I am speaking today on behalf of families living with Friedrich's ataxia who are running out of time while waiting for access to Skyclarys, the only approved treatment for this cruel disease. For these patients, every week that passes means more mobility loss, more independence gone and more heartbreak for families watching their loved ones deteriorate. This disease does not wait for meetings, reports or lengthy negotiations. These families need action, not more promises. Will the Minister, Deputy Chambers, now engage directly with the Minister for Health and the HSE to ensure the reimbursement process is prioritised, negotiations with the manufacturers are brought to a conclusion without further delay and every flexibility available to the Government is utilised to expedite the decision? Emma O'Shea is one of these patients, who do not have the luxury of time and who deserve to know that the full weight of Government is behind getting this treatment over the line.

The HSE is assessing this medicine in line with the criteria detailed in legislation. It is important to say that the company which markets this medication submitted the document ten months after the health technology assessment, HTA, was commissioned by the HSE. There has been substantial delay in relation to this. We received a commercial proposal on 27 May and the drugs group is meeting in July, as it does, bringing together the scientists involved to assess the effectiveness of the medication and the cost together. It is a scientific process led by our scientists and we need to let that process continue.