Rare Diseases

Rare disease committee has still to be set up despite three-year wait

A committee to evaluate drugs for rare diseases has yet to be set up three years after a Government report recommended its establishment.

The HSE confirmed the Rare Disease Technology Review Committee has a chair, but no members, and is not expected to be in place before the first quarter of 2018. The setting up of the committee was a key recommendation of the national rare disease plan for Ireland 2014-2018, launched by then health minister James Reilly.

The need for such a committee was highlighted recently at a hearing of the joint Oireachtas health committee where politicians pointed to the difficulties of obtaining state reimbursement for orphan drugs.