Jack Chambers (Dublin West, Fianna Fail) | Oireachtas source

I thank the Senator for his statement and feedback and, in particular, the feedback from many of the people he engaged with who are seeking progress relating to this orphan drug, which has made progress in the United States. I will reflect that feedback to the Minister for Health, Deputy Stephen Donnelly. As well as dedicated funding for new medicines, the Minister plans to develop a revised national rare disease plan. Initial work for the new plan has begun. This plan will be a key step in progressing an improved overall service for individuals living with a rare disease. The Minister and officials in his Department will monitor the progress of Omaveloxolone with interest. As I said, decisions on approval or reimbursement will be then the statutory responsibility of the HSE.

I will, however, fully reflect what the Senator said back to the Minister, in addition to the feedback from various people in Sallins and elsewhere, to whom this matter is of particular interest. I appreciate him raising it.