in the United States. And we were talking about, in some cases, over a billion dollars coming in here. And we're quibbling over the price of this. Now, I get that an assessment is made on efficacy, but it has been shown to be effective in slowing down the disease for some people.
Yeah, and I suppose when you think about if you have a progressive disease, anything that will stop that disease or slow it down, even if you currently will still have the symptoms, makes a huge life difference for people, especially if you get it before they actually have the symptoms. So you're thinking about long-term people starting it when they're 16, that kind of thing. You also have to look at, I know people are asking for the government to fund this, But there is a need to push for change to negotiate prices on an EU block. We co-published an investigation by Investigate Europe in 2024 and it looked at the CF drug negotiations and that's Vertex. And it found that kind of the secret deals negotiating with each country really favours companies with treatment monopolies like this drug for Fetrexataxia.
And also it favors richer, larger nations. So countries like Ireland miss out. Now, they weren't because of the secrecy, weren't able to find out how much per patient the CF drugs were costing.
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Chapters
6 chapters
1
What is the main topic discussed in this episode?
0:01–2:17
2
What story generated the most public reaction this week?
2:17–4:13
3
What challenges do families face with rare diseases and drug access?
4:13–5:43
4
How does the healthcare system assess the cost of new drugs?
5:43–11:09
5
What are the arguments for and against funding new treatments?
11:09–16:11
6
How do negotiations for drug pricing impact patients?
16:11–21:05