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01:12
E aí There's about 1.5 million people expected to travel to Spain to get the 100% eclipse.
01:47
And why not? It's nice to be excited, isn't it? Private yachts as well are being rented and leased with catering on board. I mean, it's absolutely mental for the day that's in it. But make the most of it. There's a bit of clickbait in the English Times this morning where the headline says, Don't use the dishwasher during the eclipse. So we read that this morning and said, why? What impact would an eclipse have on a dishwasher? But of course, that's just a bit of clickbait. It's nothing to do with just the dishwasher. It's any electrical equipment at all.
02:18
They're saying, and how do I put this without sounding too technical, but they're saying the eclipse could knock out E aí On high alert is one of the red top stories regarding the weather. It's a very rare phenomenon that we would have had a summer like we've had in a long, long time.
02:50
And the next 48 hours, as I've just said in the weather reports with regards to today and tomorrow, that's where you're looking at your 28 degrees and heading to the beach and doing all sorts of things, getting out in the outdoors. More on that a little later on because it was in town yesterday. It looked absolutely gorgeous. It really did. In particular, Fitzgerald Park. What a beautiful place, particularly when the sun is shining. At the front page, we're making the star this morning. The headline goes, Guardian Angel Save My Boy on the M50. That's a quote, actually, in many of the papers this morning from my interview.
03:22
com a mãe do lad que estava inocentemente driving his car quando ele foi smashed into by all those teens. It's a front page. We're making the inside pages of all the paper. The front of this morning's star. And we're talking about the Toyota Yaris with the 18s on board and hit the Skoda being driven by Craig Fox. And of course his mother spoke to me on air and many of the papers are picking up on that this morning. But I have to say, I was absolutely devastated for all of those people who were living with Friedrichs ataxia and all of their families because everybody was so hopeful that yesterday, I have to say, the right decision should have been made.
04:03
It wasn't made. And the HSC drug group yesterday recommended that Skyclaris should not be publicly funded for the treatment of Friedrichs ataxia. I think it's cruel. I think it's cold. I think it's a very, very bad decision and the wording is just so, I think, to be honest with you, to be honest, I think it's so disrespectful in a country with so much money and, you know, as we found in recent weeks, Tax returns were unexpectedly higher than they thought. We're not short of money, we just don't know how to spend it correctly.
04:35
But to use terms like it would be poor value for money must be very hurtful for people living and suffering with Friedrichs ataxia. This drug could slow down A progressão desse disease e disorder por 50%, que technically gives people twice as long to live. É just awfully sad. I'll talk to Craig Cody a little later on this morning. And you'll recall all of this started with Craig Cody in conversation with me on the air regarding the fact that his 13-year-old son, Rory, died last September. And now his older son, Pawdy, who's only 16, is rapidly deteriorating with regards to this condition.
05:11
Então, mais sobre isso.
05:40
. . . .
05:58
e ele tinha umblemished work record e ele disse que ele fez o seu trabalho e ele fez muito bem, eu acho que ele deu evidence que a mãe do autêntico tinha engajado em abuso e confrontacional interação com ele sobre onde ela era sua filha Apparently she wanted him to sit at the front of the bus and that's where all that kicked off and apparently Mr Curley said that it was his practice that children should sit further back on safety grounds. Now Mr Curley was 65 at the time, couldn't find other work.
06:30
. . . . . .
06:54
Meanwhile, other forms of transport in general make the papers as well, because come September, these reductions, the shaving with regards to excise of diesel and petrol, like those cuts shaved 32 cent off a litre of diesel and 27 cent off a litre of petrol. You will recall the mass protests by farmers and hauliers. So that mail this morning is saying that fuel protests are threatening to loom again. As the pump prices continue to soar, you're looking at least 192, perhaps higher for diesel now, and at least, at least, probably higher than the 184 that they're talking about for petrol.
07:31
I would suggest 188, 189 in places.
07:35
But anyway, come September, if you take, say, for instance, a litre of diesel and you add on the excise that was taken off, that brings it to 220 or even higher.
07:47
So that's what's expected to happen come September and I'm curious as to whether there will be more protests as a consequence. And then other forms of energy that drive things or make machines move is a story that makes The Examiner with the 328,000 households in the republic now who are in arrears E aí .
08:20
. . .
08:44
To be quite honest with you, as in, we just can't afford to have children. The days of four or five or six are well gone now. But the stat is that four in ten women who gave birth in Ireland last year had a cesarean section. And they're saying there are more complex pregnancies now... In lots of different reasons, there would be complexities with pregnancies, but never more than now. And also on top of that, you have more first time mothers and older mothers. And that's why there are more interventions regarding cesareans. There were 55,000 births last year.
09:16
And of those births, nearly 43% of them were cesarean section. If you think we're alone with regards to issues regarding e-scooters, deaths, injuries, catastrophic brain damage, we're not. Because the English papers are talking about it this morning with the Telegraph delving into it in quite some detail, talking about the average age in the UK of those affected by injury as a result of e-scooter crashes or whatever, up to and including death, ...or catastrophic head injuries.
09:47
They talk about the fact that the average age of those injured or killed was 12... ...and some of them were as young as 10. And 2% of them were wearing helmets. It's crazy. It's just absolutely the Wild West out there. But we are not alone. I think it's really strange that on a plane full of people, including all of the press... . . .
10:31
that the plane would be bombed. But I was just curious when I read that and saw that story. What about everybody else on the plane? Do they not count? Are they of some kind of less significance to the president? He says he believes to be He believes to be Iran's number one target. And an audio yesterday says he likes to be number one, but he'd prefer to be number one on TikTok as opposed to a death threat. Kind of says a lot, doesn't it? Give us an example of how politicians are so touchy-feely about what people think about them.
11:06
And they are so conscious that back in the day it was... ... ... ... ...
11:37
... ... ... ...
12:02
E aí This is just amazing. For those of you that play golf, right?
12:35
I now know how to say the word Worcestershire properly. Apparently, it's Worcestershire. So, in Worcestershire, there's a golfer who's hit a 411 hole-in-one. They believe it's the longest such tee shot in British history. And it's a chap by the name of Matthew Vigors. He was frozen to the spot when he realised that He had achieved something that was a 1 in 6 million albatross opportunity in the par 4 in Birmingham.
13:08
He said, the lads ran over, we belly slammed, we high-fived. It was a moment I will never forget for sure. It was brilliant. We were shocked. It was 411 yards into the cup. Absolutely astonishing. They say, apparently, that it had a lot to do with the heat of...
13:28
em more ways than one also the fact that the ground was so dry and hard the ball just kept on traveling and traveling and traveling and the air was warmer and it ran faster through the air it's a fascinating story and it makes the papers today as those of you head out for now a bit of golf you'd never know something like that might well happen with you guys this weekend as you puck on the small ball text 0868104106 get on to Prenderville now 0818104106 the Neil be part of the conversation text 0868104106 so devastating news for around 200 people around Ireland living with the condition and their families as well I'll talk to Craig Cody in a few minutes time and also to Emily Felix who's actually taking the Irish state to court with regards to this it's a real cruel decision it really and truly is and people are devastated and also members of the public are really angry about it Jackie good morning
14:23
Good morning Neil, good morning.
14:25
What do you make of this decision?
14:27
Neil, I'm absolutely devastated. I tell you the truth, I watched that man's video last night and I actually cried with that man. I'm a grandmother. I'm a mother, a grandmother and if it was my child in the morning I would be screaming my head off for help. That poor man has buried one child in He's a sick wife. I mean, what kind of people are in Ireland in the jail to allow this to happen to a family?
14:57
They've go fund me for dogs. I mean, in all fairness, I'm so, so sad. That man must be absolutely out of his mind with worry to lose another baby.
15:13
It's 280,000 per patient per year. And the centre that made this decision, the drugs group, and made the recommendation not to fund it, say it's poor value for money. What price do you put on a life?
15:28
You cannot, you cannot. Not for the person that owns that child. There is no price in this world. I would take a bullet in the morning for my children.
15:38
There is no way on this earth that poor man should have to suffer, Neil. Not for money. Not for money. There's enough money going out of this country. Not at all.
15:50
And go for me. Do you know you said there's 130 odd ... ... ... ...
16:13
Okay, let's have a quick look at that. There's nearly 24,000 children overdue disability assessments. There's 42,000 children on community care waiting lists, tens of thousands, vital speech, language and psychological services. There's 4,500 children on mental health waiting lists. Suicidal children waiting for critical mental health interventions. And there are hundreds and hundreds and hundreds of children with scoliosis and spina bifida languishing on waiting lists, waiting for spinal surgeries.
16:47
And I don't have to tell you that scoliosis and spina bifida, the surgery, the corrective work needs to be done when they're young.
16:54
So what are we doing sending millions of pounds out of this country?
17:00
Are you referencing as an example the 750 million to Ukraine?
17:06
Well outside that there's millions going everywhere. We have children dying in this country. We have people lying on streets with no homes. Like what's going on? You know what I mean? Like what is really going on in this country? Because I have to stop.
17:24
I'm upset this morning. I'm sorry. No, I'm upset on the radio this morning because I can see this man and this man can't leave my mind crying to save his child's life. What is this man begging?
17:36
Well, a decision like that says, really, and these are my words, a decision like that says... Sim, sim.
18:02
And as you said, as we discussed now already, Neil, look at all the other thousands of children. Look at the mothers that are out there and the mind in God help us, very ill children on their own. Instead of putting them into homes and looking after their poor children on their own, they're worn out, they're exhausted, they need breaks, but they can't get up. Because there's nobody helping the Irish. I'm sorry now, Neil, but I'm going to say it as it is. There is nobody helping the Irish.
18:34
And Neil, I have to leave you go at that now because... Just before you go, just before you go, what should happen next?
18:42
Well, the Irish should start being stashed anyway.
18:45
I mean, this child is number one. Number one today, right now. This child should be looked after. And all the other children. I would put all the sick children out first before I put a second complaint about something else.
18:59
Okay, okay.
19:00
All these children need to be helped, Neil.
19:05
I can hear that you are broken hearted and I appreciate you coming on this morning. Thanks Jackie. Other people do get involved. Text 0868 104 106. Craig Cody lives near Budaphan in North Cork. There's very little coverage of this in the papers to be honest. There's a front page sidebar in the Examiner. I couldn't see it anywhere else. And of course we know that his 13 year old son Rory died last September. His older son Poddy is also living and suffering with the condition.
19:40
And the last time I spoke to Craig he was saying que o Pau de Pau de Pau de Pau de Pau de Pau on various platforms over the past couple of months where he said and he pledged to do everything I can I will do everything I can to get the Skyclaris drug to your son and 200 other patients he says the goal is to try and get this over the line as quickly as possible in accordance with the procedures and processes laid out that kind of to me sounds like a promise right it really and truly does to be honest Craig Cody joins me by phone Craig good morning Neil, good morning.
20:22
Everybody is so sorry and so disappointed and I have to say angry. How are you feeling?
20:30
Completely let down. Promises have broken. I was just listening to you there. Yeah, Michal Martin said he'll do everything he possibly can to get this over the line. But now is his chance. We have one more goal.
20:48
com isso, no 25 de agosto, com o Senior Management Agency.
20:57
No, what I'm hearing, it's very rarely the overturn from the Drug Committee.
21:02
So the HSE Drugs Committee group makes their decision yesterday, and then you're saying that would be brought up then at... With the senior management. With senior management in the HSE, but it is your opinion that they won't overrule the decision not to fund?
21:20
Well, that's what I'm hearing. Yeah, it's very rarely they do this. No, I believe, because there was a lady on...
21:27
She was campaigning for the cystic fibrosis at the time and I believe that was the only one that was overturned. And here we are today with cystic fibrosis working magic.
21:39
And the reasons given yesterday, can you just tell us what you understand about that?
21:45
Basically, yeah. Look, Michael Barry was on other... You were on this morning with Michael Barry.
21:54
Tell people who he is.
21:56
So Michael Barry, he's not in the committee, the drug committee. He's kind of, but basically he makes the decision on the drug to reimburse it or not. Yes. Basically, he feels that it's not value for money. But on his, when I was listening to him this morning, there was a lot of uncertainties.
22:26
how the drug works so he's not 100% himself to be honest but the bottom line is that basically my child is not worth the money or your child is poor value for money poor value for money yeah better way of saying it isn't that very that's very hurtful it is it is and you know the party is asking me yesterday evening And Neil, it was just a phase of the day that he saw Maury pass no longer with us in the bed.
23:04
So he feels completely let down. Am I going to say that? Because he's asking me why, why, why. Am I going to say that to him?
23:11
What do you say?
23:12
What kind of conversations do you have? What kind of conversations do you have with Poddy?
23:18
he's just asking me, will I be, you know, will I be fully in a wheelchair in six months, Dad, or, you know, will we have this drug in next month? Because, you know, I can walk a little bit more, as in, he can walk 10 minutes now to 15 minutes, but look, it's, every month, it's ticking. It's, you know, we just can't wait. And, you know, he's, Neil, it was a hard summer.
23:50
It was very... You know, there's not a lot that you can do with him. Like, you know, he can't really hang around with his friends anymore.
24:00
He gets chronically tired and out of breath, isn't he? Fatigue, yeah. Fatigue. And are you seeing a lot of similarities with Pauly that you saw, sadly, with Rory?
24:11
You see, Rory was different, Neil. Rory didn't have...
24:16
as in the walking um he was walking quite fine as I said he had a match that Saturday he was quite fit um so he wasn't showing any unbalance or anything like that um but he's his lower left muscle was thickened um and uh He was on medication for that, but unfortunately the heart stopped and the electric valve didn't kick in. He just passed away in his sleep.
24:49
As with Paul, his heart is fine. Mas eles ainda estão colocando um pacemaker para ele, só para ser 100% seguro que se o seu heart did stop.
24:59
Ok. Então, nós sabemos que o Skyclaris, em si, reduz o rapididade do o descanso de 50%, sim?
25:08
Sim, sim, é 100% verdadeiro, por 50%. E eu falo para pacientes que estão no Skyclaris, em América e em Itali.
25:21
Poland, and they all said it's a game changer.
25:24
What other countries besides Italy and Poland within the EU cover the cost?
25:31
So, you've Latvia as well, you've Spain, Portugal, what have I got there? Luxembourg, Cyprus, even Cyprus have it.
25:47
Okay, so that's a lot to be getting on with. Latvia, Spain, Portugal, Luxembourg, Cyprus, Italy, Poland, Germany and France. All of those countries within the EU think differently with regards to the value of people's lives. None of those countries would deem it poor value for money because they fund it.
26:11
So what does it tell you about us? Sorry Neil, I was told by Podrick, you know Podrick O'Sullivan, that Portugal is the worst country in Europe to reimburse on drugs. And even they do it. And even they pass the Skyclaris. So what does that tell you? And to hear from someone to say uncertainty, uncertainty means I'm not sure, 100% sure.
26:40
Like, has he sat down with patients that are on this medication tablet and asked them, tell me about the drug. How do you feel better? Because I have, and they all told me it's a game changer.
26:55
Do you think that Biogen, that the makers of Skyclaris, have done enough with regards to the price? Am I hearing that they often offer substantial discounts, up to maybe 50% or 60%, but they're not willing to offer that level of reduction?
27:13
Look, I'm not aware of that. There was a price given.
27:19
What I heard earlier, Michael Barry was that there was a price given 280,000 now he said that's the market price but there's always room for negotiations so obviously in Europe the price was knocked down a bit How much? I'm not aware. I don't know.
27:39
Well, the reason he was making that point, he says the current price is €280,000 per patient. Over a five-year period, that would be €116 million. And he says the available budget is €30 million. It really is about pounds, shillings and pence. And it shouldn't be about that. But he's saying it's about cost or budget.
27:59
Basically, he says we wouldn't be having this talk if the funds was there. So, if he had the funds, he would pass the drug. So, he's aware the drug works.
28:12
But was he asked at all about whether or not it was right to put a price on people's lives?
28:21
I can't confirm that. Sorry, Neil. I really can't confirm that.
28:27
Like, the drug works.
28:29
The drug works, yeah. But he's saying it's not value for money. Yeah. So, that's saying that, as you said there, my choice is not worth the money.
28:46
Before that decision, were you very optimistic that they would do the right thing yesterday?
28:50
Well, I was. The fact that they deferred it to the Rare Disease Committee and they had their meetings two weeks ago and they met advocates and people that are living with Frederick's ataxia e cientistas, e geneticistas e tudo isso. E eles foram muito positivos e eles mandaram o documentário para o Drug Committee e disseram que é bom, você precisa passar essa prova, funciona, é positivo.
29:23
Então, eu realmente não sei porque eles tinham essa reunião, um two weeks ago why they deferred it to the rare disease committee for for for yesterday to basically tell the rare disease look no we're not we're not going to um
29:41
Reimbursar isso. E all the millions and millions and millions that is wasted by various government departments that run up to tens of millions of euros. I don't mean to in any way minimise the impact on you, but when we hear about stupid things like bike sheds and all of this kind of nonsense and bailouts for RTE and all of this kind of stuff, it's an appallingly cruel decision. Yep.
30:11
E aí E aí E aí E aí E aí E aí E aí e que pode ser em seis meses ou um ano, ninguém sabe, mas ele está começando a ir para a speech therapist já.
30:48
Então, ele está no mais rir, ele está no mais rir, ele está no mais rir, ele está no mais rir, ele está no mais rir, ele está no mais rir, ele está no mais rir, ele está no mais rir, ele está no mais rir It was a hard summer trying to get him interested in other things.
31:07
So he can't write now. Within perhaps six months or longer, his speech will be gone. Possibly, yeah. His walking is very limited. Forgive me now, but this is important. So he will then use a wheelchair. And what happens after that?
31:23
He could...
31:32
He could be in a home when he's 40, 30. Be able to ask her. Or he mightn't be with us. I don't know. Yeah.
32:02
Every day there's just a leaf falling off of them and unfortunately the leaf has not grown.
32:12
I despair.
32:13
I really do. So that's what the country thinks of us. You know, the people with the money, the government, the HAC, thought the HAC was there to help us in, you know, sickness and, you know, And if they're doing this to a child, like, it's, you know, it's... I actually thought it would be passed yesterday. I was positive.
32:40
And believing with the government that, yeah, they're behind us.
32:45
Maybe their hands are tied. I don't know. I don't know.
32:51
Not at all, man. Not at all. Where there's a will, there's always a way.
32:55
Are you saying that the highest level of government can't intervene in something with regards to state employees and those in different departments? Of course they can. Of course they can. They've done it before. They've had to do it before. Look at the campaign that Vicky Fielding fought for change. So...
33:13
Is this the end of the line now? Or where are we at? Assuming that the drugs group's recommendation that goes to the HSE won't be reversed, that they will say, no, we're not going to fund it. What happens then?
33:26
Well, what I'm hearing is that it can be overturned and Michael Berry and the HSE have to fund it.
33:36
But that's up to the senior management team to overturn it.
33:41
Overturn the recommendation of the drugs group. Yes. So again, you have to wait and hope and remain in some way optimistic that the right thing will be done at that stage. Yes.
33:57
What have you said to Pawdy when you had to tell him the news?
34:01
As I was saying...
34:06
Seu face dropped. O dia do morro, ele estava no longer com ele. Quando ele saw ele, ele estava em casa. Seu face just dropped.
34:18
Você sabe, como ele disse antes, ele disse, eu não afastei de die. Se eu die, eu vou ficar com Rory. É muito difícil. Muito difícil. É muito difícil.
34:31
É muito difícil.
34:32
É muito difícil.
34:32
É muito difícil.
34:36
I'm not afraid to die because I'll be with my brother Rory. I'm just speechless because I think that a 16-year-old lad would be very, very, very frightened of the future.
34:54
I'm frightened.
34:56
Yeah.
34:56
I'm frightened from him.
34:59
You know, and the thing about us, Neil, you know, Eventually, quando eles precisam ter us care, isso custa um monte de dinheiro a week, up to R$18,000, eu acredito, com care like that em hospital. Então, eles não estão olhando para o longo termo, para esses pessoas. Eles estão olhando agora.
35:25
There's a lot of people very, very, very angry about this. Yeah. And saying that people should take to the streets and there should be protests. And this has touched everybody's hearts right across the country. And much of it started with your story regarding the passing of Rory and Pawdy and your beautiful wife in care in Dublin. Much of it started then. But people are wondering what should happen next and how can people help
35:55
Do we do a protest?
35:58
I don't know. It's their house. They're out on break now. So where do you infer? Where do you go? I do want to get... I did do a video yesterday. I did ask people to get onto their TVs.
36:17
I said, this is now when I need the people of Ireland.
36:21
This is when you need the people of Ireland, you said?
36:24
O que é isso? Você sabe, Neil? Você sabe, isso me faz muito angri, o fato de que não... E eu não sou um pouco racista ou algo assim, mas quando você vê R$160 milhões para a guerra que temos nada a fazer, e não havia um comissão set up para essas reuniões para enviar o dinheiro.
36:56
Foi tudo e dusted.
36:58
O total de pacientes para a Ucrânia era de três quartos de um bilhão a data. Sim. Sim. Sim. Sim. Sim. Sim. Sim. Sim. Sim. Sim. Sim.
37:21
That must make you very angry.
37:22
It makes me very, very, very angry.
37:24
What do you think of Micheál Martin's role in this? I gave some quotes this morning. Here are some more of them. And Archie on the 9th of June, he says, we need to get this access to the treatment as fast as we possibly can. He then told Mary Lou Macdonald, getting this drug over the line and we are not playing games. He said, we need to get this decided upon as quickly as possible. There are many, many families out there worried and stressed. He told the journal on the 15th of July, there's an urgency attached to the assessment of the drug treatment rare disease, but that's as much as he would say.
37:58
He kind of stopped shorts on a guarantee on all of those, doesn't he? Or am I reading wrong? He said to you, what did he say to you again?
38:10
Look, I told him my family's story and he was devastated. We did connect because, look, he lost children himself.
38:19
No, I acknowledge that and I'm respectful about that, yeah.
38:21
Yeah, yeah. So, you know, man to man, he promised me that he'll do everything he can to get this drug over the line.
38:29
Okay. Do you think he's done everything he can?
38:31
He hasn't done nothing yet.
38:35
Yeah, yeah.
38:37
He said to you that he will do everything I can to get the SkyClaris drug to your son and to 200 other patients to try this to get over the line as quickly as possible.
38:49
Yeah. And you'd be hoping to move that meeting forward in the June. Look, that didn't happen. That's fair.
38:59
It did happen in July. They deferred it to the rare disease. And here we are now in August and it It's been declined.
39:10
Is there anything you need, people are asking? Is there any way people can help even now? Because it's just the two of you, you know? You're trying to get along as best you can. Do you need anything? I need a drug. You need a drug, yeah. I need a drug. I understand, I understand.
39:30
Yeah, and I just need to get people... Look, if we need to do a protest...
39:36
I'm all for it, but I just don't know where do I target or where do we go. But I am asking, I'm begging the people of Ireland just to get out there and to the TDs and say this is not good enough.
39:48
You better believe it's not good enough.
39:53
It's not just that you're going to tax you, you know, it's probably going to be back to you again in six months' time with another rare disease. The whole system of legislation is...
40:03
Don't they fund the cystic fibrosis intervention drug?
40:11
They do, don't they? Why would a decision like that be made for cystic fibrosis? A lot of it for young children.
40:18
But not this. It's not thousands or tens of them.
40:21
What I'm hearing is with cystic fibrosis, they took up beds in the hospitals. There's only 200 in Ireland.
40:33
But that figure makes it so simple to sort. It just makes it so simple. I mean, you would think on the basis of your story alone, just on the basis of your story, not the others that I've spoken to around the country, and the other 199 or so, but your story alone, having lost one son, you now have been doomed to the possibility of losing your other son. You would think on that basis alone, they would say, we need to do the right thing here on the grounds of compassion for these people.
41:01
Yeah. E eu sei, eu sei, eu sei, eu sei, eu sei, eu sei, eu sei, eu sei.
41:17
I know the Minister of Health, she's seen a game, so I'm really not sure what the story is.
41:22
What she's got to say on the subject, yeah.
41:25
Yeah, yeah.
41:26
Like, we're all kind of pointing at Mehol Martin as well, but, you know, she's the Minister of Health as well, so... Well, he is the Taoiseach, and he is a Cork TD, and, you know, he is aware of your story, you know. He is the Commander-in-Chief.
41:41
Well, Neil, he has two weeks now, so... He's spoken to me in Corp. He needs to put his words into action now. Okay. I'm begging him now to please overturn this decision because the drug does work. And it's only for a good government or a good businessman to sit down and say, right, we're wasting money...
42:10
a, a, a, a, a, a, a, a, a, a, a, a, a, a, a, a, a, a, a, a, a, a, a, a, a, a, a, a, a, a, a, a, a, a, a, a, a, a, a, a, a, a, a, a, a, a, a, a, a, a, a, a, a, a, a, a, a, a, a, a, a, a, a, a, a, a, a, a, a, a, a, a, a, a, a, a, a, a, a, a, a, a, a, a, a, a, a, a, a, a, a, a, a, a, a, a, a, a, a, a, a, a, a, a, a, a, a, a, a, a, a, a,
42:40
O que é isso? O que é isso? O que é isso? O que é isso?
43:09
Neil Prenderville now. 0818 104 106.
43:10
The Neil Prenderville Show on Red FM.
43:14
To the phone lines we go. Peter, thanks for holding. Go ahead.
43:17
Neil, how are you doing, mate?
43:18
Good, good, good.
43:19
It's absolutely appalling, listen to that man, dear, about his little child. It's absolutely disgusting what's going on in this country. It really, really is. There's millions going out of the country to support wars that's killing people.
43:34
And they can't. E o que o que o que o que o que o que o que o
43:55
Desi says Craig needs to get the people on the street to object to this decision. He needs to start a campaign. The people of Ireland will support him. He says that it's the government's job to protect the life of its citizens and under the constitution, the life of its citizens must come first, must be protected.
44:10
Yes, 100%, but it's not happening, Neil. It's not happening. The people, what the press protesting do, they were protesting, you saw me protesting a couple of months ago and the tolls were sent down there to move them off the streets. Every taxpayer in the country should take a day off work, no taxpayer, for one week. Something like that, where the government feels it and the government hurts. This is appalling, what's going on in this country. I'm not racist, Neil.
44:41
I love helping people, but enough is enough.
44:44
There's millions there for everyone else. You have people coming into the country, Neil. They're living in iPad centres, but they're able to drive around the streets in BMWs. I don't understand it. I can't make it out. There's millions there. There's millions there for people that don't want to do anything. If you want to come into our country, Neil, you should work and be looked after.
45:07
No disrespect now, but are you referring also to the Ukrainian students who get free education this year, up to and have done since they came here, up to including a free college education?
45:18
Do we all get it, Neil?
45:20
No.
45:36
It's very handy that a decision like this is done during the summer break, isn't it, as to what would happen maybe in the Dáil? Or would the opposition really give a damn?
45:48
I wonder what the thoughts of maybe people would be with regards to, oh, we know the government parties, Fianna Fáil, Fianna Gael, but how would, say, for instance, Sinn Féin be on this matter? How would the Social Democrats, Independent Ireland, all of the opposition parties...
46:05
Neil, do you see any opposition parties protesting or striking about these? You don't. They don't care. None of them. They don't care.
46:15
They're looked after. They don't mind.
46:18
The government will come out, Neil, and they'll have a referendum. No problem whatsoever if they want something passed. Why didn't they put it to the government if we wanted to give millions a war?
46:30
Why didn't they put it to the public?
46:32
They didn't. We voted them in. We should have a say. It's our money. I'm a taxpayer. All my life.
46:39
All my life, Neil. I paid my tax. Paid for my house and paid to rear my children. And what did they do? They penalized me. They penalized me with taxes, universal social charges tax, house property tax. They penalized me the whole way along the line as much as they can.
46:54
Do you feel like you're the fool for going out to work, I suppose, a lot of the time?
46:59
I got to work for me, Neil. I got to work for me. I did that a rock network and I got to work for me. I got to work for my head. I love going to work. I have no problem with that. But I think there's a lot of people who don't work, Neil, if they took it off them and gave it to the people that genuinely can't work and give them a better quality of life. It's just a very... This gentleman here, this gentleman here, Neil, it's disgusting. It's very cruel. It's disgusting. Listen, they spent £40 million bringing a fella back into the country, as you know, a couple of days ago, and they'll spend millions keeping him in their lives.
47:28
I don't actually know what that figure was, but I do know of other ones, though.
47:32
Well, there you go.
47:34
. . .
47:51
Well, that's because you go out to work in the morning and you pay your taxes and also with the VAT, apparently the VAT returns were enormous. They weren't expecting such a huge response, or sorry, such a huge increase to the exchequer. It was totally unexpected.
48:05
All right. Why don't a lot of the taxpayers in the country decide to say, we're taking a day off this week. I'm not paying no tax. We're taking a day off with no pay.
48:14
Okay, good call, good call. Appreciate it. Thanks, Peter. A lot of people incensed. Pick up the phone, get involved. Text 0868-104-106. 0818-104-106 for an old-fashioned phone call. You can also send voice notes. It's the same text line, but on WhatsApp. 0868-104-106.
48:37
. . . .
48:57
E aí E aí E aí . . . .
49:48
That's what it says up online and you can do so. GoFundMe.com forward slash family fighting the unthinkable. The Cody family. So there is a GoFundMe. Can I just give you the actual stat though? R$280,000 per patient per year over five years would mean that it would cost the exchequer, which is the Irish taxpayer, who wouldn't begrudge it incidentally, R$116 million over five years, right? And the story that we're hearing now from those that make the decision is that it doesn't represent good value for money.
50:24
In fact, doing that is poor value for money, which is cruel actually. E aí You know, money that was spent for jobs that weren't done or money that was spent on things that cost ridiculous amounts of money.
51:00
So if you looked at the Irish Rail IT system that failed, where they had to write off 50 million euros spent on that. E se você olhar para os buseses, os electricos buseses, eles estão larguindo. Os electricos buseses são dois anos agora, já estão parados e não têm cargos. Então, se você olhar para o custo dos buseses e o custo dos buseses e tudo isso, é 80 milhões de euros.
51:24
Se você look at the Irish Rail IT system at £50 million and the electric bus fiasco at £80 million you put those two together the waste, this money was spent £130 million on the IT system for Irish Rail and the bus fiasco. That's 130 million. Just those two examples of chronic waste would cover, and there'd be change left out of it, there'd be change left out of it, would cover the 116 million needed for five years for Friedrichs, Ataxia and Skyclaris.
51:56
130 million wasted on the IT and the electric buses, 130 million, and 116 million needed for the next five years for the drug. So think about it when you put it like that.
52:08
No other text then this morning. How much is the government spending on each criminal in prison per year? Or each Ukrainian student getting free education every year? Why can't they look after the Irish, says Ashton Middleton? You should mention Micheál Martin on the radio now and demand that he resigns. All the money going to Ukraine and they can't sort out kids. It's an absolute disgrace, the country jokes, says Gerry. I'm so angry listening to this poor man chatting with you, begging for the government to help. . . . .
53:00
Who actually sets the prices of these medicines? Well, those that manufacture them, those that create them. But you are right, actually. You talk about people, you know, money in Ireland seems to be so unevenly distributed. And Craig Cody goes to work every morning. He gets up at 5am every morning. He goes to work. Ele não está sentindo lá dizendo, o que é isso para mim? Você sabe, grab all, take everything. Esse cara vai para o trabalho. É decisões como esses que estão serem divisão em Irlanda agora.
53:33
E é a parte do racista ativo, eu acho. O governo é 100% responsável por causa desse divide em Irlanda, giving milhões e milhões para a Ucrânia, looking after imigrantes before Irish children. Não, não, não, não, não, não, não, não, não, Get involved.
54:09
Text 2868 104 106. Pick up the phone 0818 104 106. Dee, good morning.
54:16
Good morning.
54:17
You have the floor. Go ahead. Your thoughts.
54:21
Well, I get a six-month infusion of a drug called Aquavis.
54:26
For multiple sclerosis.
54:27
For multiple sclerosis. And say two to three years ago, I decided I wasn't going to take any more drugs because I couldn't see them working. The cost was not to me, but I just, again, I was very suspicious of what I was putting into my body, so I stopped. Then I had a change of neurologist and she talked me into taking this drug, Aquavis. I get it once, and I get it twice a year. It's an infusion. It costs £28,000 per annum. And the chances, like she said to me, there is a 20% chance of the slowdown in your progression of MS.
55:04
20%, a 1 in 5 chance of it actually having a positive impact.
55:09
Exactly. So how, in God's name, can they justify denying Skyclaris, which has a 50% proven efficacy?
55:19
It has a 100% guarantee to slow the progression by 50%. Does that make sense?
55:27
Yeah, so that's proven, right? And mine is a 20% chance. So they're giving me a drug that is not even a 20% chance. Like MS is so unpredictable that there's no guarantee with any drug. And I understand that. But like... Então, minha droga, me alone, eu costo a state talvez R$28,000 a R$45,000 per annum por esse droga.
55:49
Ok.
55:49
Que eu não sei. Então, o que eu gostaria de saber, há 7,900 pessoas com MS com droga, modificando drogas, certo? Of os 7,900, custando até R$355,000,000 per annum, certo?
56:05
How many of us find our drugs effective?
56:08
Well, you're saying statistically... Hang on a second, you can get to the donate... You donate in a second, but you're saying to me then that of the 8,000 people living with multiple sclerosis, which in itself is devastating, I acknowledge that, the state spends €355 million a year
56:27
221, so per annum it can range from 28,000 to 45,000 depending on which drug you're taking. Okay, well let's take the figure of 355 million to possibly slow it down, possibly by 20%.
56:47
And they would then deem that, and I'm delighted for those in any way, shape or form that it improves their quality of life, they would say that that's good value for money when the Skyclaris option is poor value for money, although it's 100% guaranteed to slow down the progression by 50%. But I can't understand, that's illogical. Doesn't make sense.
57:08
Exactly. Now, I did a little bit of research last night when I heard this news breaking and originally Aquavus was denied and it was said that, you know, it wasn't effective. It wasn't cost effective. The efficacy was not proven to be worth the cost. And I think that was the Roche group, I think is how it's pronounced.
57:24
Yeah, yeah, it is.
57:25
So there may be a chance like that if the producers, you know, go back and they have to renegotiate the price.
57:34
Like, in all fairness, as I say, Aquavis was denied first.
57:37
So what happens now? What happens now? Is this something that must be raised at the highest level of government?
57:45
Can a Taoiseach overrule any kind of clinician's decision or any kind of group or committee's decision?
57:54
Well, if he has a pair of balls, he should be standing behind his words and his promises. As Mr Cody said, he has heard nothing back since... That face to face. Micheál Martin is so good at engaging you eye to eye and you think he's listening, but you hear never again from him. And I have proof of that. He is full of BS and like, yeah, if he had a pair, he would try and overturn this decision because it just, it does not make sense. It's just, it's BS.
58:25
Okay. And now you mentioned something about donate. What was the other aspect to your conversation?
58:30
Well, I mean, I'll gladly come off my aquavis. I had my last infusion like last Wednesday and it was, I actually texted you originally last Wednesday night because I was wired to the moon after being on this drug and I couldn't sleep. And I was like, you know what, like this isn't for me. This isn't working. And then when I hear that Mr. Cody has been denied again, I'm like, I'd gladly get on to my neurologist and say, right, cut me off the octopus. It's a waste of money. And put those funds into something that matters.
59:00
Give it to Poddy Cody and others like him, the little 16 year old.
59:02
And I would implore any other person that's on a life limiting illness, like a lifelong illness benefit. That like, if you don't think your drug is working or you're not getting value for money. I haven't seen my neurologist for two years. so I mean like so for two years this company is making profit off of my decline in health I would ask everybody to reconsider what they're taking and yeah yeah like if it's not working stop it and give it to someone that you know it works because this is wastage it's just disgusting well said thanks Dee thanks Dee mind yourself text 0868104106 by voice note lads Neil thank you for interviewing that man my heart is breaking from his family
59:44
e todas as outras famílias, que é sobre o dinheiro. O HSE disse que não é custo-efectivo. Como, o preço você põe na vida? Eles estão dispostos de dar dinheiro para todos os outros seres humanos sobre este planeta e eles não vão olhar para o seu próprio povo. Eu realmente espero que o povo aqui wakee-se e veja o que o governo está fazendo para o povo aqui. Eles realmente precisam pegar esse governo. Eles não estão olhando para o seu povo irish cidadão que estão pagando taxas têm pagado tax por anos, e nós esperamos que eles estão procurando.
60:18
É por isso que eles começaram a procurar nós. Nós todos precisamos de e-mail os TDs. Eu acho que vocês precisam de e-mail os TDs e as pessoas precisam de e-mail os TDs.
60:30
Ask for a Skyclaris para ser feita para os famílios que precisam. Não são tantos famílios. Eles realmente precisam de isso. Eles serão saving a vida. Eles têm no consciência. They're going off on their holidays. I hope they have a terrible holiday, the whole lot of them, and that these people's lives and blood is on their hands.
60:52
Rodrigo Sullivan, Cork North Central TD, Fianna Fáil TD incidentally. Rodrigo, good morning.
60:58
Morning, Neil.
60:59
What do you make of that? Look, I spoke with Craig last night, sorry, yesterday afternoon after the recommendation was issued.
61:11
Look, it's gut-wrenching. It's inhumane. I've described it as all these things in the past. I haven't changed my mind on that. So, you know, it's hard not to agree with an awful lot of what I've just heard. But what I would say is, you know, and this is unfortunately, when I've spoken to you previously, I go on about the system repeatedly and the legislation is there isn't fit for purpose.
61:31
And even if we remedy the Skyclaris situation, there's another cohort of patients potentially going to face the same . . . . . .
61:55
Yes, and that's, look, I've only seen the HSC press release. I haven't read any full document or anything. Nothing's been issued to us.
62:01
He says, Michael Barry, the consultant clinical pharmacologist, said that these are difficult decisions. If we had an unlimited budget, we would not be having this discussion. It's not an issue whether the drug works or not. It's about whether it represents value for money for the health system. It would cost 116 million over five years and the available budget is 30 million and the gap is too wide.
62:25
E eu disse que antes, o total de drogas budget é sobre R$4 bilhões em este país, e o novo drogas, que ele está referindo a R$30 bilhões, tem sempre que tenha um balanço, e que é algo que nós temos tentado de fazer sobre o ano, para que a maior proporção do existing drogas budget, de R$4 bilhões, para R$4 bilhões. O único que o Michael Larry, eu ouvi ele, eu ouvi ele, eu ouvi ele, eu ouvi ele, eu ouvi ele, eu ouvi ele, eu ouvi ele, eu ouvi ele, eu ouvi ele, eu ouvi ele ouvi ele, A única coisa que ele está fazendo é que 11 países têm já aprovado isso.
62:56
Entre eles, Portugal, Latvia, Spain, Portugal, Luxembourg, Cyprus, Germany, France... I mean, they all would appear, and more, they all would seem to put people first and put the public first and citizens first.
63:13
It wasn't put to him, I don't think strongly enough, as in, why are Irish scientists, why do Irish scientists and Irish farmer economists know better than...
63:21
all the scientists and pharma economists... Because it's not about the science, Padraig, with all due respect. It's not about that. It's about value for money. It's proven. The efficacy of it is proven. So it's about... Am I misreading something?
63:37
Forgive me. No, no. I'm just going by the HSC press release that I got last night and it said there's two things. Yes, cost is a factor, right? But the second thing it also says is that the data basically... They're not fully confident in the data and the trials that they've seen so far. They're saying that it's just not solid enough. That's in the HSC statement as well. So if there was a stronger case... But that's BS.
63:58
All of the countries in Europe are reimbursing it.
64:02
What the hell? That's what I said. And that's what I said on your radio station the last time I was with you. Portugal now, for me, will be one of the countries who are, you know...
64:10
... ... ... ...
64:40
See, I don't want to be quoting legislation here, Neil, because I know how it will land with people. It's not going to be helpful. As for the 2013 Health Act, it's the HSE's jurisdiction, right?
64:52
But why would he say that, then?
64:55
There's always a situation here, and we're coming into the crucial window of it here in the next two weeks, right? This decision will finally be made on the 25th. And this is when most campaigns for these drugs and treatments kind of, I suppose, intensify. And what we need to do over the next two weeks is to ensure that we can create as much, I suppose, support. And you can see that visibly online already. And it has been, to be fair, it's been very strong for a number of months now.
65:18
Do politicians pay attention to that?
65:22
Yes, I think so. I hope so. But ultimately, it's the HSE Drugs Group that will have to pay attention to it as well. And there's very senior, sorry, the senior management team and the senior management team with the senior people in the HSE... who have control and oversee all the budgets and all that.
65:38
But if they don't have a budget for it, right? Can the money not be found elsewhere?
65:44
This is what I said to you. There's £4 billion already spent on drugs every year. £4 billion. And every year, drugs come off patent. Generic drugs are introduced. So there's existing savings that are always generated.
65:54
You're coming into October's budget, Neil. So you're at the end of a budgetary cycle and the beginning of the next one. So trust me, if they want to factor in Any treatment, be it enhanced contraception for women or whatever the case may be, any health thing that's going to be pitched over the next few months, It's all going to be in a window when budgets are decided. So, for me, it's a cop-out for the HSE to say that they don't have the money for it. They've got £4 billion in an existing drug budget.
66:19
I know that, but in parking that, park the HSE and look at the greater government, the big government, the big picture stuff, that money can be found elsewhere. It's always found elsewhere. Time after time, all morning, people are talking about waste. And I'm not addressing this or criticising you because you didn't create any of this. I get that. mas eu tive list after list. O IT system in Irish Rail, R$50 million. O electric busses cost R$80 million. Eles estão languishing. Você está olhando para o e-voting machine, R$55 million. O Covid ventilador, R$22 million. It goes on and on.
66:50
O children's hospital é quase R$2 billion over budget. Money is found. R$750 million goes to Ukraine. That's what frustrates people.
66:58
Waste. I get it. I sit in the Arts Committee and we discuss the Arts Council E o que o que o que o que o que o que o que o Look, to be fair, as I said, I'm watching a lot of the online stuff and the people's support has been phenomenal for Craig and the other families.
67:35
I would ask them to keep that up. I would ask them, as it's been said, look, I've received a number of emails overnight myself from people who I suppose have seen this decision or recommendation issue and they're just disgusted by it. I'd encourage them all to reach out and contact your TDs.
67:51
So if people sit down now and they email mehall.martin at aroctis.ie, Will he know about that or will his handlers deal with it and his advisors deal with it and his admin and he may even be, would he even be aware?
68:08
Whatever about focusing on one, yes he would but I would say email all 160 odd TDs or 70 TDs that are in the Dáil Unfortunately, Neil, this has been an issue for...
68:21
No, I'm saying him because he's the Taoiseach. He's a Cork TD. And he seemed to make... I mean, it's as close as be damned to a guarantee that hasn't been delivered on.
68:33
Well, I would encourage people to email everybody because every TD has a voice. Every TD is meant to represent their constituents. And, like, if we can guess... Like, for five years I was shouting about this and it was a very lone vice. There was a lot of people... I suppose that just dealt with constituents and problems as they come. But the overall system that I keep on about that has to change, like, there's very few people talking about it over a number of years. This campaign now has shown to people that a lot of what we were saying over the last few years has come to pass. And as I said, I don't want another cohort of patients just revisited on them.
69:03
You know, it's inhumane. It's unfair that they have to go out so publicly. It's just not the way that any healthcare system should run. And, um, I would hope that we wouldn't have to do it in the future, but I would encourage people to get onto their TVs and to make sure that they hear the message loud and clear as well.
69:19
And just finally, Padraig, disappointing for you and everybody else, because you did really go put your shoulder to the wheel on this one.
69:26
I'm not throwing the towel. No, I know that. No, I know. I know that.
69:29
I'm listening to what you're saying and you aren't. In fairness to you, I respect that. But apparently it's unheard of that, say, for instance, that the HSE would go against a decision made by this drugs group. This recommendation, they're saying, would be unheard of for them. Have they ever overturned a decision like this in the past?
69:49
It is very rare. I suppose overturn is probably the wrong use of the word, but I get what you're saying. It is very rare that a recommendation would be contravened. But it has happened on one occasion during the Or Can Be campaign. And if you probably recall better than anybody, Or Can Be was a big campaign. And that's why I keep emphasising campaign. Campaign, campaign, campaign.
70:08
And what do you say to people that it's time, after 100 years in power, that Fianna Fáil and Fianna Gael should be turfed out as soon as possible because their track record has been appalling and somebody else should get a shot at it and this is another example?
70:24
Obviously, I would disagree with that. I would think that, you know, in many aspects, look, in this situation, consistently, as I said, we've kind of left the system just either way it was But come 2013, when that legislation was brought in which governs this access to drugs, you know, we took politicians out of the decision-making process and I would hope that in future legislation, like, that we would be able to get that input in extreme or extenuating circumstances that we could have... Took the compassion out of it.
70:55
They took the compassion out of it.
70:58
See, I have to be fair because in 2013 the state had an awful lot less money, right? So... I won't say I understand or agree with it because I don't and that's what I've campaigned for for six years but it was in that context that that decision was made but like as you said fast forward to 2026 we have an awful lot more money than we did in 2013 and these are the things that people and the public care about e que já foi demonstrado, apenas ouvindo o seu telefone-ins e o seu social e-mail sobre as últimas semanas. Isso é o que as pessoas carem sobre, você sabe.
71:25
A campanha, email all TDs, possivelmente take to the streets, start a protest. There's a couple of weeks in it yet. Thanks, Poderic. We'll stay in touch.
71:34
Obrigado.
71:55
We need protest, Neil. I have no confidence in this government. Morning, I'm in Kerry and so touched by this story. I just rang Micheál Martin's office and left an angry message. Everyone should do this. What value do they put on medication? I'm disgusted with the decision, says Brian. Will you ever go away and get Micheál Martin on and ask him how they came to the decision not to fund the important drug for poor potty Cody? What a snake he's turned out to be. The government approves millions for foreign countries and they can justify that. You get him on, you're the man far out. I'm devastated for Craig and his family.
72:26
How can they say that this poor little boy's life isn't worth funding? Can I just address that? Miho Martin doesn't talk to me and hasn't done for quite some time now. And any requests for interviews are refused. And even on me approaching him personally and getting in touch with him personally, any of my...
72:50
Well, certainly any texts that I've sent the man are not responded to. So that would lead me to believe that he doesn't talk to me. He doesn't want to talk to me. And he has got his own reasons as to why that is. But he doesn't talk to me, guys. I've said it before. Don't you think that I would talk to him? He's a Cork TD. Don't you think that he should be talking to somebody on a radio program where he's got like 80, over 80,000 people listening to it on a daily basis? I mean, think about it. I mean, it's insane that he wouldn't, but he doesn't. So, does that answer your question? I mean, if you want me to give out a list of people who don't talk to me, he's not the only one, actually, with regards to the political sphere of people who don't talk to me, but that's the question you asked with regards to me, Al-Martin.
73:27
. . .
73:54
Interestingly, a texter said there earlier on, I'm in Kerry, so touched by this story. I just rang Micheál Martin's office and left an angry message. Everyone should do this. Would people agree that a phone campaign as well as an email campaign might well be the way to go? Your thoughts, please. Text 0868 104 106. Siobhan, good morning. Thank you for holding.
74:16
Good morning, Neil. How are you?
74:17
I'm well. Now, your daughter, do you mind me asking your daughter's name? Is that okay? Genevieve. What's her name, sorry?
74:25
Genevieve. Genevieve. Beautiful, beautiful name. She is one of the 200 with Friedrichsataxia.
74:32
She is indeed and I've obviously been campaigning for this drug very disappointed that we didn't get it yesterday. But I just want to also make a comment about regards to Genevieve's walking is pretty poor, she uses a walking aid and I've been trying to get, she doesn't drive obviously, so I've been trying to get a bus for her, there's a Ukrainian bus passes her door every morning to the school and I've been trying to get that bus to stop for her but I've been told because she's not Ukrainian, my grandson is Irish, they can't stop for him.
75:08
How does that make you feel?
75:11
Unbelievable, unbelievable.
75:14
They wouldn't do nothing for their own people.
75:18
And I'm sorry, no, but I'm not racist in any way. But it's just absolutely disgraceful.
75:26
It's not racist to talk about inequality, inequity and being selective about who is helped and who isn't. That's just, you know, that's just glaringly obvious.
75:39
Yes, exactly. And I've been into the school and they said, Unless the child is disabled, not the mother, they can't do anything for her either. Which is, it doesn't make sense to me, to be honest.
75:57
How old is your daughter? She's 35. Okay.
76:02
My grandson is 10.
76:02
And when was she diagnosed?
76:05
She was diagnosed two years ago.
76:09
And have you seen a decline in that two-year period with Genevieve?
76:13
Oh, definitely. Yeah, there is, yeah. It started to affect her legs at the start. Now it's gone to her arms. She can't write. You would see change in her, all right.
76:26
Okay. Is her mobility, her breathing impacted, things like that?
76:30
Not at the moment, thank God.
76:33
Is she very scared? I think she's just in denial, really. She doesn't really... She doesn't really...
76:46
Ok, não é um grande phone line, mas vamos fazer o que podemos. Então, Genevieve é um single parent, rearing her son, com Friedrichsotaxia, of course, impeding on that. Ela é 10 anos, e ela deve se preocupar sobre a futuro, como você preocupa sobre a sua filha e sua grandson.
77:07
Claro que eu preocupo, sim. Eu preocupo, sim. E, obviamente, ela deve ter um impacto sobre ele também. Porque ele não entende por que sua mãe não está caminhando como qualquer outra mãe. Ele diz, por favor, não come para a escola, porque as pessoas estão rindo o jeito que você caminou. Ele disse isso para sua mãe?
77:26
Sim.
77:31
Now, that's sad that he feels that way, and I can understand it. He's a little 10-year-old lad, but it must be very, very hurtful and sad for his mother.
77:40
It must be very sad for him to see the deterioration, you know?
77:48
Yeah. Do you think there's still time?
77:53
I'm hoping and praying for the 25th that they will overturn this. And I think everybody in Ireland... should come behind and try and give us support, even if we have to go to the streets. I think at this stage we need to do everything we can.
78:12
How does your grandson get to school now?
78:15
He goes on a public school bus, which isn't very reliable. She has to come and get on the bus with him, which is very awkward for her, and then get a bus back and then go on a bus again to get him.
78:29
Porque é não muito lógico para mim. Eu tenho ido para os modulo homes em Mahan, e há muitos, muitos, muitos deles. E, claro, eu não quero dizer nada de nada sobre as pessoas que estão fleeing a guerra, etc.
78:45
Mas nós temos dois diferentes sociedades em Irlanda, onde todos esses modulo homes, eles têm caras dentro da porta. Literalmente, loads e loads e loads de caras.
78:55
E se eles não têm caras, eles têm free buses.
79:00
Ok, ok.
79:02
Ok, alright. Thanks Siobhan. Thanks so much. It's awfully sad.
79:05
Thanks very much again. Thanks for your support anyway. Ok, take care. Thank you. Bye bye.
79:09
The people who made this decision should hang their heads in shame. I'm horrified with this result. I can't believe it. Did any of these people think they would say if it was one of their children? . . . .
79:41
Incidentally, because you look at IPAS centres, right? And bear in mind now, a lot of the people in IPAS centres came into the country without any documentation whatsoever on who they are, where they came from. But yet when they arrive, they have to be looked after. And then they go through the process of investigation as to whether their claims are true and whether they're allowed to leave or stay or leave. But last year on the IPAS... hotel operators for 2025 978 million was spent paying hotel operators to operate IPAS centres where they took in IPAS applicants coming into the country and these are not people who came in with a visa or anything wanted to come here to work or to study or have a better life and contributed to society none of that this is just IPAS for 2025 just short of 1 billion euro I could go on and on after the break.
80:45
Texto 868104106. Listening to Craig Cody and his story, I noticed there was no mention of the drug company playing their part in negotiations by reducing the cost or offering it on compassionate grounds to that family. Has this been discussed? Thanks for that text. There's a lot in that. A drug company would never offer a drug free of charge on compassionate grounds. They need to make their money back on the research and development of the production of the drug. So, that would never happen. Were they part of the negotiations? Well, apparently, according to the body that looked at making this decision, where it was refused to pick up the tab for Sky Claris for the 200...
81:25
One of the things that they said was pharmaceutical companies sometimes offer substantial discounts, sometimes up to 60%. But this company, Biogen, has not been willing to offer that level of reduction at this point. I hope that answers your question. And then it wouldn't, I think even Craig would agree that it wouldn't be fair that you would give it to one family on compassionate grounds when there are over 200 suffering and living with Friedrichs Ataxia. I hope that makes sense. Textoid 68 104 106. Martin, good morning.
81:54
Bom dia, Neil.
82:12
And I lost the son myself at the age of 22.
82:15
Okay, and I want to hear about that and I'm very sorry to hear that. But I don't mean, you know, from the point of view of family life or losing children.
82:23
Of course, I quite understand that.
82:26
We're all human beings and we need to treat everybody and their tragedies with respect. Thanks, Martin. Thanks, thanks. Go ahead.
82:33
But Neil, I suppose I'd be angry and probably like more people that this man can't get the money from the government and this man is going to die and we can send a jet across the world for the pickup people and that costs millions. We can also give money to a war to keep it going so young families can be killed. It bothers me, and I'm sure it bothers a lot of people in this country. Is this what our country is going to be in the future?
83:04
No. I just think that Michal Martin, Simon Harris, should go and just give the money to the men and help them out. And as far as the HSE are concerned, we leave that for another day.
83:16
Então, se a HSE diz que não conseguiu isso, mas também disse que não conseguiu isso, o preço do você põe a pessoa? Mas, enfim, se eles não conseguiu isso...
83:24
Não, eu não põe a pessoa em uma pessoa em uma pessoa. Se ele precisa de tratamento, ele deve ter.
83:31
Mas isso é põe a preço em todos os livros, a qualidade de seus livros, a length de seus livros, o tempo de seus livros. Eu acho que é bad enough que...
83:41
vivendo com isso, sabendo que é um... que é um... que é um... que é um... que é um... que é um... que é um... que é um... que é um... que é um...
84:07
I was listening to a TD well ago. He gave all the excuses in the world, but he never said, yes, this man should get this treatment because he's going to die.
84:16
Ah, well, in the case of Padraig O'Sullivan, that has been his fight for the last number of years.
84:23
Well, you know, I haven't had too many TDs or ministers coming on your shorts this morning or Michal Martin saying, yes, this man is very sick and he needs the treatment and he will get it.
84:36
É as simple as that, Neil. Money doesn't say... Money has to be given to this man under any circumstances. There are other people out there with other diseases, and they should get the money. We can send the money. We can send a jet across the world to pick up people. We can send 120 millions and millions to keep a war going. I don't want to see any war going in this world. I just want them to finish. But, like, I don't believe we should be sending money, wasting money, Wasting money on this And this man crying on the television That he can't get help from the government There's something wrong with our government And there's something wrong with the people that are running it You lost your son He was only 22 He died of a heart attack in America?
85:19
Yes, yes He was in the Marine Forces in America And believe me, right? It's not easy to get over it Of course it's not
85:30
I can't imagine how you do.
85:31
No, and then when I sit down this morning and I think of this man, something wrong.
85:40
Yeah, people are very angry. People are very upset.
85:42
Something very, very wrong deal.
85:45
How long ago did your son pass away, Martin?
85:47
Well, he'd been in 50s now.
85:49
He'd be in his 50s now that he lived. And hear the anguish and the sadness in your voice. You never get over it.
85:55
Ah, Neil, look, my heart goes out to that man and his family. I don't know why they can't give it to him. They'll find plenty of money, as I said, for other people to bring him home.
86:06
Billions, millions, and give money to the world. And still, I can't help this man. Ok.
86:26
E todos nós precisamos de ajuda em sua vida, não importa se eles são presidentes, kings ou queens.
86:32
Nós precisamos de ajuda em sua vida. E eu acho que o governo deveria dar essa mania de ajuda e de dinheiro e de dinheiro e de dinheiro e de dinheiro e de dinheiro e de dinheiro e de dinheiro e de dinheiro e de dinheiro. Nel, isso me assustou às vezes, e eu diria que isso me assustou ao mesmo tempo, de pensar que ele pode ser um de nossa família amanhã.
86:50
Os irmãos e irmãos e irmãos e irmãos e irmãos e irmãos e irmãos e irmãos e irmãos e irmãos e irmãos e irmãos.
87:20
This is a lot more serious.
87:22
A lot, lot more serious. And the first man you were on after Mr. Cody will go, he hit the nail in the head. People should down tools in such time as this government actually gets to grips with what the other people need.
87:36
They're sending money out of this country handover first.
87:39
And it's not because they're trying to show themselves up for... Isn't the waste absolutely chronic?
87:44
Isn't the waste shocking?
87:46
Scandalous. It's scandalous. And here's the thing.
87:51
It's going to continue to happen unless the people change it.
87:54
Like the children's hospital, that's taxpayers' money, right? This is not the cost of the hospital. This is how much it's gone up from the original budget. 1.8 billion euro.
88:06
But you wait and see, you know, when it actually is finished. You'll see all the TDs and all the ministers up there with a shovel in their hand and getting a photograph taken with the cameras around them. It's only all propaganda. That's all it is.
88:19
We're not being run by the Irish government anymore. This is being run by Europe. End of story.
88:26
I don't know about that. You look at all of the other European countries. I often wonder about Poland. Poland seems to get an awful lot of things right.
88:36
I won't dwell much on that. We don't.
88:42
They just don't take any nonsense. It strikes me as if Poland...
88:46
You said a while ago that Michal Martin is the commander-in-chief of this country, Neil Cockman. I don't give a tupony where you're from. You can be from Timbuktu, Bangladesh, Sri Lanka, I don't care. If you're running this country, you run the country for the people of Ireland. And the people are, again, sorry, not just Irish citizens, for the people that are living within the country and helping this country grow up.
89:11
There's a man going out to work there. He's up at five o'clock this morning. He goes off out to work and he's coming home worrying about his son after burying one son already.
89:18
That's all he does is work and worry.
89:21
And then you have a wife sick as well on top of all of this.
89:24
His wife has Huntington's disease. She's in full-time care in Dublin.
89:28
It is a scandal. Above all other scandals, this is the one that's really at the tip of knowledge. I've often been on the radio with you Neil about certain things and most of it is banter.
89:40
I've never felt so angry in my life as I do this morning, listening to that poor man, what they have to go through. And what should people do? Exactly what the first man said well ago. He was the man after Mr. Cody well ago. Because this was in my head. After the protest with the fuel, what did they do? They sent in the guards. Right, that's state law. Grant, no problem with that.
90:05
But people have a right to protest. I think the best way to protest all of this . . . . . .
90:16
Yes, people are talking about a national strike, a day of strike. Yes. Yes, that's fairly extreme.
90:23
That's far out there. It is, it is, but it's coming to that.
90:29
I'm getting a lot of texts here talking about, okay, emailing every single Taoiseach, every single TD in Dáil Éireann, michael at michaelmartin.ie, but others are talking about picking up the phone. And I'm wondering if, for instance, people were making phone calls, Por exemplo, a Constituência office. Would that be harassment? An email is one thing, but bombarding someone's office with calls. What are your thoughts on that?
90:57
The simple answer behind that is they'll just take the phone off the hook and say they're inundated with phone calls.
91:03
Paper trails make an awful difference. Emails will leave a paper trail.
91:06
That's a good answer.
91:08
Write a letter. Register the letter. All of those things make a massive difference in the long run. But I honestly believe what the first man said a while ago wouldn't be long making all our politicians stand up and take notice.
91:22
OK, we'll pick it up after 11. Thank you, Malcolm. Thank you, Martin. Text 0868 104 106.
91:32
. . .
92:00
I'm trying to be optimistic about this. There is still a two-week window. I'm not necessarily the only person saying that. So is Emily Felix. We've spoken to Emily in the past in County Kilkenny. She's 28 years old, diagnosed with Friedrichsotaxi at the age of 12. She rejoins me again this morning.
92:17
Not the best of news, of course, to be chatting, but Emily, good morning.
92:22
Hi, Neil. Thanks for having me on again.
92:24
Can you hear me okay?
92:26
I can. Can you hear me?
92:28
Everybody's very, very disappointed. Are you devastated?
92:33
Yeah, no, very devastated. We had built up a lot of hope again in yesterday's meeting. And it's another setback, another one in a short space of a few months. É só um bad news story after another for us. E eu não sei como mais podemos tomar, honestamente, como a comunidade. É só torturante o que estamos tendo a passar por isso.
93:13
É unimaginável.
93:15
Sim, porque eu got a feeling que pessoas eram mais optimistas e pessimistas antes da decisão de ontem. Você sabe, pessoas eram quietos e confidantes com todo o talk e o chatter.
93:30
Sim, para mim, eu também era um dos. Eu era confidante porque, principalmente porque nós tínhamos esse rare disease, technical review committee about two weeks ago and I myself was honoured and privileged to be one of the patient representatives At that meeting where I got to see the other patient representatives speak their testimonials. And I also saw all the clinicians, including those that deal with Foodrix and Taxi on a daily basis.
94:07
But the drugs group went against...
94:11
The support of the Disease Technology Review. I don't mean to make it overly technical, but they went against the group you were talking about.
94:21
They went against the science, like the recommendation from the Rare Disease Committee was purely science. That was the science and that was the evidence that we needed. And for the drug soap yesterday to go against it, it just proves that it's solely cost. That's their only consideration. That's what's trumping every other consideration. E é branco e branco agora. O casto é o único foco.
94:52
Porque se fosse a real-life histórias...
95:02
It would have gone through yesterday.
95:04
Whether it's your real-life story or Craig's real-life story regarding his son who passed away, Rory, or his son Poddy, whose condition worsens.
95:15
Yeah, there's so many across the country. There's...
95:21
There's parents across the country who have lost children and there's siblings out there. There's another girl in Cork, Emma O'Shea. She's a strong advocate. Her brother also passed away from Friedrich's ataxia and now she's suffering with the condition. So the tragedies, the tragic stories out there, it's endless, it's countless, the amount of people being affected and it's going to keep until we get our treatment.
95:54
There's going to be more and more deaths and it is on the government's hands now. They have a chance to change the outcome for all of us but I don't know what more we can do to get them to see reality.
96:12
Right now, after yesterday's decision, and I don't wish this to sound blunt, perhaps it will, you and others like you have now been just made a statistic that's not worth the money.
96:25
Yeah, purely. It was a total flashback to my birthday on the 16th of December when we got that NCPE recommendation that said it wasn't value for money. Again, I'm put back into that box. I'm put back into the box to say that my life is not worth it.
96:51
Saving that. I don't deserve a future. There's no point in investing in me because I'm just not worth it. And maybe that's not what they want us to see or believe. But that is the message that I am feeling and the rest of the community are feeling right now.
97:16
How are you?
97:18
I'm struggling.
97:21
I'm struggling physically, emotionally, in every way, but I'm trying to stay strong for all of us.
97:37
I have to. I have no choice.
97:48
We need some good news.
97:52
You continue to lose mobility. You neurologically continue to decline by the month. Your speech, I have to say, is deteriorating. You're using a voice bank now to preserve the sound of your voice.
98:10
Yeah. That's a reality. And there's other changes. So I'm experiencing changes. Now my eyesight, which I didn't have. I'm experiencing changes. My hearing, which I didn't have. The list is endless. And I can see it. I can see it. That's the worst part. Being trapped. Being trapped in a body that is failing me.
98:43
Gradually, bit by bit, and it's totally out of my control. I can't do anything about it. But the government and the agency, the control is in their hands. It's so cruel. They know they can stop their progression in its tracks. They can do that right now. And I just can't understand why we had to keep fighting.
99:13
Because the progression will take your voice, Emily. Yeah. And is that the purpose of the voice bank? What is that?
99:21
Yeah.
99:22
What is that process?
99:23
Yeah, the voice banking, I did that shortly after we got the recommendation in December because the reality hit me that quickly. that Frederic is going to take my voice and without a treatment there's nothing going to stop the fact that my voice will be gone. So I had to sit down and record for a couple of hours my voice on a software and then I was sent different Synthetic voices to choose from.
100:02
And now I have that as an app in my phone.
100:06
So when you want to be heard, you will press the app?
100:12
Exactly, yeah. All the basic... That's daunting. The basic things, yeah, like could I have a drink of water or...
100:22
I'm hungry are just basic commands and of course it doesn't sound totally like me and I don't think anything synthetic will sound like me No I understand but it's alarming to hear you describe what's ahead and I want to say you're being very brave
100:47
Even talking about the future, because you will use an app to be heard. Your eyesight will go and your hearing will go.
100:57
Yeah, I will. But there's people in our community at a more advanced age who are legally blind, legally deaf, who have to rely on a ventilator for breathing.
101:13
this is the reality facing me and the other people without a pause and the progression of this disease this is what's coming for me and that's not a quality of life that's not a life I want to live so I can't even think porque eu não quero viver essa vida. Então, eu não quero viver essa vida.
101:45
Então, eu não quero viver essa vida. Oh, bom.
101:51
Eu estou curioso para o que você quer dizer, eu não quero viver essa vida, em sentido que você está olhando far enough, se nada muda, e você continua a diminuir a diminuir a diminuir?
102:09
que isso não é uma vida que você deseja viver em algum momento?
102:12
Bem, isso é algo que eu não sei. Eu não sei. Eu não sei. Eu não sei. Eu não sei. Mas quando eu penso de isso, eu acho que se fosse um animal, Would you put an animal through the suffering that will have to be put through? I'm taking things one step at a time, but it frightens me so much. I don't know what I'll do.
102:44
You're going through the court at the moment. You're in the high court.
102:48
Sim, é definitivamente não um caminho que eu queria fazer. Para forçar eles.
102:56
Para forçar eles. Sim.
103:00
I decided to pursue it because I felt like I was left with nothing, no other avenue. I've been up to the Dáil on numerous occasions. I've spoke to TDs. I've done every media possible that I can get onto. And I just... I feel like I'm at the end of the road now. Is anything going to happen?
103:31
Is anyone going to listen to us? And I feel that the High Corp proceedings are probably the last resort and my last bit of fight that I can contribute to.
103:47
But... Is it my understanding, is it correct that the Minister for Health, Jennifer Carol McNeil, has the gift to overrule this decision?
103:58
Yeah, she does. And she will say, she's told many people and she said all along that, oh, the decision rests with the HSE. I don't have control over it. But that's not the reality. And we've seen in the past The previous health ministers have intervened before, and she is...
104:25
She controls the HSE. The HSE is the government. The government and the HSE is one. The minister does have the power. And if she really cared, she'd use her power now. We're asking her, please, please just use your power now. Just show that this is more than a cost.
104:53
Ela tem o poder para salvar a qualidade de vida de so many pessoas e para evitar a progressão em suas trácas. E ela tem o poder. O governo tem o poder. Miel Martin, que prometeu, ele prometeu que ele ia fazer tudo que ele podia fazer. Ele prometeu que. Ele prometeu que. Era tudo sobre a news. E agora, o que ele está fazendo? Ele pode fazer uma diferença.
105:25
Ele pode intervenir. O Ministro da Health pode intervenir. O Simon Harris pode intervenir. Todos esses pessoas podem intervenir. E o que eles estão fazendo?
105:35
Emily, o que o público pode fazer neste momento?
105:39
Well, I have to say the public from the start have been absolutely amazing and that is the reason why I'm still fighting today and the support behind us. has been absolutely tremendous and it's what's given me any bit of hope that I have. But what they're doing and what they're doing on their own agenda, like they aren't doing things e-mailing TDs, phoning TDs, e-mailing TDs e-mailing TDs e-mailing TDs e-mailing TDs e-mailing TDs e-mailing TDs e-mailing TDs e-mailing TDs Because that's all we can do.
106:48
We need publicity between now and the 25th. We need the most publicity we can manage to raise. Because the 25th, the decision, the recommendation can be reversed. And I have to hold on to hope and faith. You haven't hoped what it would have.
107:13
Yeah, that's all I have to, I just have to believe that on the 25th sense will prevail and the HSE leadership team will approve the drug, approve reimbursement.
107:31
I hope I haven't tired you out, Emily. I know it's not the easiest thing in the world to do. I do appreciate you taking the call. And here's hoping, because you are right. What else can you have except hope that people will do the right thing?
107:47
We'll stay in touch. But our thoughts are with you again this morning, as always.
107:51
Thanks, Steve. Thank you.
107:53
Bye for now, Emily.
107:56
Emily Felix. Texto 868 104 106. I'm a legal practitioner and listening to the debate. I can't come on air, but I will say that it is saddening that this committee refuses the funding. I noted there is a legal challenge to the decision with the opinion that it is well-established law that under the separation of powers, the judiciary will never intervene. Well, I don't think you would. I mean, OK, listen, you're a legal practitioner. I'm not. Mas eu acho que as pessoas têm que lutar em qualquer forma que elas possam, através de qualquer forma que elas possam, que é o que Emily está fazendo.
108:30
Ela é uma jovem jovem, considerando tudo o que está acontecendo em sua vida. Ela tem uma judicial review com relação ao HSE de acordo com a decisão sobre o acesso à Sky Claris. E ela tem sido grantada a permissão de challenge... . . . .
109:02
bem bem bem bem bem bem bem bem bem bem bem bem The HSE still could, even at this late stage, decide before the end of the month, no, we're going to go ahead anyway, in spite of what the Drug Committee has to say on the matter.
109:36
And that's the hope that people have.
109:39
But it doesn't mean that people shouldn't protest or have their voices heard, or that they shouldn't be emailing all TDs, and certainly, without a doubt, emailing the Taoiseach. And I'll give you those details again with regards to email addresses that might be worth, you know, emailing and letting your voice be heard in that regard. There are two actually from Michal Martin. I think maybe it's got the michal at michalmartin.ie and then Taoiseach at Taoiseach.gov.ie.
110:08
There are phone numbers, but I think I may well get into a bit of hot water if I start giving out various phone numbers on air. But you can find them for yourself. Back after the break, text 0868-104-106.
110:18
I mean, to give people their due, it's very busy on this and I'm happy to stay with it and it's only right that we do. Avril, good morning.
110:26
Good morning. Your thoughts?
110:37
Well, my thoughts really was about emailing TDs. Now, it's a long time ago, and I don't know if it's relevant to now, but it was Ender Kenny when he was first Taoiseach, and the household charge came in, and I sent a very long letter to every TD. I got eight automated responses. Claire Daly responded, and Jerry Bottomall responded, and he said he would look into one of my queries, and he never came back, and that was the extent of it.
111:02
Você disse que ele não era revertido, mas o resto... Você tinha 8 automatic ones e o resto era ignorado, de todos os 170 TDs, o resto era ignorado?
111:11
Sim, tudo ignorado. Absolutamente nada. E aí, há um número de pontos sobre isso porque era sobre manifesto na época e o número de coisas que eles renecedam, etc, etc. Mas o mesmo ponto da época era sobre o caso.
111:23
Então, você está dizendo que era um waste de tempo?
111:26
I think it's a waste of time. I don't think they're listening. I really don't. I don't know, do petitions help more? If you have a petition up and you get thousands of signatures and you shove that in front of them, maybe then they take notice. I don't know.
111:39
Yeah, because it would be easy for them to say, well, we need to stay. We can't get involved in this. This is a decision that is made by clinicians. It's a decision made by different committees.
111:51
You know, we don't have actually any control over these funding decisions.
111:55
They're made by an HSE drugs group. When it suits their agenda, then they can make decisions. I'm sorry, I just, I'm old. I'm... Sceptical and had enough of them all. Not just here. I think governments generally just are not interested in the people. Once they're in power, that's it.
112:15
Off you go.
112:17
Yeah, yeah. So, therefore, what are the options for people who are clearly very angry and very upset?
112:23
They're angry and upset, and I don't know what they do. I mean, maybe you can go and stand outside the door. I don't know. Does that make any difference? And my standing days are gone, I'm afraid. Yeah. O que acontece com o change.org? O que é isso?
112:50
They put up petitions for people. Obviously, the accent says I'm not a native, so I sign British petitions too. The thing is, you have to have so many, I can't remember how many thousand signatures you have to have, and it has to be discussed at government level. And openly discussed, and they will give you the response. And again, it does sometimes seem to bring attention to some Mas, mas, eu quero dizer, eu quero dizer, eu quero dizer, eu quero dizer, eu quero dizer, eu quero dizer, eu quero dizer, eu quero dizer, eu quero dizer, eu quero dizer, eu quero dizer, eu quero dizer, eu quero dizer, eu quero dizer, eu quero dizer, eu quero dizer, eu quero dizer, eu quero dizer, eu quero dizer, eu quero dizer, eu quero dizer, eu quero dizer, eu quero dizer, eu quero dizer, eu quero dizer, eu quero dizer, eu quero dizer, eu quero dizer, eu quero dizer, eu quero dizer, eu quero dizer, eu quero dizer, eu quero dizer, eu quero dizer, eu quero dizer, eu quero dizer,
113:48
But they're the words. I'm not making them up.
113:51
I know you're not making them up.
113:53
And I don't... The actual wordings were poor, poor value for money.
113:59
Yeah. But I would have thought anyone in a position of power, anyone in politics would have more sense about the words they use. Even if that's what they were saying. Couldn't they put it...
114:09
Or maybe being blunt is it. You're not worth it.
114:12
But is it a case, though, that every single TD, all the way up to the Taoiseach, and indeed every single senator and every single person who's involved in politics and elected into politics has no say in anything, that it is actually a senior civil servant, and in this case, a group of clinicians who are making decisions regarding the Irish people? So that's madness.
114:33
Why do we have a Dáil? So why do we have a Senate and why are we paying them?
114:38
. . . . . . . . . .
115:08
Every campaign has to have a rallying point. And for me, Eon Martin in particular, there's a reason he won't talk to you, Neil, right? We all know what it is, but he made a famous statement when he was on your programme and he said, where's your humanity?
115:23
Ok.
115:38
Well, listen, you're entitled to say that. I'm not going to personalize it in any way, shape or form. I'm a broadcaster trying to do my job as best I can, trying to ask the questions that people want asked on their behalf. Sometimes they're difficult ones. You know, the last interview with him was robust. It was the last interview...
115:59
He did, and that had to do with border controls involving IPAS and people coming into the state without paperwork. And I think maybe he might have confused it with the whole issue with regards to Ukrainians. I mean, there was other things brought up about Ukrainian dogs and pets and things like that. And I think he just had had enough of it. Maybe he thinks, maybe he... Maybe he thinks he just doesn't...
116:23
For the salaries he has and the money he's spending, he doesn't get it.
116:28
Anyway, no, anyway, look, that was the end for him. He just hasn't spoken to me since then. And that's just the way it is. Now, I don't know what kind of a personal relationship I would have with the man going forward, but on a professional one, that's it. He ain't going to talk to me. But there are other, I mean, there are other senior politicians, actually, who don't talk to me.
116:46
And a lot of it has to do with, well, it's all about the interviews on the air. It's not in any way personal. I don't think that they particularly dislike me in any way. But they're just not happy with the questionings. And that's really what this is about. But it's an interesting point. You can have reverse psychology. Where is his humanity now? I understand the point you're making. It's a very good one.
117:08
Okay, thanks for that surrender and saying again, my heart goes out to that man in Bodervant. I can only imagine. I can only imagine. I actually can't imagine. And that's the truth of it. And that's what's... It's so personal now. They made it personal and it's absolutely... I'm choking up here thinking about it there. It's actually disgraceful. It's just... Disgraceful.
117:26
How do you feel when you hear my conversation, say, for instance, with Emily Felix? She's 28 years old. Her ambition in life is to be a solicitor. She's a trainee solicitor. She is absolutely heartbroken. She's losing her mobility. Her eyesight is going. Her hearing is going. She saved her voice in a voice bank because her voice will go next. She suffers with chronic fatigue and breathing issues. At some stage will be confined to a wheelchair. These are the personal stories of neurological and physical degeneration.
118:03
But they don't seem to be taken into consideration with regards to humanity. Your word, humanity.
118:08
Well, my point of view on that lady there, I'm in my 60s. I've lived a very varied life and all I can say is that I would only be 1% as opposed to that woman. She is a hero and there's no other word to say other than that. I bow down to her and I Take care, buddy. All the best.
118:39
Take care. HSE is going to overspend 1.5 billion this year. 1.5 billion overspend. It's a criminal waste of taxpayers' money. Imagine the health service we should have, given the money we put into things, until such time as the HSE mandarins are held accountable for spending the waste they have. Nothing will change. Absolutely. Thank you for that, Paul. Absolutely disgraceful the people of Ireland can't get these life-saving drug interventions. Imagine it's more about the cost than keeping people alive. No issue for paying thousands of military-age men living for free in our country, though, while IPAS owners have received billions over the last few years.
119:15
I'm so angry and heartbroken listening to your stories this morning. Shame on Michal Martin. He gave £175 million to Ukraine on his visit a few weeks ago. It's like as if you have to bring a gift, isn't it? It seems our government has money to help everyone but the Irish. Set up a poll and ask, do you find your disease-modifying drugs effective? Yes or no? Do you know the cost per annum? Yes, I've dealt with all of the costs. I've broken all of the costs down this morning. Please don't ask me to go through all that again. 280,000 per patient, which would equate to 116 million for five years.
119:48
That's the number. There are the numbers, no matter what you look at it. And if you want to talk to me about numbers... . . .
120:08
In 2025 alone, the overrun of the children's hospital, 1.8 billion. The security hut, 1.5 million. The Arts Council's IT system that was scrapped, 6 million. The Irish Rail IT system that was scrapped, 50 million. The electric buses that sit there rusting for the last two years, 80 million. The Covid ventilators that never worked, remember them, 22 million. Do you want me to go on and on and on? Because I could all day long. Back after the break.
120:36
Get on to Prenderville.
120:38
Text or WhatsApp Neil now. 0868-104-106.
120:42
The Neil Prenderville Show on Red FM.
120:47
. . .
121:15
E não é isso? Não é isso? Não é isso?
121:36
Come on, Neil.
121:59
I'm shocked, to be quite honest. I'm shocked to think that a drugs group that was set up by the department to advise them has come back and based this, has to have based this on figures and money, not based on medical, professional advice.
122:16
Neil, this is walking throughout Europe. This is not a cure, as we know, but it will give great help and great remission to people that are suffering and ease the pain that they're suffering. And to think that a government and other European and far poorer countries in Ireland have accepted the advice from their department, their health experts, but Ireland has decided not so far and now has pushed down to the scene of management. So what
122:43
So what are you supposed to do if you don't listen to senior management of the HSE or listen to clinicians or listen to committees that you set up or listen to those in the civil service? What's the point in having all of those if you don't abide by their decisions?
122:58
I genuinely think that this was a can-kicking exercise, to be quite honest with you. I don't mind what they say, because why, and this is the question I asked when I heard this in the Dáil, and I heard this previously, what are we putting together? All these expert groups, or when the expert groups have given and made their decisions all over Europe, and told the rest of one or two in relation to Sky Clearies. So what are we trying, reinventing a wheel? Is it good?
123:22
. . .
123:41
try and iron this out and ask the questions and ask the difficult questions from the drugs group and before meets the senior management of the HSE who may just take the drugs group's decision and walk away with it we need to reconvene the health committee I've written to Padre Christ, I've written to the chair of the head committee, I've written to... Here we are again, talking about committees and all sorts of stuff like that.
124:06
What people want is action. They just don't want more committees sitting down talking about things. They want it, I don't know, even if it was thrashed out in the Dáil. Does the Minister for Health have the right to overrule this decision? Does the Taoiseach of the country, the commander-in-chief, have the right and the power to say... I don't like your decision. Reverse it. That's an order.
124:29
I most certainly think that the Minister has in there saying she's a great woman rolling up her sleeves and I won't deny that. If she can do this and turn it around, the only mechanism we have before the 25th of August is to sit down on the table and show them. They have to see the error of their way here. This is a terrible, shocking, horrific decision for Craig Cody, for his family and for Emoshé and for many more families in church country. And this decision, Neil, has to be reversed. It's a shocking decision. We didn't need to bring a conversation. Do you see people's anger with regard to waste at the same time?
125:09
If this is a decision that's deemed to be poor value for money, what value for money do people get in this country when they see the waste? I mean, billions in waste have given lists out this morning of waste. Do you understand their frustration and anger?
125:26
I do, especialmente em milhares.
125:30
O problema é que o health budget é shattered. E, unfortunately, this has become a victim of this, porque há não dinheiro. Então, por isso, por isso, por isso, por isso, por isso, por isso, por isso, por isso, por isso, por isso, por isso, por isso, por isso, por isso, por isso, por isso, por isso, por isso, por isso, por isso, por isso, por isso, por isso, por isso, por isso, por isso, por isso, por isso, por isso, por isso, por isso, por isso, por isso, por isso, por isso, por isso, por isso, por isso, por isso, por isso, por isso.
125:58
. . .
126:13
You know, and it's not good enough to say that we haven't got £125 million over five years. It sounds like a lot of money. And I know people will go mad and they'll say this, but if you can go... A lot of money.
126:23
I don't know what a lot of money is. Nearly £2 billion of an overspend that was spent on the children's hospital that isn't fully open yet. £2 billion over.
126:32
E que é o problema com a health budget. E eu sei que na outra área, a t-shirt da semana, a flick de um dedo, eu sei, eu sei, eu sei, eu sei, eu sei, eu sei, eu sei, eu sei, eu sei, eu sei, eu sei, eu sei, eu sei, eu sei, eu sei, eu sei, eu sei, eu sei, eu sei, eu sei, eu sei, eu sei, eu sei, eu sei, eu sei, eu sei.
126:56
time and lives because I know I'm trying to find a mechanism between here and the 25th of August to unravel the mistake that was made yesterday in my view but that shouldn't be the case the minister needs to intervene here she needs to show that she's strong and if she is let's see we'll count on that over the next number of days please God lhe conveni the first of the next week and let's turn around the cable and trash us out and try and sort it out for these people.
127:19
Thanks Michael, appreciate it. Michael Collins, Leader of Independent Ireland. I'm trying to get a line to Sinn Féin and hopefully Tommy Gould before we quit but this is all about your programme, Reams and Reams Attacks, which I will come back to throughout the course of the morning. Voice Notes as well, this could well be one of the shortest ones I've ever had. Let's have a listen to this one, check it out.
127:37
I have two small kids there myself, and I tell you one thing, if I was in that man's position, I don't know how I'd keep it together. Absolutely raging on his behalf.
127:45
Back after the break.
127:51
An interesting text here. Wait till you see waste. Wait till you see the amount of money they spend when Trump comes in September and the amount that will be spent on keeping him safe. Where will they find that money from? Good point. Just very quickly, Marie, good morning.
128:05
Good morning, Neil.
128:06
Your thoughts?
128:08
Oh, I am so upset now. I'm hoping that I'll be able to keep it together for the few minutes I want to speak to. We've all spoke about how terrible it is and it is shocking. I just can't understand how a group of people can decide whether somebody lives or dies. To me, that's like standing in front of someone with a shotgun and saying, hmm, am I going to shoot you now or am I going to let you die slowly?
128:35
Let you die slowly seems to be the option they've given.
128:39
That's it. In front of your loved ones, let you die slowly. How can any human being make a decision like that about another human being and say that it's all about money? It's an absolute disgrace. Now, I'm on to speak to you. What can we do, Neil? We need to protest. Obviously, contacting all these TDs is a pure waste of time. A pure waste of time. I'm an SNA, I work in a special school, I've seen lots of children and the needs they have and the suffering and what the parents have to go through to beg, borrow or steal for basic things for their children.
129:21
This country is an absolute disgrace. So we need to get out on the streets.
129:27
Do we need to go in front of the HSE offices? What do we need to do? We need to do something like the protest that the people did for the price of fuel.
129:36
I love where you say you're three kilometres from Buttevant where Craig Cody is. You're on Ballyhay. Is there anything I can do to help him? That's personal. That's lovely.
129:47
Well, I mean, I'm an SNA and I see what people have to suffer. And if I can go in and if I can do household chores for him, if I can do something with his young son to help him out, if I can allow him go to work some morning easier or do anything for him, please give him my number. I don't want to annoy him, but I am hands-on if he wants me. I am so lucky that I have three healthy children. Thanks be to God. And they're adults now, so they don't need me. And I looked and cared for my mother for a long time.
130:18
And now she's passed. So I'm here if he wants me. I'm not going to be knocking on his door, but you're free to give him my number if I can do anything.
130:26
I bet you there's many others like you. Thank you, Marie. And of course, you talk about your own healthy children, sadly, Craig Cody. And it's just this is just Craig's story. There are other stories. We've heard Emily Felix's story again this morning.
130:38
He had two sons. One died last year at the age of 13, young Rory, in September of last year. And his older son, Poddy, I suppose he gets worse and weaker as the days and weeks go by. He's 16 years old now and continues to deteriorate. Tommy Gould with Sinn Féin. Tommy, good morning. She said there, actually, Marie, that it's a waste of time talking to DDs. It will make no difference. What do you think of that?
131:06
Yeah, I understand the frustration and the anger, Neil. I actually, like, I've spoken to yourself, I've spoken to your show. We, a lot of us, worked behind the scenes with the Taoiseach, with the Minister for Health, trying to get this over the line.
131:19
We tried to keep the politics over because you're talking about... Okay, so what did they both... So if you worked behind the scenes with Micheál Martin and with the Health Minister, what was your understanding as to what they were planning to do?
131:33
Neil, I was very optimistic, and I spoke to yourself about this, and I didn't want to say it. The vibe in Dublin was that this was going to be passed, right? And the announcement yesterday. It's just, I'm so angry. My heart goes out for Craig, and for the Sun Party, and for all those other people. But Neil, let's call a spade a spade here now. The facts here. This country is awash with money. O O P W has rented buildings in Cork for 20 million for the last couple of years, while they have 14 empty buildings.
132:05
You have 42 million owed in Derrick Seitz levies, right? There's money all over this country. And then Irish citizens, people who are dying, they're dying. E esse governo... O que é o respeito? O que é o apoio? O que é o humano? O que é o governo? O que é o governo? O que é o governo? O que é o governo? O que é o governo? O que é o governo? O governo? O governo? O governo? O governo? O governo? O governo?
132:46
They can get this drug in France. They can get this drug in Germany, Spain, Italy. Why can't we get it in Ireland? They've had it there for years.
132:53
Has he said anything this morning at all with regards to this news, do you know?
132:59
I didn't see it yet. Nor did I. I'm not seeing anybody reporting on it anyway.
133:03
Neil, you've had people on today now, right? Like...
133:08
This government is responsible for the people of Ireland. These people are dying. I spoke to Craig numerous times. He told me how parties are going to affect his walking. What I will do, they will die in front of their families without support. Where is the government? It's unbelievable, Neil. I'm so angry. How dare they? How dare they let people die in this fashion when they're spending money left, right and centre?
133:38
It's unbelievable. And can I say this now?
133:44
E aí E aí E aí I'm going to talk about Sunday. He should be here today or in Dublin and make an announcement that this money will be granted so that these people will have some dignity, will have some...
134:23
. . . . .
134:48
Ele é um filho, Neil. Can you imagine a child saying that to his dad? After burying his brother, his mother is in hospital, and here he's talking about dying. I tell you, I know how Craig can get up every day. I know why he gets up. He gets up for his son, he gets up for his wife. How that man, and all the other families like him, how they're going through this, and their government... O governo que é suposto a olhar para eles. O governo que é suposto a ajudar eles e minar os filhos.
135:22
Nós falamos sobre a história e a proclamação de todos os filhos de filhos de filhos igualmente. A parte não está sendo fechada por esse governo. E as pessoas falam sobre protestas e marchas.
135:35
There's an opportunity. The Taoiseach can fix it.
135:38
There's still an opportunity. There's still time. The Taoiseach can fix this. Okay. All right. Thanks, Tommy. Appreciate it. Tommy Gould, very annoyed, very upset. We'll pick it up in the morning. For those of you that didn't get on air, text 0868104106. Voice note, if you wish. If you can't get on air, if you'd like to have your voice heard, it's the same text line. Text 0868104106 number, but it's on WhatsApp.
136:01
. . . . .
136:22
But remember I mentioned the marina market, the big table mixer at the marina market. It's Friday at half past five. There's loads and loads of events for Cork and a Fork and it starts today. But you'll be down in the marina, there'll be a hundred of you. It's a big feast, big long table. You'll be eating all of the food from all of the traders in the marina market and you get to socialize. CVG will be on the decks and be supported by Heineken Zero Zero. And it will be just a great event and the best of food. I'm opening the phone lines now. We've got double tickets for it. 0818 104 106. Please don't get in touch with me unless you can go and be there because these tickets are hard to get.
136:57
It's half past five on Friday. Can you make it? Yeah? Okay, dial now. Pick up the phone 0818 104 106. Have a good day. I'll see you tomorrow.
137:06
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