Patient advocates welcome drug for severe skin condition

• Published date: 30 June 2022

Debra Ireland represents about 300 patients, many of them children, who suffer from the condition, which sees their skin blister at the slightest contact

"It's a groundbreaking achievement," said Debra Ireland chief executive Jimmy Fearon. "Twelve years ago, there was nothing on the horizon and we were trying to encourage small bits of research at university level. We are overjoyed at the news that there will now be a treatment for EB."

However, it remains unclear when patients in Ireland will get access to the drug, which has been developed by Irish rare drugs group Amryt Pharma. The drug, Filsuvez, must now undergo a health technology assessment - a value for money exercise - before a decision is taken on whether it will be made available to patients here.

"We have no idea what it will cost but you can be sure it will be expensive," Mr Fearon said. He is hoping that, given the very small patient population, the cost involved will be seen as modest in relation to the medicines budget alongside the fact that there is no...