Boy with narcolepsy blocked from seeking documents, Dáil told

Independent TD Clare Daly has claimed a 14-year-old boy suffering from narcolepsy has been obstructed from seeking documents under discovery by State agencies.

She said narcolepsy was a lifelong debilitating disorder caused by the Pandemrix vaccination issued for swine flu in 2010.

Ms Daly told the Dáil the Health Service Executive (HSE) and the State Claims Agency (SCA) had gone into the High Court last week, "unnoticed and undocumented'', to obstruct the boy and other sufferers seeking the documentation.

Ms Daly said the HSE and the SCA had said they would voluntarily disclose the documents in 2015.

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"We need to be clear about the fact that the HSE decided to purchase Pandemrix and continued to distribute it even after it knew it was dangerous and untested and before most of the public in Ireland received it,'' she added.

“It knew there was a sevenfold or eightfold risk of serious adverse effects in comparison with its sister drug and alternative vaccinations for which there were no adverse side effects.’’

Ms Daly said the Government was continuing to deny the requests of victims for discretionary medical cards and other benefits.

“I want to know why Ireland is the only country that does not operate a no-fault vaccine damage payment scheme,’’ she added.

Ms Daly said the boy could fall asleep without warning and had smashed his teeth and broken his bones.

“He experiences terrifying hallucinations in a state of sleep paralysis,’’ she added. “He has to be given expensive anaesthetics so that he can get a few hours’ sleep.’’

He suffered from anxiety and depression to the extent had had tried to kill himself, she said.

Taoiseach Enda Kenny said he did not know why the HSE, having said it would voluntarily disclose the information sought, seemed to have had a sudden change of direction. He would follow the matter up, he added.

Mr Kenny said Minister for Health Simon Harris had met representatives of the support group for people with narcolepsy in recent days and had sanctioned the go-ahead for the centre of excellence for sleep disorder in St James's hospital.

He said the programme for government included a commitment to examine supports for people who had been harmed by vaccines.