Pádraig O'Sullivan

Yeah, and I wish there was a quick solution and an easy fix to it.

But we operate, unfortunately, a system in this country that leads to prolonged delays.

And I'm not trying to apportion blame on either the HSE, the NCP or the drug manufacturers in that.

There's probably equal blame all around.

But typically, just to give your listeners an idea, under the Health Act currently, all these drugs are meant to be scrutinised in 180 days or fewer.

But typically, in the case of rare disease drugs, we see that Ireland, I think the most current statistic was it takes 814 days on average to assess a rare disease drug.

No.

That's not acceptable.

No.

So what I've been calling, and I actually published a bill back in 2021,

So I suppose the easiest way to explain this to people is if you come up, if you're a drug manufacturer and you come up with a new cough syrup or a new, you know, a drug that's, I suppose, available to maybe a million, two million people in a market like Ireland, that drug is assessed the exact same way as the drug that we're talking about here today, Skyclarus, which might only affect a couple of hundred people.

So when it comes to economies of scale, when it comes to investment and all that, obviously that cough syrup, whatever, might cost 5, 10, 15 euros.

But the drugs we're talking about here cost obviously tens, if not hundreds of thousands of euros.

We don't.

But look, again, it's all commercially sensitive, but it ranges in between 100,000 to 300,000 per patient, depending on their condition.

Per year, is it?

Per year.

Potentially.

There's 200 Friedreich's ataxia sufferers in this country.

But under this assessment that's been done by the NCP, only about 50 or 60 of them will be eligible for this drug, even if it is approved, because it's only been looked at for patients aged 16 and over.