Narcolepsy victims demand Reilly provide life-long support

Young children who developed a chronic sleep disorder after receiving a swine flu vaccine were among an 80-strong group to march on the health department yesterday seeking a range of permanent supports.

The march, orchestrated by Sound (Sufferers of Unique Narcolepsy Disorder) took place on the year anniversary of the publication of a government-commissioned report which confirmed a link between the Pandemrix vaccine and an increased incidence of narcolepsy in children who received it.

Sound represents 54 children and young people affected by narcolepsy post-Pandemrix.

Sound spokeswoman Mairéad Lawless said they wanted to highlight the fact that Health Minister James Reilly has not followed through on a commitment made last year to provide a package of supports, despite telling the Dáil the supports were a “priority”, with some already in place, including rapid access diagnosis, temporary medical cards and reimbursement of expenses.

However, Ms Lawless said their children needed life-long medical cards, because narcolepsy is incurable. In addition, they are seeking recognition of narcolepsy as a disability; continuing educational supports to include special needs assistants, resource hours, exam help and home tuition; a special grant for third-level education; work or training opportunities for those who did not access third-level education; access to new drug treatments; rapid access to carer allowances; and compensation for chronic illness.

However, Mr Reilly, in Cork yesterday for a housing conference, was vague in relation to longer-term needs of the children.

“We can only start talking about that as the longer-term becomes clearer to us. We don’t have that much experience of it [the condition]. But what I want to do is give an undertaking to support them in every way I can from a medical perspective,” he said.

Mr Reilly said he would have to “talk to Ruairi Quinn” about educational supports and that he was “not in a position” to give a definitive answer on long-term supports except to say those with narcolepsy are “right to be worried about next year in particular, and we need to plan that with them and meet their needs. Absolutely”.

Sinn Féin health spokesman Caoimhghín Ó Caoláin, who took part in the march, said those affected by narcolepsy post-Pandemrix were “a small but very specific cohort of young people that should be given the supports to allow them lead the kind of life they would have expected to live had they not been exposed to the disturbing effects of a vaccine”.