Maria Delaney

Yeah, and I suppose when you think about if you have a progressive disease, anything that will stop that disease or slow it down, even if you currently will still have the symptoms, makes a huge life difference for people, especially if you get it before they actually have the symptoms.

So you're thinking about long-term people starting it when they're 16, that kind of thing.

You also have to look at, I know people are asking for the government to fund this,

But there is a need to push for change to negotiate prices on an EU block.

We co-published an investigation by Investigate Europe in 2024 and it looked at the CF drug negotiations and that's Vertex.

And it found that kind of the secret deals negotiating with each country really favours companies with treatment monopolies like this drug for Fetrexataxia.

And also it favors richer, larger nations.

So countries like Ireland miss out.

Now, they weren't because of the secrecy, weren't able to find out how much per patient the CF drugs were costing.

But they found that in France it was 71,000, Italy 81,000.

And then if you look at the poor countries like Poland, well, this was back in 2022, 109,000, Czechia 140,000.

That's extraordinary, isn't it?

Yeah, exactly.

And it's this unfair balance of poorer, smaller countries.

I know Poland isn't small, but it would be considered one of the poorer countries losing out and the richer countries getting a cheaper drug.

Yeah, and it's often rare diseases that end up falling behind because these rare disease drugs obviously can only benefit a smaller number of people.

They cost more.

And I suppose one thing that's not talked about too much is the huge impact on people when they have to campaign like this.

I actually was before a journalist.

I was a patient campaigner and I was part of a group that we were campaigning for better treatment for.