James Reilly (Dublin North, Fine Gael)

It is estimated that approximately 250,000 Irish children and adolescents aged five to 19 received Pandemrix vaccine to protect them against pandemic, H1N1, swine flu. Thirty potential cases of narcolepsy have been identified, 16 of which have been confirmed by the Irish Medicines Board as having been vaccinated with Pandemrix. Of the 16 cases, 15 were under 18 years of age. The remainder of the cases include those who have not had a final clinical diagnosis of narcolepsy and also includes a small number of patients who have been diagnosed but who may not have had Pandemrix vaccine.

The Department of Health and the Health Protection Surveillance Centre, HPSC, of the HSE are working with the Irish Medicines Board and clinical experts in narcolepsy to examine the Irish data. However, the number of cases in Ireland is relatively small and may not allow causality to be determined. The results of this study are expected before the end of the year. Further studies are also ongoing in several European countries.

Relevant health care professionals, that is, GPs, paediatricians, psychiatrists, clinical psychologists and public health nurses have been advised on the possible association between Pandemrix vaccination and narcolepsy and on the referral of suspect cases for diagnosis. The HSE has agreed to provide discretionary medical cards to children affected on an interim basis pending the outcome of decisions to be made around supports necessary on an ongoing basis.

A group called Sufferers Of Unique Narcolepsy Disorder, SOUND, has been set up by parents. This group is actively engaged with the HSE and has two representatives on the HSE incident management team that is managing this issue.

The Department of Education and Skills together with the National Council for Special Education is also considering what further supports are required for the education of the young people affected.

Later today I will meet with representatives from SOUND and I understand that a meeting is being arranged with the Minister for Education and Skills also.

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