Narcolepsy victims in new compensation bid

Families of children in Sweden suffering from narcolepsy caused by vaccination for the swine flu can expect some form of compensation, Swedish health minister Göran Hägglund said on Sunday.

Narcolepsy victims in new compensation bid

So far, around 150 children in Sweden have developed narcolepsy from the Pandemrix swine flu vaccine, but that number could rise, according to Tomas Norberg, chair of the Swedish Narcolepsy Association (Narkolepsiföreningen).

Norberg, whose 17-year-old son Simon suffers from narcolepsy, was one of several parents who co-authored an opinion article published on Sunday in the Svenska Dagbladet (SvD) newspaper arguing that children who developed the condition after being vaccinated for the swine flu ought to be compensated.

“We’ve learned that our children have received a life-long handicap and need to eat dependency inducing medications with awful side effects in order to get through the day,” Norberg and the other parents wrote, adding their children’s ability to get hired and hold down a job has also been compromised.

“Now it’s time for prime minister Fredrik Reinfeldt and the rest of the government to take responsibility. We demand that the state take full economic and medical responsibility for our children, now and in the future.”

Previously, the families were told they would receive a one-time compensation of 50,000 kronor ($7,340) and that their needs would be assesssed again when they turned 18.

When Sweden agreed to purchase the drug from GlaxoSmithKline, the contract stipulated that the company would be free of responsibility to cover costs associated with any side effects.

According to Hägglund, the state will compensate those affected by narcolepsy caused by the swine flu vaccine.

“Yes, there will be some form of compensation for the roughly 170 children who’ve been affected,” the health minister told Sveriges Radio (SR).

However, Hägglund refused to specify how much the compensation might be or what form it might take.

“Our lawyers are looking into what’s the best way to shape the compensation. This is a terrible situation which no one anticipated.”

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Skåne hardest hit by ‘swine flu’ narcolepsy

Thirty-three cases of narcolepsy have been reported in Skåne after Sweden's massive vaccination campaign against swine flu in 2009. The southern region has been unusually hard struck by the vaccine Pandemrix's side effects.

Skåne hardest hit by 'swine flu' narcolepsy

Relative to population size, far more narcolepsy sufferers have been discovered in Skåne than northern Norrland, for instance, regional newspaper Skånskan reported.

Fewer than five cases of narcolepsy have been reported north of central region Dalarna.

A study, conducted by the Swedish Medical Products Agency (Läkemedelsverket) and Skåne region’s Centre for Communicable Disease Control (Smittskydd Skåne), is now underway to find out what lies behind the regional differences.

“For now, all we can do is speculate about the reasons. But it’s already clear that we have more cases of narcolepsy here in Skåne than in other parts of the country,” said epidemiologist Håkan Ringberg, from the Centre for Communicable Disease Control, to Skånskan.

One sufferer from the region is 16 year-old Belinda T. Marazanye, who described her symptoms to national newspaper Svenska Dagbladet (SvD):

“I experience strange dreams, I’ve lost my appetite. It’s hard to sleep at night and you get these hallucinations.”

60 percent of Sweden’s population was vaccinated with Pandemrix when swine flu broke out in 2009.

According to SvD, six lives were saved by the vaccine.

Nationally, a total of 177 persons have now been reported to have contracted narcolepsy following the vaccination.

Narcolepsy is a neurological disease which strikes against the brain’s regulation of sleep. A sufferer may be struck by sudden attacks of sleep, often several times per day. Other symptoms include general tiredness and some loss of motor control.

There is no cure for the disease, although symptoms can be treated with medication.

“I hope that one day God will help all of those who got this disease after the shot,” said Belinda T Marazanye to SvD.

“My wish is that scientists can find medicine that helps cure narcolepsy,” she continued.