Life after Pandemrix

Reuters's description of narcolepsy is excessively bleak

Reuters health and science correspondent Kate Kelland’s recent article about the growing evidence linking GlaxoSmithKline’s Pandemrix swine flu vaccine to at least 795 cases of narcolepsy in European children does a lot of things well.

Kelland takes care to explain how the case against Pandemrix differs from previous “vaccine scares” that turned out to be false, and she emphasizes various uncertainties while bringing readers up to date on the public health investigation, reporting that “independent teams of scientists have published peer-reviewed studies from Sweden, Finland, and Ireland showing the risk of developing narcolepsy after the 2009-2010 immunization campaign was between seven and 13 times higher for children who had Pandemrix than for their unvaccinated peers.”

Kelland, whom we’ve complimented before, also makes sure to explain that there’s more to narcolepsy, an incurable, lifelong disorder, than falling asleep or being tired, and the profound effect it will have on the lives of the children who may have developed it from the vaccine. She writes:

Emelie Olsson is plagued by hallucinations and nightmares. When she wakes up, she’s often paralyzed, unable to breathe properly or call for help. During the day she can barely stay awake, and often misses school or having fun with friends. She is only 14, but at times she has wondered if her life is worth living.

Unfortunately, in her attempt to convey what is at stake in the Pandemrix case, Kelland overreaches, describing narcolepsy as “life-limiting” and “an illness that all but destroys normal life.” The sense one gets after reading the article is that, for Olsson, the other 794 children who many have developed narcolepsy from the vaccine, and for all people with narcolepsy in general, life is an inescapable nightmare, and death is often preferable. As Swedish public health official Goran Stiernstedt says in the article, the 30-60 deaths the vaccine is estimated to have prevented were not worth the 200 cases of narcolepsy it may have caused in his country:

With hindsight, this risk-benefit balance is unacceptable. “This is a medical tragedy,” he said. “Hundreds of young people have had their lives almost destroyed.”

Yet narcolepsy, like most disorders, has degrees of severity. Olsson has all four major symptoms of narcolepsy: excessive daytime sleepiness, cataplexy, sleep paralysis, and hypnagogic hallucinations. According to the National Institute of Neurological Disorders, this actually puts her in the minority of people with narcolepsy, because just 10 to 25 percent of sufferers display all four symptoms during the course of their illness.

The symptoms themselves also vary. The most common major symptom after daytime sleepiness is cataplexy, occurring in “about 70 percent” of patients, according to the NIND. This can take the form of a brief, barely noticeable partial loss of muscle tone to a complete collapse lasting several minutes.

Dr. Eveline Honig, executive director of the Narcolepsy Network, the largest narcolepsy patient support group in America, has mixed feelings about Kelland’s depiction of narcolepsy.

“It is a very serious disorder, and very misunderstood, and very much not respected for the seriousness that it has … It’s not deadly, but it can devastate someone’s life completely,” Honig says. “The public tends to think, ‘Well, it can’t be that bad, just falling asleep once in awhile.’ It’s not like that.” Sufferers often feel isolated and misunderstood, and “sometimes lose everything.”

Sometimes. Not always.

“We have some very successful people in the business world with narcolepsy who are holding jobs and very well paid, very well respected,” Honig says. “But they’re very well controlled with medications and their lifestyle. You can have a very good life, but you have to find the right ways to deal with your disorder.”

This may well be true for Olsson. Though the disorder has surely had a profound affect on her life, photos that accompany the article show her participating in dance class, showing off her artwork, and putting on makeup — as well as, of course, the obligatory shots of her falling asleep in front of the television and napping in bed.

They indicate that Olsson has been able to keep up some semblance of her pre-diagnosis life, though that’s never mentioned in the article. Rather, “Emelie just wants to make the best of her life.” She takes drugs now to try to control her condition, but we’re never told how well they work for her. She is — understandably, considering what may have caused her condition in the first place —“uncomfortable” at the thought of having to take medication for the rest of her life, knowing full well that it may well come with side effects.

The only sense of anything resembling hope in the article is in this quote from Olsson: “In the beginning I didn’t really want to live any more, but now I have learned to control things better.” Basically, the best a person with narcolepsy can hope for is to “control things better” and not be suicidal. That’s a pretty bleak picture.

Asked about the hopeless tone of the article, Reuters spokesperson Barb Burg gave this statement:

We believe our story focusing on the links between narcolepsy cases in children in Europe and GSK’s swine flu vaccine was accurate and fair. In our story, we described the symptoms experienced by one individual suffering from narcolepsy to show why the vaccine is now under scrutiny.

We understand and agree that others may experience less-severe symptoms — though hers are far from unique. Our understanding from experts dealing with the cases linked to Pandemrix is that a common feature is that many have developed relatively severe symptoms quite swiftly.

That last point is important: Olsson may well be an accurate representation of the children whose cases are linked to Pandemrix, just not necessarily all people with narcolepsy worldwide. It’s a shame Kelland didn’t make this distinction.

“There’s not much hope in this article, and that’s wrong,” Honig says; “The facts are true, but you can do a lot to learn to live with it, and to live a full life with it.”

The best chance to do that is in getting a diagnosis and treatment as close to the disease’s onset as possible, but the average time from onset to diagnosis is between seven and 14 years. Frequently, that’s because the public and even many doctors aren’t completely aware of what narcolepsy is. Articles that fully explain it help increase awareness. That’s why it’s so important to get them right.

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Sara Morrison is a former assistant editor at CJR. Follow her on Twitter @saramorrison. Tags: , ,