Muscular Dystrophy Society of Ireland GLC (Muscular Dystrophy Ireland)

Lobbying Organisation Muscular Dystrophy Society of Ireland GLC

Date published 16 Sep, 2026

Relevant Matter Public policy or programme

Public Policy Area Health

Period 1 May. 2026 to 31 Aug. 2026

Specific Details Reimbursement of Givinostat (Duvyzat®) for boys living with Duchenne Muscular Dystrophy (DMD).

Intended results Reimbursement of and timely access to Givinostat (Duvyzat®) for boys living with Duchenne Muscular Dystrophy (DMD).

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? Email your local TDs and senators to call for: Urgent access to Givinostat, No further delays, Rapid rollout planning, Continued political support.

Was this lobbying done on behalf of a client? No

Lobbying activity

The following activities occurred for this specific Subject Matter Area.

Letter (1)

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.

Letter (1)

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.

Designated public officials lobbied

The following DPOs were lobbied during this return period on this specific Subject Matter Area. These DPOs were involved in at least one of the Lobbying Activities listed above, but not necessarily all of them. As returns are specific to a Subject Matter Area the above Lobbying Activities may be associated with multiple returns.

Jennifer Carroll MacNeill Minister (Department of Health)