Craig Coady
👤 SpeakerAppearances Over Time
Podcast Appearances
Even though the house is fully equipped for wheelchair-friendly now.
It's like cystic fibrosis.
Years ago, they declined on this.
But since they're on the drug now.
And they said it's too costly.
It's not cost effective.
You know, I don't know.
Yeah, it doesn't look clear.
It doesn't hold back.
It's aggressive.
And it has come back because we have a WhatsApp group of patients that are on this drug and they find a change in themselves that they're doing today that they actually couldn't do before, funny enough.
And what was kind of stuck to my head last Wednesday evening in Leicester House was the so much red tape here to get rare disease drugs.
Like it takes a couple of months in Europe while it could take two, three years here to get a drug on the HSE list.
Sure, that doesn't make sense.
This is why I really don't like the EU have passed this drug.
So, and we are in the EU.
So I really don't get it.