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Chapter 1: 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...
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Chapter 2: 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.
But they found that in France it was 71,000, Italy 81,000. And then if you look at the poor countries like Poland, well, this was back in 2022, 109,000, Czechia 140,000.
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Chapter 3: What challenges do families face with rare diseases and drug access?
That's extraordinary, isn't it? Yeah, exactly. And it's this unfair balance of poorer, smaller countries. I know Poland isn't small, but it would be considered one of the poorer countries losing out and the richer countries getting a cheaper drug.
Yeah, and we're also the end of the supply chain, aren't we? You know, geographically as well. And then in terms of our size, we're such minnows. I have a clip here of Craig from the programme during the week pleading for access to Sky Clarice from Polly. Just to get an idea, Lorcan, before we hear from you, of how desperate Craig is.
I just want this drug for my son, Paddy, and for everyone else that has, you know, because 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.
Della, just to remind you, is Craig's wife and she has Huntington's disease. Lorcan, what's your view on it?
Look, it's just such a desperately sad story, desperately sad interview. How could you not want, even if it's a small increase in the quality of life of a son and even if it's a small chance of that increase, whatever you think of it, how would you not want that to happen?
You have to look at the system as well, that it can't always just be down to the strength of the advocacy, the strength of the anecdotal evidence that comes forward. You have to look at the system. And when you look at the Irish system for this, we quite obviously over-index on cost-effectiveness and under-index on actually approving the drugs and the ability to get the quality of life.
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Chapter 4: How does the healthcare system assess the cost of new drugs?
I mean, if we look at how we approve the cancer drugs in Ireland, it's quite obvious now oncologists have been telling us for quite some time that we have a very low access to the newest cancer drug.
We had one on this morning. We had Janice Walshawn saying that she is the person who has to stand there and tell the patient, I can't get this for you and I know it will work.
And there have been reports that we have the lowest rates of approval in Western Europe. So that when it comes to the new cancer drugs over the last number of years, there's been maybe 56 new EMA approved cancer drugs. And we've only approved a quarter of those. Germany, Switzerland, Italy, Austria, Spain, Portugal, Luxembourg, France, Iceland, Ireland. approve more than we do.
So either they're all getting it wrong or we're getting it wrong when it comes to the approval. So you actually have to look at the cost effectiveness of it.
But we appear to be over-indexing just on the value because, look, and I don't blame the department of the HSE or the department within the HSE that's doing this because they're obviously, they're doing the best job they can in the metrics they're given.
Well, that's what they would say that their job is to mind the budget, you know, and to work within that budget.
And therefore, I think we need a shift in the government approach to this, which is saying, yes, we need to look for value, but that's not the only thing we need to be looking at. And if we are a relatively wealthy country and if we are a country that has to make decisions on where we spend our money, maybe we should say, look,
even if it is a balance of saying, look, we might be overpaying a bit or we're not 100% sure of the efficacy of this or look, maybe one in two of these drugs will fall through. Let's go to the European average and let's just take the risk of funding this because it could have a big impact. So we're slow to approve them in the first place. We take about two years, which is too long.
And then we are also less likely to reimburse them when it happens. And ultimately, governments make choices. And the advantages we're going to get as a country and globally from AI and from the advances in tech, the only advantages we're going to see is in healthcare. I think we know that. AI isn't great, but there's going to be advances in healthcare.
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Chapter 5: What are the arguments for and against funding new treatments?
So when I heard Elaine speak about Oisín because her son is 26 now and I think he was in college or like kind of trying to live his life, trying to get on with things, not have to think about his condition, I'm sure. Obviously, it's part of him. But like the last thing you want to do is have this broadcast and have it like have news like, say, in December when the MPs,
rejected the or said that it wasn't any value for money they actually said there's no price at which it can be cost effective which i was quite surprised about um because of the well what cost on a life that's that's true yeah no it's not a life-saving drug no yeah no i listen clearly to your interview but it can make a big difference to a person's quality of life and that's the
issue.
Now, I would say, sorry, I just would say we do seem to me to have a minister who is not beholden, the Minister for Health, who is not beholden to bureaucracy and is not afraid of consultants and afraid of pharma companies and the like. And I would have, and I have had hope for a while that she will make a difference.
And I think she is, and I never heard her talk, Jennifer Calmark-Neill, this is talk about private-public dichotomy in maternity care, would, I think, think that this is a woman who has patience at heart.
But just going back to what you were saying about the toll it takes, is it that the only thing people want to talk to you about, Maria, when you're a patient advocate is your health condition?
I think that's it. Like, say, whenever I was a patient advocate, I actually purposely changed my name when I was married and stuff because I wanted to move away from that and not have that on me as a journalist. That sounds very strange. No, I can understand that. But I didn't want to be completely labelled with that condition and be like, oh, that's who you are.
And that's why, like, I suppose in my head, I was like, oh, that's why people are asking me to, like, say, go on the radio or things like that. So I've never really talked about it. But I think you have all these things and the emotional toil then every time rejection comes from the government or funding comes, like your whole week is kind of distraught.
And then you have to pick up yourself and you have to have all this energy to try and campaign, go on the radio and everything while also trying to live your life and get on with things. So it's just huge on families and on patients. And it's not something that people should have to put themselves through again and again.
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Chapter 6: How do negotiations for drug pricing impact patients?
Yeah.
Yeah, well, I live in Donegal, so this would be extremely difficult to enforce. I think people would just have no social lives because they'd have to get their parents to pick them up at 3am to go out and stuff like that.
So as I didn't grow up there, I grew up, actually, I went to the same school as Cintia Nibirke, so I was kind of surprised that, like, because she's kind of probably would have had to drive into town to go... places when she was young and stuff like that. Like one of the things actually that benefited me was I didn't drink. I was the designated driver when I was in college and stuff.
But I suppose just going back to Donegal, like there is a huge problem with people dying on the roads, like young men in their 20s in counties like Mayo and Donegal are disproportionately represented in road traffic collisions. I was in the RSA there last month. And Donegal this year has around 10% of road deaths and only 3% of the population.
So unlike a lot of those people were in there, like last month, three people died in their 20s and 30s.
So you're saying something has to be done, but maybe not this?
Yeah, and, like, there has been huge talk about this in Donegal, just considering, like, especially last month when there was that weekend, devastating weekend in May, and councillors there are calling for measures like average speed cameras, which I think is, like, people do slow down, I think, when, well, as far as I know, with the average speed cameras, and also more locally-led safety campaigns.
So you very rarely would see, like, Donegal County Council, let's say, putting out a safety campaign about certain areas or certain roads or trying to call people to slow down or even school campaigns and things like that.
The average speed camera idea, I think, is one that really does affect how you drive, doesn't it?
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