Good morning,

PJ.

We sincerely hope that the problem is to get clarity on that from the minister is becoming a bit of a difficulty.

So that's the position we're in.

I think I have to congratulate Megs on the campaign that she's running.

I met with Megs and Dr. Talley and Clark myself about a month ago or more.

And they outlined the urgent need, the urgent need we have for the STEM sales lab.

And yeah, I think if you're critical of him at all, but I love the fact that, you know, he said he just dropped it in like it was part of the conversation that...

Good morning,

PJ.

We sincerely hope that.

The problem is to get clarity on that from the minister is becoming a bit of a difficulty.

So that's the position we're in.

I think I have to congratulate Mags on the campaign.

that she is running, I met with Megs and Dr. Talley and Cork myself about a month ago or more and they outlined the urgent need, the urgent need we have for this stem cells lab to be in the South West.

And more

besides.

And more besides, I'd build, if it could be done, build triple the amount of houses that are planned.

But what you do is you put in an infrastructure that can handle that and not pile all the traffic.

I mean, there's a brand new interchange being built.

There's a brand new motorway being built at the far side.

And it would make perfect sense to build roads to go to that infrastructure, which will be able to handle the extra traffic.

Where are they all going? going to go?

And, you know, it is a relatively common practice then, is it?

It is, and it was certainly a very strong and common practice that people came to the rural pub, especially in areas where there's so many, where there's no bookies agents or bookie shops, and people into a pub and they obviously bought a drink and said, put a fiver on a horse there or put a fiver on a match or put a dinner on the match.

And now that's been completely blocked.

Now, there was regulation before this blocking, but there's severe fines attached to it now.

And we're not one bit afraid of regulation.

That's very, very important.

But to me, this is a sledgehammer cracking a very small nut in relation to the small, tiny bits that the rural pub was helping their customer take out, which is very unfortunate.

So when you say there's been a crackdown on it or a toughening of sanction, what's actually happened and when?

it shouldn't take families to have to go to that extent thank you Michael Collins TD down in West Cork whatever needs to change in legislation this must never be allowed to get to this point again would you agree with me good morning Good morning,

PJ.

Absolutely.

Absolutely.

And it leaves a lot of unanswered questions that need answering through the door.

As a whole, we were left with a process that really doesn't work.

And I mean, I saw a statement yesterday from the minister and she said we had to give the scientists the time they needed to get this right.

Would you agree with me? Good morning.

Good morning, uh, PJ.

Absolutely.

Absolutely, and it leaves a lot of unanswered questions, uh, that need answering, uh, through the door, uh, as to how we were left in the pro, uh, with a process that, that really doesn't work.

And, I mean, I saw a statement yesterday from the minister, and she said, "We had to give the scientists the time, uh, they needed, uh, to get this right." But the, the bottom line here, PJ, was in February 2023, the US approved the drug.

Mm-hmm.

In Feb, in, in December, uh, 2023, the European, uh, authorities started looking at the drug, and in February 2024, they approved the drug.

We started looking at approving the drug in, in August 2024, and it took until August 2026 before we could approve the drug.

But surely when the HSE drugs group said no, the deciding counsellor, the senior management of the HSE could have made a quicker decision.

It certainly could because it looks to me as if, you know, it's the people's power that has pushed the HSE and pushed the government into forcing it, you know, just to move the way it is.

But it's moved a snail's pace all along and only for the people coming out in the streets last week in Cailkill, in Maddow, in Babin Lock.

in the Garden of Remembrance in Dublin, and the meetings we had in Dublin on the issue.

We're forcing the issue, but it shouldn't be this way.

It should be done in a far more clear way prior to this, on the run-up to this.

They know this trouble's there for two years.

Why is cost-effectiveness a calculation that's even considered when weighting a drug? You know, its measured clinical benefit should be weighted against its price.

Have you heard anything? Good morning.

Good morning, Vijay.

No, absolutely not, unfortunately.

And by God, we've embarrassed the people who are suffering from federalism.

Actually, they've come over all the stops and the local radio stations and the celebrities out there in fairness have done everything they can.

to get this message across, to get this word out today that they're now in a position to fund the drug.

There is much needed.

ourselves that Ciarán Maluri spent nearly 30 years as a journalist, so knows how to ask those questions, yeah.

What is your primary message to them today before they make that call?

Well, I suppose our message has, we've been crying out, we'd say, for the last number of months i- in relation to the drug Skyclarus and the, and the urgent need, uh, for, uh, for people with Friedreich's ataxia to, to, uh, access the drug.

And I think, you know, uh, over the, I suppose we've, we've upped the ante a bit, especially since the HSE, since the Drugs Review Group refused, uh, just go, uh, to go forward, we'll say, for, for payment and for clearance that the patients could get it.

So we, the, the urgency and the, I suppose the importance of this, it has been highlighted last week in Celtic.

There was a huge turnout.

There was a huge turnout in Bellinlock, in Mallow, and, and yesterday in the Garden of Remembrance.

And I think the message we're trying to see, uh, send to the government is that, and to the HSE, I suppose, uh, in particular, is that this, tomorrow's decision is, is vital.

I mean, how do you respond both to the financial side but also the clinical arguments that they put forward?

Who have you invited?

Yes.

So look, the, I, I know there's a chain of events going on, uh, PJ, like you've mentioned there just in the review earlier.

There's a peaceful, um, show of support tonight in Kill at 7:00, uh, to support him and others, uh, him, Oisín, and others with, uh, the, the, the dreadful, um, uh, health condition of Craig Reid's ataxia.

The same, uh, there's a vigil in Ballinlock, uh, Park on Friday night, and in Mallow, I think, uh, tonight also.

And, and also then there's a peaceful show of support on Sunday, the 23rd of August, in Dublin, in the Garden of Remembrance.

So there's a huge amount of activities going on, but in relation to what I felt that the only thing I could do, and they'll say, again, they'll also say, "Oh, that's nonsense." Well, what am I supposed to do? What are we supposed to do? Sit idly by and accept this, and pat them on the back and say, "It's a great idea.

Could the, could a statutory instrument do this, Michael, or will it revolve the dial? Good morning again.

Good morning, Michael.

Good morning, PJ.

Yes, indeed it was.

And look, people will say it's not a stunt.

You can look at it whatever way you want to look at it.

I could easily have asked for the reconvening of the dog, knowing that is never going to happen.

No matter what we try, no matter what crisis hits this country, that never happens.

Who have you invited?

But Michael, you say that we can't wait until then in silence and you're calling for the Dáil Health Committee to be reconvened immediately.

Absolutely, Patricia.

This is devastating.

It's a horrendous news, heartbreaking news last night.

And, you know, I spent the night, God knows, I couldn't sleep after hearing the news.

Never mind.

Think what Emoji and Craig Cody and all those who have been fighting gallantly and have lost family members due to Frederick's ataxia.

Why do you think Ireland's reimbursement process consistently trails behind our EU neighbours when it comes to groundbreaking treatment for rare diseases? Because this isn't the first case like this that we've dealt with.

That is a lot of money.

It's €130 million over five years for 200 patients to help.

their lives it won't save their lives we accept that but it will help them for many many years and it has been proven so the rest of europe i spoke to consultants and specialists in europe because i'm trying to get see would our patients be taken abroad and would be treated humanely seeing as ireland won't do that and they have told me it's working in portugal they've told me it's working in spain it's working in other countries but unfortunately for some reason we have a massive hold up here and in my view it has to be down to budget And there's a can-kicking exercise going on here, PJ.

I have raised this on numerous occasions.

I have seen the people you've seen, you've spoken to, Garrett and Amos and all these out there.

They are seriously suffering.

They know there's something out there that can help.

Michael, I know the committee's come back before the House, when do they usually come back?

That is a lot of money.

It's €130 million over five years for 200 patients to help.

their lives.

It won't save their lives, we accept that, but it will help them for many, many years, and it has been proven.

So the rest of Europe, I spoke to consultants and specialists in Europe, because I'm trying to get, see would our patients be taken abroad and would be treated humanely, seeing as Ireland won't do that.

And they've told me it's working in Portugal, they've told me it's working in Spain, it's working in other countries.

But unfortunately, for some reason, we have a massive hold-up here, and in my view, it has to be down to budget.

Michael, I know the committee has come back before the House, when do they usually come back?

So are we in danger of conflating two separate issues here?

Well, well, you know, we're saying there is double standards.

I'm saying if somebody comes into this country and is, and is ill, they should get a medical card the same, they should make the same application, the same as everybody in this country do.

And if they're entitled to get it, they should get it.

There's no issue there.

What is wrong, in our view, to hand a medical card to somebody that is perfectly healthy, out there, have no illness whatsoever, but here's a medical card basically free of charge.

That's very unfair on, on, on, on people who are very ill in this country and who paid into the system, who, you know, worked hard all their lives and d-didn't fall ill, and have looked for a little bit of help and are unable to get it.

It's a huge issue for people who are bringing cancer patients to a hospital and the like too.

Will you remind listeners briefly what were the issues? Good morning.

Good morning, uh, Paul.

Yes, indeed.

Look, I suppose, just backward, we're lucky to have apprentices, of course, in this country.

Can't move without, uh, uh, apprentices, and, you know, for trades, a vital part.

They are a vital part of the Irish workforce, so a bit of respect go- is an old saying, goes a long way.

And in this situation, uh, the students, especially, uh, with the electrical apprenti- apprentices, they were studying, uh, papers for months.

Mm-hmm.

Will you remind listeners briefly what were the issues? Good morning.

Good morning, Paul.

Yes, indeed, look, I suppose, to start with, we're lucky to have apprentices, of course, in this country.

You can't move without apprentices and, you know, for trades, a vital part of the Irish workforce.

So a bit of respect is an old saying, goes a long way.

And in this situation, the students, especially with the electrical apprentices, they were studying papers for months.

Some of them, and many of them, paid tutors to make sure they made no errors, got their exams across the line.

But is there any kind of broad consensus of what happened?

I spoke with committee member Michael Collins about the milestone event and why agricultural shows continue to play such an important role in rural communities.

It's a huge milestone for the Committee of the Scotland Agricultural Show that this Sunday is going to be the 60th anniversary, the first show being in 1966.

So our intention is to have a whole range of events.

We usually have a fun, family fun, packed day in store for people.

This year there's a little bit more, if that's humanly possible.

We're looking at having cooking demonstrations.

flower arranging.

So what's the response been like from people getting involved, especially with entries going out through the local schools?

Well, when 70% of the students around the country fail one exam paper, it points to the exam paper rather than the students, I would say.

It certainly, it certainly does.

And there's, it looks to me as, you know, on the statement that came out yesterday even from Solas and the minister, I met the minister yesterday, met her on numerous occasions, and she's been so act, very, very fair, fair to, uh, towards the apprentices to make sure that they're, they, they have a, a clear understanding that they're not wrong here and there's a wrong, if there is a wrong here, let's put it right.

So basically, what they're saying now is the c- uh, they're commissioning, uh, Solas, an independent review of phase four and phase six theory assessment papers a- and related markings.

And, and that has to be concluded by July 'cause this is all very urgent as far as the students are concerned.

They have done their part, um, and, and, and, and, and trained and, and done their studies in relation to what they thought would be put before them or what should have been-

They've also set up a hotline for any apprentices who feel hard done by.

Yes, absolutely.

Exactly.

certainly does and as it looks to me as you know in the statement that came out yesterday even from solace and the minister i met the minister yesterday met her on numerous occasions and she's been so act very very fair to towards the apprentice and make sure that they're they they have a clear understanding that they're not wrong here and there's a wrong if there is a wrong here let's put it right so basically what they're saying now is that they're commissioning solacer an independent review of phase four and phase six theory assessment papers and related markings and that has to be concluded by July because this is all very urgent as far as the students are concerned they've done their part and trained and done their studies in relation to what they thought would be put before them or what should have been and it hasn't so now they're accepting that there's going to be an independent review but also on top of that just I suppose if the independent review comes back in favour of the students I presume maybe historical markings will be looked at I cannot answer what's going to happen No.

The

So clearly the The bit of push helped.

It certainly did.

And as I said, I didn't deal with Minister Lawson.

I certainly did deal with Minister Harkin.

She was on it from the word go.

I mean, why do you see a commitment up to 2030 as actually a negative thing, rather than some might say, "Well, that's a solid multi-year plan"?

At this stage, uh, Patricia, and I've spoken to the, uh, postmasters and postmistresses that, that ha- have stepped away in recent times, and it, it looks to me at this present time, unless there's a dramatic change, that where there's a post office closing, people look at the figures, people look at the books, people see whether it's a profit.

Well, now if you own a building and you've been there for years, you might just survive away and continue away.

But if you wanna buy into something, if you wanna rent a building, if you want to run a proper b- uh, post office system that can be ran, um, that should be ran, uh, but isn't being ran at this present time, it's not a viable option.

And I've seen it in Goleen, I've seen it in Durrus, we've seen it in Crosshaven, we've seen it in many more places throughout the country.

And, and, a- y- you know, I, I just think that, y- you know, okay, they're going to give money now up until 2030, but they're not adding to the services that are there.

And I, as I said to you, the, the, there's incredible service in the French model, and why can't we look at the French or the Italian or the UK model, the Finland or the New Zealand model, where they're talking about even t- t- telemedicine, uh, is a pilot in, in, in, in Italy.

Uh, you know, and when you see the post offices in places like Goleen and, and Durrus, uh, closures like that, they, they tear a piece of the community out, don't they, when they close?

Good morning.

Good morning, PJ.

It is.

It's a huge story for so many young people in this country that, you know, young progressive people that, you know, have focused on their studies, have worked with their families to make sure they get across the line, make sure that Ireland gets what they need, electrical contractors, have to be tripped up at the last stages of this by some kind of a mess up, is the best way to describe it.

And some will say that, you know, oh, These changes are not wrong, but they're terrible, terrible unfair for what has happened here.

And the lecturers are saying, well, Salas are blaming the lecturers.

The lecturers are saying they've admitted that they did not cover the material in class.

Yes, and,

Good morning.

Good morning, PJ.

It is.

It's a huge story for so many young people in this country that, you know, young progressive people that, you know, have done, have focused on their studies, have worked with their families to make sure they get across the line, make sure that Ireland gets what they need, electrical contractors, and to be tripped up at the last stages of this by some kind of a mess up is the best way to describe it.

And some will say that, you know, oh, you you know, these changes are not wrong, but they're terrible, terrible unfair for what has happened here.

And, you know, the lecturers are saying, well, Salas are blaming the lecturers.

The lecturers are saying they've admitted that they did not cover the material in class.

Yes, and, you know,

Well,

during probably a council election, there's also, again, as a sideline, maybe the following day, there'd be an election for the mayoral council, such as only the Clarnacilty.

I don't vote in it, because I'm not in the Clarnacilty area.

So the Clarnacilty area has a right to vote.

And I think nine candidates ran the last election.

I think five got elected.

and the previous Mayor was Colin O'Donovan, he did a fantastic job, again on a voluntary position.

wouldn't you take a picture?

M- Michael Collins, what's your take?

Uh, first and foremost, we, we signed up to unachievable targets.

That's the way, uh, we see it, uh, in Independent Ireland.

Um, uh, I think the government, i- you know, the... our European partners have been calling us laggards for a long time, uh, in relation to renewables.

You look at the grants that are out there at this present time.

For, for the ordinary couple, and this is what we think is the ordinary m- uh, hardworking men and women that goes, that work, i- i- goes to work every morning at 6:00 or 7:00.

If they want to put solar panels in their house, if they want to run their motor car, um, want to run the house with solar panels, they'll get a grant of 1,800, but they'll have to spend 20,000.

Michael Collins.