Thursday, 4 March 2021

Questions (219)

Thomas Pringle


219. Deputy Thomas Pringle asked the Minister for Health the supports in place for persons with rare diseases in Ireland; and if he will make a statement on the matter. [12334/21]

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Written answers (Question to Health)

A National Rare Disease Plan for Ireland (2014 – 2018) was launched by the Minister for Health in July 2014. This is a generic policy framework for rare diseases. The scope of the plan is broad given that there are approximately 8,000 rare diseases affecting millions of EU citizens; and consequently, there can be a dearth of expertise and knowledge about some rare diseases, simply because they are so rare.

Many of the major recommendations of the plan have already been implemented including the establishment of a National Clinical Programme for Rare Diseases and a Rare Disease Office. Building on this progress, themes for inclusion in a roadmap for the coming period were agreed, with the Rare Disease Task Force, which comprises the main rare disease advocacy groups; Rare Disease Ireland, the Medical Research Charities Group (MRCP), and the Irish Platform for Patient Organisations, Science and Industry (IPPPOSI).

Meetings, to ensure that the input and the voice of the patient is represented in the continuing work ongoing in relation to Rare Diseases, have taken place with the Rare Disease Task Force, the HSE National Clinical Programme for Rare Diseases and the Rare Disease Office. A number of key themes were identified for progression and agreed with the RDT – Patient Awareness; European Reference Networks; Research & Registries; Access to Services; Access to Medicines; Diagnosis; Education & Training and Legislation & Policy. This will form the basis for work in this area in the time ahead.

In late 2020, the National Clinical Programme for Rare Diseases was operationalised and incorporated into the National Rare Disease Office. So, from 01 September 2020, the NRDO became the main contact point and driver for national HSE rare disease projects and initiatives. The work of the NRDO is overseen and governed by HSE Acute Operations under the governance of the Office of the Chief Clinical Officer, where the National Rare Disease Plan is firmly embedded.

The following benefits and schemes that can help with healthcare costs are available.

Under the Health Act 1970, eligibility for a medical card is based primarily on means. The Act obliges the HSE to assess whether a person is unable, without undue hardship, to arrange general practitioner services for himself or herself and his or her family, having regard to his or her overall financial position and reasonable expenditure. The issue of granting medical cards based on having a particular disease or illness was examined in 2014 by the HSE Expert Panel on Medical Need and Medical Card Eligibility. The Group concluded that it was not feasible, desirable, nor ethically justifiable to list medical conditions in priority order for medical card eligibility. In following the Expert Group’s advice, a person’s means remains the main qualifier for a medical card.

Under the Drugs Payment Scheme, no individual or family pays more than €114 a month towards the cost of approved prescribed medicines. The scheme significantly reduces the cost burden for families and individuals with ongoing expenditure on medicines.

The Long Term Illness Scheme was established under Section 59(3) of the Health Act 1970 (as amended). The conditions covered by the LTI are: acute leukaemia; mental handicap; cerebral palsy; mental illness (in a person under 16); cystic fibrosis; multiple sclerosis; diabetes insipidus; muscular dystrophies; diabetes mellitus; parkinsonism; epilepsy; phenylketonuria; haemophilia; spina bifida; hydrocephalus; and conditions arising from the use of Thalidomide.

Under the Long Term Illness Scheme, patients receive drugs, medicines, and medical and surgical appliances directly related to the treatment of their illness, free of charge.

Further information is available at

As this question also relates to service matters, I have also asked the Health Service Executive to respond to the deputy directly, as soon as possible.