As part of our advocacy campaign to improve the care of Irish families living with EB, we met with the Minister for Health, Dr James Reilly in May. The Minister was very sympathetic to the difficulties experienced by families and was particularly interested to hear from our Family Ambassador, Liz Collins, on what life is like as the parent of a child with EB.
The Minister announced to us on that day, that EB would be among the chronic conditions to be included in the first wave of free primary care. To the best of our knowledge this is the first time that the government have announced that conditions, other than those on the long term illness scheme, will be included in the early phases of free GP care. This was a very welcome announcement which will hopefully result in a small saving for the families we represent, who do not currently have medical cards.