This week, the group was given fresh hope that the challenges they face will be acknowledged after a tribunalordered the government to pay £120,000 in damages to a 12-year-old boy whose narcolepsy was also linked to Pandemrix.
Tonge, who celebrated her 18th birthday last week, described the government’s stance as unjustifiable, saying narcolepsy had changed her life has been changed deeply and irreversibly.
She falls asleep on average 40 times a day, sometimes for a few seconds mid-conversation, but other times for a lengthy nap. She also suffers from cataplexy, the complete loss of muscle control after a sudden burst of emotion such as surprise or happiness.
“I’ve had some bad experiences, falling down stairs or off a chair on to tiles,” she said. “Sometimes my neck falls too far back or forwards and it can restrict my breathing, which is terrifying really.”
Taking public transport on her own is a risk but her condition rules out learning to drive, and her A-levels were a struggle that she only got through with gritty determination.
“It’s two years I’d quite happily forget,” she said. “I used to be a complete bookworm, but I can’t really read anymore because I have to exert so much energy to get through a passage. It’s quite distressing really.”
Her Spanish A-level exam, which normally takes two hours and 45 minutes to complete, took her five and a half hours. “You listen to something once and then you fall asleep,” she said.
When Tonge goes on a rare night out with friends she has to decide whether to come off her medication so she can have a drink, and she worries about her safety in the dark, chaotic atmosphere of a nightclub.
“When you have cataplexy it makes you slur and stagger and look like you’re drunk. I’ve been in situations when I’ve had to hang on to someone for a few minutes and people have thought I was drunk.”
She takes three medications for narcolepsy and two others to deal with the side-effects they produce.
Despite the hurdles she faces, Tonge is optimistic, independent and enthusiastic about her future. She is looking forward to moving out of home in September, when she hopes to study radio production at the University of Westminster.
The DWP wrote to Tonge’s family in 2013 to acknowledge that the vaccine, made by GlaxoSmithKlein (GSK), had caused the disorder. It argued, however, that she did not meet the threshold defined as 60% disabled, equivalent to the loss of a hand, for its statutory damages scheme, meaning she was not eligible for any compensation.
Her family now intends to appeal against the decision.
“When we got the letter, my mum was so angry. I was angry too, but my immediate reaction was just to laugh,” she said. “It was ridiculous. If someone has an incurable neurological disease caused by a vaccine they’ve been recommended to have by the government, you need to compensate them for that. You shouldn’t have to prove you’re damaged enough.”
A government spokesman said: “The vaccine damage payments scheme provides support in very rare cases where someone has become severely disabled as a result of immunisation against certain diseases. Decisions on claims take into account the individual circumstances of each case and the latest available medical evidence.”
A GSK representative said: “We are actively researching the observed association between Pandemrix and narcolepsy, and the interaction this vaccine might have had with other risk factors in those affected.
“We’re also continuing to support ongoing work from other experts and organisations investigating reported cases of this condition, and we hope these efforts will enable us to provide more answers in the future. We take the safety of patients who entrust their health in our vaccines and medicines very seriously.”
The science of narcolepsy
Narcolepsy is caused by the destruction of about 70,000 neurons in the hypothalamus that produce the “wakefulness” hormone orexin, also known as hypocretin. Without the hormone, people are left constantly on the brink of sleep.
How the cells are killed is unclear, but scientists believe the body’s own immune system is probably responsible, and that the condition is often triggered by an infection such as flu.
In the case of Pandemrix, scientists think that in rare cases the jab triggered a reaction in which the body’s immune cells confused the H1N1 proteins in the vaccine with orexin cells in the brain, causing them to be attacked and destroyed.
The link with the vaccine emerged through epidemiological data showing peaks in the incidence of narcolepsy in countries where Pandemrix was deployed during the swine flu pandemic. It revealed one case of narcolepsy for every 55,000 jabs.
It is impossible to be sure of the causes in any individual case, but the government accepts that Pandemrix was responsible in those who developed narcolepsy very soon afterwards.
“What did upset me the most about this story was not the vaccine story, which really is just bad luck, a perfect storm, but the fact that it took a while for these kids to be treated,” said Prof Emmanuel Mignot, a world authority on narcolepsy at Stanford University.
“And in young children, every year of non-treatment wrecks their future in a disproportional way in term of studies, self confidence, they often gain a huge amount of weight, cannot go to school.”
The condition can be controlled with a combination of powerful sleeping drugs at night and stimulants, such as modafinil, during the day. In the future, scientists hope to find synthetic versions of orexin, which do a better job at restoring normal sleep-wake cycles.
“Certainly, narcolepsy is as severe as losing one hand,” Mignot said. “Untreated, it can be hell. Treated, it is often manageable but never perfect. Like losing one hand, it is not necessarily the end of a productive life, but it is very life-altering and you must go in a new direction, take this into account for your entire personal and professional life.”