Muscular Dystrophy Society of Ireland GLC (Muscular Dystrophy Ireland)

Lobbying Organisation Muscular Dystrophy Society of Ireland GLC

Date published 18 Sep, 2025

Relevant Matter Public policy or programme

Public Policy Area Health

Period 1 May, 2025 to 31 Aug, 2025

Specific Details Campaign for equal access to treatments for SMA adults

Intended results Equal access to life-saving treatments for all adults with spinal muscular atrophy (SMA) in Ireland

Name of person primarily responsible for lobbying on this activity Alan Breathnach

Did any Designated Public Official(DPO) or former Designated Public Official(DPO) carry out lobbying activities on your behalf in relation to this return? You must include yourself, and answer Yes, if you are a current DPO or a DPO at any time in the past. (What is a Designated Public Official?) No

Did you manage or direct a grassroots campaign? Yes

What is the directive you gave to the grassroots campaigners? Asked MDI members and public to email their TD/Senator urging their 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. Also asked them to send a second follow-up email after the Leinster House event, urging TDs'/senators' continued support.

Was this lobbying done on behalf of a client? No

Mass communications

Email All Oireachtas Members Email your TD/Senator urging their 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. Also send a follow-up email urging their continued support.

Lobbying activity

The following activities occurred for this specific Subject Matter Area.

Email (2-5)

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.

Event / Reception (1)

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.

Email (2-5)

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

Email (2-5)

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

Meeting (1)

Meeting with Shane Moynihan TD to discuss the issue.

Email (2-5)

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.

Email (2-5)

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

Designated public officials lobbied

There were no DPOs directly lobbied during this return period on this specific Subject Matter Area.