Irish children who developed the completely debilitating condition of narcolepsy after receiving a swine flu vaccine called Pandemrix have yet to be offered the kind of comprehensive package of supports that children from other European nations have, and almost a year after an Irish government pledge that promised they would.
The Irish situation contrasts sharply with the action taken by the Finnish government, who set aside over $40 million to pay for medical care, travel costs for treatment, and other expenses of affected children.
According to the Irish Examiner, Mairead Lawless, whose son Alex, 8, has narcolepsy, said Irish Health Minister James Reilly had given 'a clear commitment' to the lobby group Sound (Sufferers of Unique Narcolepsy Disorder) that a paper would be put to the Government prior to the 2012 Irish Parliamentary summer recess proposing a package of supports. But this did not happen.
Then revised deadlines of September and October were also missed.
Lawless said that while some support had been made available, such as a temporary medical card and educational supports, they lacked any real permanency and parents fear they could be discontinued at any time.
'There is no long-term commitment as yet to children who now have a lifelong disorder due to vaccination with Pandemrix,' Lawless said.
Sound reportedly wants its 47 members, 38 of whom are under 18, to be supported financially if they are unable to work. They also want complete transparency regarding what allowances those affected are entitled to, and they want parents whose ability to work is compromised due to their children’s condition to have some form of financial assistance.
Last April, Reilly said his department was working with the Health Service Executive (HSE) and the Department of Education 'to put in place necessary supports' for those affected.
The promise was made on the day a government-commissioned report found there was a 13-fold increased risk of developing narcolepsy in children aged 5-19 who had received the drug Pandemrix.
In a letter to the minister last month, Sound chairperson Mary Fitzpatrick said they were 'extremely upset and frustrated' with the continuing lack of progress, given some of the children affected developed narcolepsy three years ago.
GlaxosmithKline, maker of Pandemrix, does not have to foot any of the bill for what happened to the children as it was given a State indemnity.