Michael Healy-Rae (Kerry, Independent) | Oireachtas source

I will finish shortly, with the permission of the Ceann Comhairle. PKU is a genetically rare disease. The HSE wants to set up a working group to assess the reimbursement of orphan medicines and technologies, for example, Kuvan, which can greatly improve the quality of life for PKU sufferers. Has this group been put into action? The national rare disease plan recommends the setting up of a national budget to fund such treatments so there is no impact on individual hospital budgets, for example, at Temple Street hospital. Has the HSE made any progress to date? I thank the Ceann Comhairle for his indulgence.

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