The alliance — of which Ireland, the UK, Sweden, Norway, and Finland are members — was formed in Stockholm last weekend where support groups and legal teams from the five countries met to discuss developing a common strategy.
More than 800 people, mainly children, developed narcolepsy across the five countries after receiving Pandemrix, the main vaccine used to combat swine flu.
Mary Fitzpatrick, who travelled to the Swedish capital on behalf of Sound, the Irish lobby group representing those who developed narcolepsy after receiving Pandemrix, said they were moving their fight to Europe because the Irish Government was not providing adequate support for their children.
Ms Fitzpatrick’s 16-year-old son Conor Talbot developed narcolepsy, with cataplexy, at age 12 after receiving the vaccine.
Ms Fitzpatrick said complications mean that Conor is unable to take medication and cannot walk more than a couple of hundred yards without needing a wheelchair.
Sound (Sufferers of Unique Narcolepsy Disorder) has 60 members, 55 of whom were under 20 years of age when vaccinated in 2009/2010.
Ms Fitzpatrick, from Ballymun, Co Dublin, said the alliance was calling on each government to provide adequate supports for the injured to restore their quality of life and to allow them to reach their full potential.
“It was a very emotional weekend,” she said.
“Conor’s story was mirrored across the five countries. There were parents talking about how they never thought they’d need a babysitter for a 16-year-old.”
While Sound had hoped to include the aspiration that all five states respond in a unified way to citizens with Pandemrix-induced narcolepsy, Ms Fitzpatrick said this was vetoed by the other members on the basis that Ireland’s response to date would lower the bar.
“We understood what they were saying, but it was hard to hear it,” said Ms Fitzpatrick.
While those affected here have been given temporary medical cards, Ms Fitzpatrick pointed out that the condition is lifelong. She said educational supports, such as special needs assistants and exam aids, had been put in place for some children, but it was very ad hoc.
The alliance is seeking adequate financial comp-ensation in all cases in all countries.
As the vaccine was promoted on an EU level, the alliance will be seeking an EU inquiry into how it happened that a vaccine was used that adversely affected the health of their children.
The alliance is also demanding greater input from Pandemrix manufacturers Glaxo-smithkline, the state authorities, and the EU into research aimed at restoring their children to full health.
The alliance will meet again in the Norwegian capital Oslo in January and in Dublin in May. Legal teams from each of the five countries are also discussing strategies.
Narcolepsy is a chronic neurological disorder that leads to sleep deprivation, causing excessive daytime sleepiness, usually accompanied by sudden episodes of muscle weakness triggered by strong emotions such as laughter or anger.
This is known as cataplexy.
Narcoleptics may also suffer from sleep paralysis and hallucinations.
* For more information, contact Mary Fitzpatrick at 087 6989277