Micheál Martin (Cork South Central, Fianna Fail) | Oireachtas source

What is the status of the commitment in the programme for Government to produce a national rare diseases plan? The situation is becoming critical for people with rare diseases as the Taoiseach will be aware in terms of children and adults with PKU, for example, who are awaiting ratification of the drug Kuvan, which can have a very significant impact for people with PKU. The negotiations have stalled. There is an absence of any overall strategic approach to orphan drugs and rare diseases in this country. Increasingly as certain drugs are being developed we are having this unhealthy stand-off involving those in pharmacoeconomics, who acknowledge that the regime for orphan drugs is not strong enough and needs to be changed, revised and reformed. Meanwhile many children could benefit.

See this speech in context