Ms Deirdre Callis:

Right now, if it is paediatrics, the main support is us or Crumlin Hospital. Adults link in with St. James's Hospital and again us. In the community the more severe types of EB have access to all the bandaging and equipment they need as well. The milder - I use that term very lightly - the diagnosis, the less is available to a person. A huge cohort of our families living with simplex work, so that would max them out of applying for a medical card. With the drugs payment scheme, if the dressing are on it, which a lot of them are not, people still have to pay €80 per month to access a certain amount of dressings. As my colleagues said earlier, it is not even a case of swapping those out for cheaper ones, because you cannot. Only these really specific dressings can be used and the price point is incredibly expensive.