THE MOTHER OF a seven-year-old boy who developed narcolepsy in the months after receiving the swine flu vaccine says she’s 100 per cent convinced that the jab caused his condition.
Mairead Lawless is a member of SOUND (Sufferers of Unique Narcolepsy Disorder) which is a group made up of parents and friends of children who have recently been diagnosed with narcolepsy in Ireland.
In July the European Medicines Agency said that there was a link between the sleeping disorder and the administration of the Pandemrix vaccine to children and young adults. It recommended that Pandemrix should not be given to people unless other influenza vaccines are unavailable and they are at a high risk of infection.
Earlier this month the National Narcolepsy Task Force in Finland said it could confirm that the Pandemrix vaccine had contributed to the increased incidence of narcolepsy among four to 19 year olds in Finland. The study also found that the narcolepsy associated with the vaccine was identified in persons who carry a specific genetic risk factor.
The Irish Medicines Board has confirmed to TheJournal.ie that it’s received 16 reports with clinical information which confirms a diagnosis in individuals who were vaccinated with Pandemrix.
Diagnosis
Mairead Lawless’ seven-year-old son Alex received the vaccine in January 2010. She decided to vaccinate he and his older sister as there was a small baby in the house.
By Easter 2010 he was sleeping for longer and longer periods during the day, up to three hours at a time. Lawless said that after a “long and tortuous” journey he was finally diagnosed with narcolepsy.
She made the link between the condition and the vaccine when she read about another case in the newspaper. She told TheJournal.ie that she is “totally convinced” that her son’s narcolepsy was caused by Pandemrix.
SOUND met with the HSE in July. The group said that specific commitments were given during the meeting but progress since then as been described as ‘minimal’.
The HSE has told TheJournal.ie that it is in contact with the families of reported cases of narcolepsy and is seeking to put the appropriate services in place, as required.
In a statement the HSE also echoed the findings in Sweden and Finland, and confirmed that since August 2010, a small number of cases of narcolelpsy have been reported in Ireland.
The HSE has also said that it has not yet been determined if the vaccine could have contributed to the development of the condition. It said that work is ongoing to find out “if there is a true association between the vaccine and the disease” with the results expected later this year.
It confirmed that it’s conducting its own study of all cases of narcolepsy in Ireland over the relevant time period. Nine hundred thousand doses of Pandemrix were administered at HSE clinics and by GPs in 2009 and 2010.
The Irish Medicines Board meanwhile has said that while 16 cases have been identified, there are others being investigated. Mairead Lawless has said that SOUND are aware of at least 20 children who have developed narcolepsy.
Lawless acknowledges that those who have developed the condition may be genetically pre-disposed to it, but said that it is her understanding that the vaccine accelerated the likelihood of narcolepsy presenting itself.
Compensation
Lawless said that the Finnish government have moved very quickly to agree to provide compensation for those affected, but that even applications for medical cards from the HSE on behalf of Irish children have been unsatisfactory, with one child being granted a card so far.
Reuters has reported that a compensation process is underway in Finland, while a spokesperson for GlaxoSmithKline – which manufactures Pandemrix – has said that the company is committed to ongoing research into narcolepsy.
Lawless said that some kind of monetary compensation is a concern, explaining that “it’s not just the medicines and monitoring costs, their childhood has been totally changed. We don’t know what to expect out of the future”.
She said that her son doesn’t play after school, and she worries that he may never be able to drive or hold down a job. The children who have been diagnosed with narcolepsy have returned to school this September with nothing in place for them, as the condition is not recognised as a disability.
Lawless said “if the HSE are saying that yes, they’re working away, then they’re silently working away, because we’re certainly not aware of it”.
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