Dáil Éireann Debate, Tuesday - 2 July 2024
452. Deputy Sean Sherlock asked the Minister for Health the reason no pathfinder programmes, such as the one recently announced for the RSV vaccine, have been implemented for patients with rare diseases and in need of newly licenced orphan treatments; and if he will make a statement on the matter. [28070/24]
Amharc ar fhreagraOn Rare Diseases Day 2023, I announced a plan to develop a revised National Rare Disease Plan, in line with the commitment in the Programme for Government.
Since then, a Rare Disease Policy unit has been established in my department. This unit liaises with the National Rare Disease Office in the HSE and relevant stakeholders.
A National Rare Disease Steering Group was established in December 2023, and it has met eight times since it first convened.
The Steering Group has been tasked with developing the new National Rare Disease Strategy and an associated Implementation Plan.
This Strategy will set out the vision for Rare Disease services in Ireland and the actions required to achieve this, while focusing on delivering positive change for people living with a rare disease in Ireland.
The New National Rare Disease Strategy is envisaged to be published in 2024, this will be dependent on the work of the Steering Group in the development of the Strategy.
Regarding orphan medicines, the State is committed to providing timely access to new and innovative medicines to all patients. Budgets 2021 to 2023 saw almost €100 million allocated for the reimbursement of new drugs, enabling the HSE to approve 148 new medicines. This included 39 orphan medicines.
