A 23-year-old nursery assistant who developed narcolepsy after receiving a swine flu vaccine took her own life last year, telling her family that living with the incurable sleep disorder had become unbearable.
Katie Clack’s death raises fresh questions about the government’s long refusal to compensate about 80 people who developed narcolepsy as a rare side-effect of the vaccine, on the basis that the condition is not serious enough to merit payouts.
In an interview with the Guardian, Katie’s sister, Emma Sutton, 25, said that narcolepsy had turned her sister’s life into a terrible struggle, describing how she was transformed from an energetic young woman who had just discovered her passion working with children, to someone who was heavily dependent on her family and crippled by mental health problems.
“We cannot believe she would have decided to take her own life had the balance of her mind not been disturbed,” said Sutton. “We feel she was let down by the defective vaccine, which caused her narcolepsy and by the insufficient intervention and support, which ultimately led to this tragedy.”
In a note, written on the day that she died, Katie urged her family to pursue her legal case, saying that she had been left with “no quality of life”.
“She said she wanted us to pursue claims because the narcolepsy caused her depression and led to a tumble of suicidal thoughts,” said Sutton. “She said: ‘It’s very important to me that you pursue this.’”
An inquest, due to take place this summer, will consider whether Clack received adequate medical care and the role her illness may have played in her death.
The nursery worker, from Peterborough, received the Pandemrix jab, made byGlaxoSmithKline, when she was 18 as part of a national vaccination scheme during the 2009-10 swine flu pandemic. Clack was in a high priority group for immunisation because she worked with young children – a job in which she excelled after finding school difficult due to her dyslexia.
“We were all so proud of her. She really loved children,” said Sutton, describing how her sister would turn up at her house to play with her two young daughters. “The toys were out, the paint was out, within a matter of minutes it was like a hurricane. They loved it.”
While the swine flu outbreak never reached the proportions that were initially feared, scientists believe that the vaccine, which was given to about 6 million people in Britain, caused narcolepsy in a tiny fraction of patients.
The government accepts this link, but has so far argued those affected do not meet the threshold for the Department for Work and Pensions’ vaccine compensation scheme, which automatically awards a £120,000 lump sum to anyone with “severe and permanent” disabilities.
A few weeks after receiving the vaccine, Clack began feeling overwhelming daytime sleepiness, a defining symptom of narcolepsy, and was sleeping 18 or 19 hours each day by the time she was diagnosed a year later.
“Sometimes she’d leave work at 3pm and wouldn’t get home until 7pm because she’d fall asleep on the bus and go around Peterborough several times,” said Sutton. “She was so shy she would never ask the bus driver: ‘Can you wake me up?’ People used to take pictures of her on their phones and were really nasty, not knowing, obviously. They’d think she was drunk.”
Clack also began suffering from cataplexy attacks, the total loss of muscle control during sudden bursts of emotion, such as happiness, which caused her to collapse without warning. She suffered night terrors, imagining that she was surrounded by giant spiders, and sleep paralysis, the temporary inability to move on waking up.
Although she continued to live in her own flat, Clack stopped taking baths after falling asleep with the taps running and flooding her neighbours’ flat, cooking meals was too risky, she lost a series of jobs and gained a large amount weight – a common side-effect of narcolepsy.
“She said: ‘You can’t imagine my life. I have no life.’ That rings in my head a lot,” Sutton recalled.
In 2013, she began suffering psychotic episodes and said she was hearing voices, possibly linked to the high dose of the stimulant drug, modafinil, that she was prescribed to help her stay awake. She was admitted to hospital several times, spending her 21st birthday on a psychiatric ward.
Sutton said the government’s rejection of compensation claims from about 80 other patients was incomprehensible and welcomed a landmark ruling last month by the upper tribunal court ordering damages to be paid to a 12-year-old boy. “If they lived with one of these people for a day, they’d change their mind. It just seems crazy.”
While alive, Clack was one of a group pursuing an ongoing civil action againstGlaxoSmithKline, which manufactured the vaccine. The costs of any financial settlement are likely to be met by the taxpayer because of an indemnity signed between the government and the pharmaceutical giant.
Separately, Clack’s family applied posthumously to the DWP’s Vaccine Damages Scheme in October (she did not apply while alive), but are yet to receive a decision. The government wrote to the family in June to say it was seeking legal advice on the case. “We just feel let down,” said Sutton. “My mum just really wants someone to say they are accountable.”
Dr Mike Fitzpatrick, a former London GP who has spent much of his career promoting vaccines, said the medical case of the family was compelling. “I don’t understand why DWP doesn’t agree to provide compensation,” he said. “The crucial thing to maintain public trust is to provide compensation on the very rare occasion that there’s an adverse effect. It’s a vital principle to uphold here. The personal stories are catastrophic.”
A Department of Health official said: “Narcolepsy is a distressing illness and our deepest sympathies go to Katie Clack’s family and friends following her tragic death. Pandemrix vaccine was used to prevent serious illness and deaths during the swine flu pandemic in 2009-10. At the time, the possible association with narcolepsy was not known. This remains under scientific investigation.
“We have agreed to fund the treatment of claimants with Xyrem, and are working with both their lawyers and the vaccine manufacturer to consider the personal injury claims as quickly as possible. We cannot comment on any individual case.”
A GSK spokesman 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.”