Muscular Dystrophy Society of Ireland GLC

MDI CEO met with the Minister on 16 July, at which he advocated for Review criteria for Long Term Illness Scheme to include amyloidosis and the neuropathies such as Charcot Marie Tooth and spinal muscular atrophy (SMA), with a specific timeline and commitment in place. He highlighted the inequities in the Long-Term Illness Scheme, noting that people living with such conditions remain excluded despite comparable levels of disability and support needs to those living with eligible conditions.

MDI CEO met with Emer Higgins, TD, Minister of State with responsibility for Disability, at the Department of Health on 16 July and advocated for improvements to the process for neuromuscular treatment reimbursement applications currently under review.

Joint letter from Friedreich’s Ataxia Research Alliance (FARA) Ireland Ireland and MDI to Joint Oireachtas Committee on Health, asking that it uses its platform to: Advocate for prioritisation of the assessment and reimbursement process for Skyclarys; Engage with the relevant stakeholders, including the HSE and NCPE, to ensure that the urgency of this matter is recognised; Highlight the unmet need faced by individuals living with Friedreich’s ataxia in Ireland.

Joint letter with Friedreich's Ataxia Research Alliance (FARA) Ireland to the Minister for Health on 21 May asking for her Department to prioritise and support an expedited review and reimbursement process for Skyclarys, (omaveloxolone) for for eligible people living with Friedreich’s ataxia.

Asking the Minister for Health to advise on the date of the HSE Drugs Group meeting re reimbursement of Givinostat (Duvyzat®) and continue to support the progression of the application through the final stages of reimbursement in a timely manner.Also requesting that her department supports the timely approval of a full-time Clinical Nurse Manager Grade 2 position within CHI to ensure the treatment can be safely and effectively integrated into the care pathway without further delaying access.

Requesting that the HSE consider the eligibility criteria adopted by UK National Institute for Health and Care Excellence (NICE) when determining access to Givinostat in Ireland. NICE includes boys with DMD who can walk, as well as those who can stand with or without support. Adopting a similar approach would help ensure fairness and avoid boys in the Republic being disadvantaged compared to their peers in Northern Ireland.

Asking for continued support regarding the reimbursement of Risdiplam (Evrydsi) for adults with SMA.

Requesting a meeting with Emer Higgins, the Minister of State attending cabinet with responsibility for Disability, to discuss the reimbursement of treatments for muscular dystrophy and related neuromuscular conditions, and other matters related to the wellbeing of members of Muscular Dystrophy Ireland.

Submission included: - access to treatments for all adults with SMA, and to emerging therapies for DMD;- implement approved newborn screening for SMA; - develop Early Access Treatment Programme and ensure infrastructure and workforce readiness for newly approved therapies.We urged the Committee to ensure that Ireland’s approach to rare disease policy, from newborn screening to medicine reimbursement is guided by transparency, timeliness, and compassion.

A brief meeting took place at MDI’s National Conference on 7 December 2025 between Minister MacNeill, Bindu Nair (MDI Chairperson) and Emer O’Sullivan (MDI Board Member). The Minister had attended the conference to address attendees on a range of issues of interest to them.

Campaign briefing in the AV Room, Leinster House on 27 May 2025, calling for equal access to treatments for all adults living with SMA in Ireland.

Discussed with Councillor Caroline Brady submission of motion in support of campaign to South Dublin County Council.

Email to Dr Colm Henry, Chief Clinical Officer, HSE requesting 1. clarification on the individual patient approval system put in place by the HSE to enable reimbursement for patients who meet pre-defined criteria for treatments as per a HSE-devised managed access protocol and 2. a meeting to discuss the above.

Follow up thank you for support/ attending / raising PQs; clarifying any issues; and urging continued support.

Joint email from MDI CEO and SMA Ireland Director urging all current Oireachtas Members' support by: attending a briefing on the campaign at the Audio-Visual Room, Leinster House on 27 May; leveraging their role as elected representative to address this injustice; sharing campaign posts on social media. Approx 2 - 5 emails per DPO.

Meeting with Shane Moynihan TD to discuss the issue.

Seeking a meeting with Minister for Health, Jennifer Carroll MacNeill TD to discuss the issue.

Briefing on the campaign held at the Audio-Visual Room, Leinster House on Wednesday 11 June.

MDI CEO met with Olivia Rooney TD to discuss the matter further.

MDI CEO sought an opportunity to discuss the matter further with the Minister for Health.