Rare disease technology review group
Deputy Kenny asked when the rare disease technology review group would be established, warning that patients were being denied drugs by a flawed process. The Minister said the issue was acknowledged and that work on the group should begin very shortly.
A key recommendation of the national rare disease plan of the previous Government was to establish a rare disease technology review group. I understand there is a chair but no members. The Minister understands and is cognisant of the serious situation in this country whereby citizens cannot get certain drugs because of a very flawed process. This is a life or death situation for citizens and the Minister is aware of this. Will he comment on when this will be set up?
Comment on this
I thank Deputy Kenny for raising the issue. He is entirely correct. When it comes to a number of rare diseases, which affect a small number of people in the country, the quality-adjusted life year, QALI, test alone will never make it possible. As he correctly said, Professor Barry, the head of the National Centre for Pharmacoeconomics, NCPE, is undertaking a working group on this issue. Recently, I highlighted to him the priority I attach to this and I expect its work to commence very shortly. I will keep the Deputy informed.