THE MINISTER for Health is to meet a group of parents who say their children developed a chronic sleeping disorder having received the swine flu vaccine Pandemrix.
Although the Department of Health and Irish health authorities have stressed that clinical research into a potential link between the vaccine and narcolepsy has not yet concluded, the HSE is carrying out a study of all cases of the disorder in Ireland.
To date 30 potential cases have been identified, although this includes a small number of patients who may not have received the vaccine.
The Irish Medicines Board, the agency responsible for monitoring the safety of vaccines in Ireland, said yesterday there were 16 confirmed cases of narcolepsy in individuals vaccinated with Pandemrix.
The chairwoman of Sound (Sufferers of Unique Narcolepsy Disorder), Mary Fitzpatrick, whose 14-year-old son has been diagnosed with the sleeping disorder having received the vaccine almost two years ago, said there was “no doubt whatsoever” among parents that their children developed the disorder as a result of the vaccine.
She said the group, some of who have spent thousands of euro on getting their children diagnosed, would be seeking for those costs to be recouped, but added that “these children will need to be supported into the future as their lives have been changed completely”.
Mairéad Lawless, whose 6-year-old son Alex Donovan was diagnosed with narcolepsy, said it took 16 months and “several thousand euro” to reach a diagnosis.
“Apart from a childhood robbed I worry what’s ahead of him in his teenage years sitting exams; what will adult life be like for him? I’m worried he might never be able to hold down a job.
“It is my hope that the Government will compensate our children for their very uncertain future.”
Ms Lawless said she was fearful that there were many more children who have yet to be diagnosed as their parents do not have the financial means to privately pursue a medical diagnosis.
The Pandemrix vaccine was authorised in the EU in September 2009, and was used extensively during the 2009 swine flu pandemic when more than 30 million people were vaccinated with the drug in the EU.
In Ireland HSE clinics and GPs administered more than 900,000 doses of Pandemrix during the pandemic.
The Government gave indemnity cover to drugmaker GlaxoSmithKline at the time the vaccine was issued in 2009.
In August last year, Finland’s National Institute for Health and Welfare recommended that vaccination with Pandemrix be discontinued following reports of a link to narcolepsy.
Studies carried out in Finland and Sweden showed an association between Pandemrix vaccination and narcolepsy in children, resulting in a six to 13-fold increase in those countries.
The current advice from the European Medicines Agency is that the drug should not be used on persons under age 20 unless the recommended seasonal influenza vaccine is not available in cases where immunisation against H1N1 is needed.
The HSE has said use of the vaccine is no longer recommended, and that GPs have been advised to return any remaining stocks.
This year’s seasonal flu vaccine does not contain Pandemrix.
Narcolepsy is a disabling chronic neurological disorder which is characterised by excessive daytime sleepiness which is often accompanied by cataplexy, causing muscle weakness.
