Rare Diseases
Dail Éireann — 2026-05-20
============================================================

Mary Butler (FF), Waterford

I thank Deputy Ó Súilleabháin for raising this matter, which I am taking on behalf of the Minister for Health, Deputy Jennifer Carroll MacNeill. The Minister is aware of the case the Deputy referred to and acknowledges the very difficult circumstances outlined by him and how difficult the situation described is for this young teacher and her family.
In relation to the EU treatment abroad scheme, the HSE operates the scheme for people entitled under EU Regulation No. 883/2004. The Minister for Health has no role in directing treatment. Section 6 of the Health Service Executive (Governance) Act 2013 bars the Minister for Health from directing the HSE to provide a treatment or a personal service to any individual or to confer eligibility on any individual.
The treatment abroad scheme is a consultant-led scheme and allows for a public consultant based in Ireland to refer a public patient who is normally resident in Ireland for treatment in the public healthcare system of another European Union or European Economic Area member state, the UK or Switzerland. Under the EU regulations and guidelines, the EU treatment abroad scheme provides for the cost of approved public treatments in another EU-EEA member state, the UK or Switzerland, through the issue of form S2, where the treatment is among the benefits provided by the Irish legislation and where it is not available in Ireland, or not available within the time normally necessary for obtaining it in Ireland, taking account of the patient's current state of health and the probable course of the disease. It is important to note that there is no statutory framework for referral of public patients outside the EU-EEA member states, the UK or Switzerland, or for the funding of any such treatment.
The HSE has informed officials in the Department of Health that it received an application under the treatment abroad scheme, seeking funding of treatment in the USA, in this case on 1 April 2026 and that it has engaged with the applicant and her family regarding this matter. The HSE has advised that at this time the applicant did not meet the criteria of the treatment abroad scheme, which the Deputy mentioned, on two different grounds, namely, that the treatment sought was not to be provided within the EU-EEA, the UK or Switzerland, and she was not a public patient. The applicant is attending a consultant in a private capacity. The HSE treatment abroad scheme has advised that it suggested to the applicant's referring consultant that he engage with the relevant European reference network, ERN, the European reference network on rare multisystemic vascular diseases. The ERN enables specialists in Europe to discuss cases of patients affected by rare, low-prevalence and complex diseases, providing advice on the most appropriate diagnosis and the best treatment available. Ireland is an active participant in ERNs, with 18 recognised centres involved across a range of networks. Engagement with ERNs is an important step in ensuring that all appropriate EU-based expertise and treatment options have been explored.
I assure the Deputy that officials in the Department of Health will continue to engage with the HSE to seek further updates that all avenues within Ireland and the EU that may be open to the young woman in question and her family have been fully explored in response to the very difficult circumstances outlined by him. I will also take on board and discuss with the Minister the clause the Deputy raised in relation to exceptional circumstances which fall outside the scope of the current support that can be provided and to see whether that can be looked at as a matter of urgency.

---

Source: Houses of the Oireachtas. Licensed under CC BY 4.0 (https://creativecommons.org/licenses/by/4.0/). The Official Report is revised after first publication; the fetch timestamp below identifies the version quoted.

Record URI: https://data.oireachtas.ie/akn/ie/debateRecord/dail/2026-05-20/debate/main
Retrieved: 2026-09-28T05:50:47+00:00
Sitting date: 2026-05-20