Campaigners are calling for a Europe-wide public inquiry into how a vaccine triggered devastating health sleep and brain disorders in a scandal they claim is as big as thalidomide.
Almost 1,700 people suffered narcolepsy after being vaccinated for swine flu. They are vowing to continue their fight for justice at the European Union.
The group of Europeans, including nearly 100 Britons, are calling for a public inquiry after suffering the debilitating disease which was triggered by use of the Pandemrix vaccine to treat the 2009/10 swine flu outbreak.
Narcolepsy is a rare neurological condition that affects the brain’s ability to regulate the normal sleep-wake cycle. This can lead to symptoms such as disturbed night-time sleep, excessive daytime sleepiness and cataplexy – the term given to sudden muscular weakness triggered by strong emotions such as laughter, anger and surprise. As a result, narcolepsy is often thought of as a sleep disorder, but its underlying cause means that it is better classified as a disorder of the central nervous system.
Families denied compensation
British families have been denied compensation from the Department of Work and Pensions under its compensation scheme as the Government does not recognise the condition as a “severe disability”.
Representatives of national narcolepsy groups from the UK, Ireland, Sweden, Finland, Denmark and Norway, and parents of affected children, met Vytenis Andriukaiti, EU commissioner for health and food safety, in Brussels in December.
They pressed him for recognition of the incident, and a public inquiry into lessons learnt for future pandemics. The group also called for the introduction of vaccine injury compensation standards across the EU, as there is a wide disparity in statutory vaccine injury compensation methods. They also called for clarity surrounding funding for research into treatment.
Unclear how vaccine triggered condition
While the vast majority of Pandemrix recipients had no adverse effects, there are now 1,698 adults and children across Europe registered in the EU database of adverse drug reactions who have developed narcolepsy following use of the H1N1 vaccine. While GlaxoSmithKline (GSK), the maker of Pandemrix, has acknowledged the link, and some patients and their families have been awarded compensation, how the vaccine triggered the condition is unclear.
Peter Todd, a solicitor who represents 88 injured people, compared the situation to the thalidomide scandal of the late 1950s and early 1960s. “Everybody is aware of thalidomide, but I think Pandemrix/narcolepsy is a bigger incident because the EU’s database has 1,698 people registered – and that’s a passive surveillance system,” he told i.
Similar to Thalidomide
“While there were hundreds of cases of birth defects caused by thalidomide, most cases involved shortening of one limb. I know that there were a few cases of multiple limbs shortening, but most cases were one and overall, if you weigh it up, it’s broadly comparable. Yet it doesn’t have the same public recognition.
“It’s now about seven years on from the pandemic and it did take considerable time for the epidemiology of Pandemrix and narcolepsy to become clear – the UK’s study in relation to adults and Pandemrix/narcolepsy was only published earlier this year. While the science is now settled you can’t find any clear acceptance of the incident on any EU or national government website. You can’t point to anything that amounts to official recognition. That’s why recognition from the EU is so important.”
‘Round-the-clock care for my daughter’
Narcolepsy is incurable and sufferers have a lifetime of managing the symptoms. Claire Crisp’s daughter Mathilda is one of the children affected following her swine flu vaccination. She began suffering extreme night-time sleep disturbance within two weeks of the vaccine and subsequently developed cataplexy. Within two months Mathilda, now 10, needed round-the-clock care.
“Mathilda was eventually diagnosed with narcolepsy with cataplexy,” Ms Crisp, 46, told i from the family home in California, where they felt compelled to go to seek help. “What followed was a year of battling for effective treatment whilst Mathilda continued to deteriorate.
“My husband looked for a job in California, which was not in our life plan, but we were desperate as carers, as a family, and convinced that if Mathilda didn’t get the treatment she needed, she would lose her childhood.
“Mathilda’s case was extreme, and extreme measure were needed to rescue her. I did everything I could to give her her life back. It was huge risk as we sold our home [to pay for treatment] and left our families and lives back in the UK. But I could never have lived with myself if I didn’t fight for her.”
Ms Crisp has written a book on her family’s trauma called Waking Mathilda – A Memoir of Childhood Narcolepsy, to be released this spring.
Mr Todd said: “We don’t want to undermine the vaccine or do down [its maker] GSK, but … for those that have been affected, it is quite important to have some kind of official recognition of what happened.”