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Dáil
‹ Ceisteanna ar Pholasaí nó ar Reachtaíocht - Questions on Policy or Legislation

Rare disease access scheme

Summary

Deputy O'Sullivan raised delays affecting people with rare diseases seeking access to trials and medicines, including through the early access scheme. The Tánaiste said the Government wanted significant progress during its term and would check with the Health Minister on the scheme's rollout.

I raise an issue relating to rare diseases. The Leas-Cheann Comhairle and I recently attended a meeting with sufferers of Friedreich's ataxia. The Tánaiste will be aware of the quest by people with Duchenne muscular dystrophy to have givinostat approved. I do not expect him to comment on that because it is subject to negotiation at the moment but the same thing is happening with a different cohort of patients. Some have come to this building to attend audiovisual room briefings and so on, all in the hope that they can access some rare clinical trial or rare medicine. That will keep on happening in perpetuity unless the system actually adjusts and changes. An early access scheme was mooted in the programme for Government. Has that work commenced and, if so, where are we at with it? Before long, we will be halfway through this term. If we do not get on with that job of work, we will be facing into the next election with nothing done.

Comment on this
Simon Harris The Tánaiste Fine Gael

I acknowledge, as I always do, that this is an issue the Deputy has prioritised since he came into this House. It is something about which I know he feels passionately. I will check with the Minister for Health where we are at in terms of the roll-out of the early access scheme. I assure the Deputy, and, most importantly, the people who have rare diseases and parents of children with rare diseases, that the Government absolutely intends to make significant progress on this during our term of office. We have already taken a number of steps in that regard. I will ask the Minister, Deputy Carroll MacNeill, to get back to the Deputy directly on the early access scheme.

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