National rare diseases plan
Deputy Micheál Martin asked about the promised national rare diseases plan and the stalled Kuvan approval for PKU patients. The Taoiseach said the plan had already been published and an office established, though he allowed he might be mistaken.
We now move to questions on promised legislation and not statements on promised legislation. One minute, one question, one Member.
Comment on this
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.
Comment on this
I have talked to medics about those who could benefit from the application of Kuvan but are not getting it.
Comment on this
I appreciate that, a Cheann Comhairle.
Comment on this
I may be incorrect in this reply and I apologise in advance if I am. I think the national rare diseases plan was published two or three years ago. One of its recommendations was the establishment of a national rare diseases office. I recall that because I remember opening it as Minister for Health a number of years ago. Perhaps I am incorrect in that regard.