Patients with rare diseases urge Dáil to pass law on orphan drugs

Three years after a bill on the issue was first proposed, patients say they are tired of agonising delays to accessing life-changing treatments

Daniel Murray

Political Correspondent @danieltmurray
25th July, 2021
Patients with rare diseases urge Dáil to pass law on orphan drugs
Emer O’Sullivan from Portlaoise suffers from Spinal Muscular Atrophy. Picture: Finbarr O’Rourke

Patients with rare diseases are calling on the government to pass a proposed law that could streamline their access to specialised drugs, three years after the bill was first introduced to the Dáil.

The original bill, brought forward in 2018 by John Brassil, the former Fianna Fáil TD, sought to amend the Health (Pricing and Supply of Medical Goods) Act 2013 to establish a new structure for Irish health authorities to assess, approve...

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