Sweden still pays the price for narcolepsy
Audio 02:32
Between the end of 2009 and the summer of 2010, the world had already faced a pandemic, that of the H1N1 flu (illustrative image).
via REUTERS - HENDRIK SCHMIDT
By: Frédéric Faux
6 min
Between the end of 2009 and the summer of 2010, the world had already faced a pandemic, that of the H1N1 flu.
Sweden was then the country in the world where the vaccine, developed in emergency, had been the most distributed, covering 60% of the population.
Maximum coverage which has made it possible to identify a rare side effect, narcolepsy, which results in sleep disturbances, which can be very serious.
Today the link has been established between the vaccine and this incurable neurological disease and nearly 500 people have received and are still receiving financial compensation.
Publicity
"
That's against cataplexy, after that I have this to stay awake.
Usually I take two of these pills, another like this… and then one of these.
"
Matilda is only 23 years old, but her medicine-covered nightstand looks like an elderly person's.
This student was vaccinated against the H1N1 flu in 2009, when she was twelve years old.
A few months later, the first symptoms of narcolepsy, which disturbs sleep at night and puts people to sleep during the day, appeared.
“
I try to stay active because when I do monotonous things, when I sit, I fall asleep and it happens very quickly, I can't control it.
It can happen to me in class, on the train.
Of course I can't take the driver's license and there are lots of jobs I can't do.
I also take medication for cataplexy: it can happen after a strong emotion, for example when I laugh too hard, my knees give way and I fall, my whole body is like a pancake…
”
The link between this incurable disease and the most widely administered H1N1 influenza vaccine in Europe - pandemrix - was first established in Sweden and Finland.
The risk for 5-19 year olds to be affected was then seven times higher in vaccinated than in unvaccinated.
A health accident that poses a first question: could this side effect have been detected before, during the test phases?
For Pasi Penttinen, an expert at the Stockholm-based European Center for Infectious Disease Prevention and Control, the answer is no.
“
The main reason is that the disease is so rare - it usually affects 1 in 100,000 people - that it is not possible to spot it even during a phase III trial of a vaccine.
You can only do this when the vaccination has started, en masse.
"
Abnormal frequencies of narcolepsy have also been observed in other countries, but for the link to the vaccine to be possible, a massive vaccination campaign was required as in Sweden, where 60% of the population was vaccinated against the vaccine. H1N1, a world record.
Today, members of the association of victims of narcolepsy do not dispute the effectiveness of vaccines.
But concerning the next one, against the coronavirus, they doubt, like Matilda.
“
I want to wait and see if there are any side effects.
But it can take years, so I don't know
.
"
To limit the consequences of future vaccine problems, Sweden has set up a register which can be linked to other medical databases.
Newsletter
Receive all the international news directly in your mailbox
I subscribe
Follow all the international news by downloading the RFI application
google-play-badge_FR
Health and medicine
Sweden