There are a lot of scientific questions mentioned in this story, but the bulk of the “proof” offered rests on the small shoulders of one 10-year-old child with epilepsy: one patient showing improvement over one year with drug treatments that have yet to prove their efficacy in large, randomized trials but are known to have significant side effects when used long term.
There may be great promise in using anti-inflammatory agents such as steroids to treat epilepsy, and this story makes a good case that this is an area worth more attention. This story has some great information that is clearly explained, but it gives the impression that the world is on the cusp of a significant advance in treating epilepsy this way. The story highlights the positive findings in the research and downplays the negatives. Widespread clinical application would be many years away, assuming all trials go smoothly, which they rarely do. As we all know from Vioxx’s blockbuster sales and subsequent recall and lawsuits, early promise with anti-inflammatory drugs can end with serious side effects outweighing the benefits.
The cost of taking anti-inflammatory drugs – steroids or otherwise – could be significant over a lifetime. Some of those drugs already are on the market and, as the anecdotes in this story indicate, already being used by some doctors to treat epileptic patients. A few calls and a check on Drugstore.com could have provided readers a range of prices.
Everyone loves emotional anecdotes, and what could be more compelling than the story of a young boy who collapses and hits his head every time he suffers an epileptic seizure? Now that same boy, William Moller, is on a restrictive diet and is taking high doses of steroids regularly because his mother and his doctor believe that the steroids will control the inflammation that is leading to his seizures. In this 1,100-word story, 30% of the text is devoted to Moller, and the fact that his seizures have been under control for one year is used as the framing for a story claiming that “inflammation, the immune system’s response to injuries or foreign organisms, plays a pivotal role.” What would have been much more useful to readers is more proof, both to back up the claim that Moller has had a “miracle intervention,” as the story says, and to back up the claims in the story that, anti-inflammatory therapies “could at least supplement, and perhaps replace, anticonvulsants,” the drugs of choice currently for epilepsy. Yet the actual benefits from all the studies mentioned in this story are never quantified.
Very low in the story, it mentions harms, saying, “But there are dangers to this approach. Steroids — potent anti-inflammatories that some doctors are using for experimental treatments — can have harmful long-term side effects. And it remains unclear whether inflammation might be implicated in all forms of epilepsy or which patients might benefit from anti-inflammatory treatment.”
Animal trials are given the same weight as human trials, and the evidence from the human trials is given a very short amount of discussion. There was no critical evaluation of the quality of the evidence.
The story does not engage in disease-mongering. It provides some good information about epilepsy in clear terms. It says, “About 50 million people worldwide, including more than 2.7 million people in the United States, are struggling with epilepsy in some form. Half of all patients are children. Epilepsy can result from brain injury, but in most cases the cause is unknown and may be genetic. Refractory epilepsy, its intractable form, and the medications with which doctors attempt to treat it can cause lifelong problems with learning, memory and behavior.”
We applaud the reporter for talking to so many people for this piece. It must be noted, though, that most of the sources quoted in the story have a stake in the outcome of research on anti-inflammatories for drugs. The first is William Moller’s mother, Elisa, who has elected to give her sun mega-doses of steroids, unproven to show long-term efficacy without significant side effects. The second is William Moller’s doctor, Orrin Devinsky, director of the Comprehensive Epilepsy Center at the New York University Langone Medical Center. He, too, must be hoping that his treatment protocol for William and other patient’s is justified. Then there are Eleonora Aronica, a neuropathologist at the University of Amsterdam, and Annamaria Vezzani, a neuroscientist at the Mario Negri Institute for Pharmacological Research in Milan, both of whom have made inflammation’s relationship to epilepsy the central focus of their research. Dr. Jacqueline French, a neurologist at the N.Y.U. Comprehensive Epilepsy Center, is leading a drug trial for treating epileptics with anti-inflammatories. Only one expert appears to be speaking from a place of academic objectivity: Dr. Tallie Z. Baram, an epilepsy expert at the University of California, Irvine, who says, “Like any new field, there’s a lot of enthusiasm and almost a bit of religion involved.” Indeed. And the religion in this story wins out, with it ending on Elisa Moller being paraphrased saying, “anti-inflammatories were a miracle intervention for her son.”
The story does not do a good job comparing alternatives. For example, it mentions in passing that the same child who is being used as proof of a “miracle intervention” with anti-inflammatories is also on a restrictive diet, without providing any information about the proof — if any — of the efficacy of these types of diets.
By leaning so heavily on the William Moller anecdote, the story may confuse some readers as to whether anti-inflammatory treatments are widely available for people with epilepsy. But the story also makes clear in several places how one particular treatment being prepared for market – VX-765 – is progressing through the various clinical trials necessary for it to become a clinical application.
There is one claim of novelty in the story. It says, “The amount of inflammation in the brain correlates with the frequency of seizures, she also has found. ‘This is a novel finding,’ Dr. Vezzani said in an interview. ‘It was not known that inflammation was a common feature of different types of epilepsy.’” Given some of the other information in the story connecting inflammation to autopsy, we’re unclear on how this particular finding is novel. We give Dr. Vezzani the benefit of the doubt, but we wish that an independent source had been tapped to verify this claim of novelty.
The story does not rely on a press release.