Support urgent access to Givinostat for boys with Duchenne muscular dystrophy

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TDs & Senators in Laois

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TDs
Deputy Willie Aird (FG)
Deputy Seán Fleming (FF)
Deputy Brian Stanley (IND)

Senators
Senator Maria McCormack (SF)

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Dear (each TD / Senator will get a separate, personalised email),

I am writing to ask for your support in helping secure urgent access to Givinostat for boys living with Duchenne muscular dystrophy (DMD).

Duchenne is a rare, progressive and life-limiting neuromuscular condition that causes irreversible muscle loss. For children living with Duchenne, time is muscle. Every delay can mean further progression of the condition and lost opportunities to preserve muscle function and abilities.

It has now been one year since Givinostat was approved by the European Medicines Agency (EMA), yet Irish boys are still waiting for access.

Over the past year, families have watched their sons continue to lose strength, mobility and independence while reimbursement processes continue. Abilities that many children take for granted are becoming harder or disappearing altogether… standing up after a fall, rising from a chair independently, climbing into and out of the car, climbing stairs, even walking.

The reality is that some boys who were eligible for Givinostat when it was approved may no longer be eligible today. Others are dangerously close to losing that opportunity. Families are left wondering what might have been different had access been available sooner.

Families should not have to watch their children lose abilities while waiting for access to a treatment that already exists.
These are not delays that can be reversed. Lost abilities cannot be recovered.
Time Is Muscle for Duchenne boys.

The HSE Drugs Group is due to meet on the 10th of June to consider Givinostat for reimbursement. Families understand that processes must be followed, but what we are asking for now is urgency, transparency and clear timelines. Whatever the outcome of this meeting, there must be no further unnecessary delays.

Duchenne boys have already waited long enough.
Time Is Muscle. Every month matters. Every week matters. Every day matters.

Specifically, we are asking for your support in the following ways:
1. To attend the AV Room, Leinster House on the 11th of June from 11am – 12pm to show your support for families living with Duchenne, hear directly from those affected, and stand alongside in calling for urgent access to Givinostat. This meeting marks one year since families first came to Leinster House to raise this issue, yet boys are still waiting for access to this life changing medication.

2. To advocate for urgent access to Givinostat and ensure there are no further avoidable delays once decisions are made. This includes supporting proactive engagement with the HSE and clinical teams to ensure rollout planning begins early, so that implementation does not become a further barrier to access.

3. To ensure that eligibility criteria for Givinostat are aligned with the NICE approach, ensuring access for boys who can walk or who can stand with or without support, so that Irish boys are not disadvantaged compared to those in the North of Ireland and receive equitable access to treatment.

4. To continue to keep urgency and momentum at the centre of this process, and to speak up at every opportunity to ensure progress is not delayed at any stage.

I am asking for your support so that these families are not left waiting any longer than they already have.

Thank you for your time, understanding and continued support. I would be very grateful for your help in making sure Duchenne boys in Ireland are not forgotten or left behind in this process.

I would appreciate hearing whether you are able to support these requests.

Yours sincerely
etc,