The story zeroes in on a 10-year-old Idaho girl’s struggles with a rare, life-threatening form of epilepsy called Dravet Syndrome. The article implies a marijuana-derived extract called cannabidiol oil has helped people with similar ailments who sought alternatives to traditional anti-seizure medications. But it offers no evidence to support those benefits beyond the testimony of a parent with an afflicted child. In addition, the story doesn’t provide the context needed to understand the family’s efforts to legalize marijuana (aka cannabis) products in Idaho. Importantly, there was no mention of the fact that there is a commercial cannabidiol product available through the FDA’s Investigational New Drug program. The fact that this product is available elsewhere with sanctioning by the FDA would probably make a big difference in many readers’ perceptions of the issue.
U.S. states are increasingly legalizing and decriminalizing marijuana, invigorating efforts to legalize marijuana-derived products as well. Extracts of marijuana or active ingredients in cannabis, including cannabidiol oil, are often hailed as miracle cures for chronic or terminal illnesses including cancer, seizures, diabetes, Crohn’s disease, and more. Those claims aren’t backed up by evidence, but there are efforts underway to scientifically validate the effects of marijuana-based products. GW Pharmaceuticals recently obtained “orphan drug” designation for Epidiolex, an oral liquid that contains plant-derived cannabidiol without THC, for use in the treatment of Dravet syndrome. And if this FDA-sanctioned use isn’t available to Idahoans and others in states with restrictive marijuana laws, that matters quite a bit to those who might benefit from treatment.
The article does not include a single dollar sign. The reader is left wondering about the cost of traditional anti-seizure medications and that of cannabidiol oil, the subject of the story. Hemp oil is compared to cannabidiol oil and mentioned as a grocery store-available product, yet its price is also missing.
Readers are told cannabidiol oil can reduce the “amount and length of seizures in children,” but the story does not specify anything beyond this. How effective traditional anti-seizure medications are vs. cannabidiol oil is a critical comparison — and one not present in the piece. Likewise, there’s no explanation of the benefits of traditional anti-seizure medications.
The side effects of traditional drugs are well-described in the story. Those of cannabidiol oil, however, are not. Cannabis is often portrayed as a relatively benign recreational drug and, compared to drugs such as cocaine, heroin, and alcohol, it is. However, the potency of active ingredients in modern cannabis plants (e.g. THC) continues to climb with selective breeding and other techniques, which likewise increases the potency of marijuana extracts. Marijuana use has also been associated with poorer cognitive outcomes, owing to interference with brain development. While cannabidiol oil extracts without THC may not have the same effects, some discussion of this issue is warranted in an article about the treatment of children.
There is no mention of any study, nor any other convincing qualification of the benefits described in the story. Evidence on cannabidiol oil is admittedly sparse, but there are reports — including abstracts presented at a recent meeting and this published review of the evidence — that the story could have evaluated as part of its coverage.
We can’t rate this satisfactory, but we do give the reporter some credit for obtaining this quote: “Parent to parent, when you’re in a small community and 10 people that you know are all having success, that’s no longer anecdotal. That’s hope.”
It’s a pretty powerful statement that helps explain why parents might opt for treatment with an unproven remedy. But hope is not evidence. Capturing hope is not useful for readers if it’s not accompanied by an objective evaluation of the evidence.
We don’t think this story crosses the line into disease mongering. Yes, it does describe a supposed alternative treatment to seizure medications only in a beneficial light, and without any discussion of efficacy or safety. However, this syndrome is so rare, and terrible, that this article cannot be accused of exaggerating the prevalence or severity of the condition. If the parents were suggesting the condition is so widespread and so common that there needs to be rapid approval of the product for a large underserved population, that would be another story. They don’t say that. Nor does it sound like they are mongering the disease to make it sound commonplace, as if any patient with seizures should try cannabidiol oil.
No independent sources are cited. Only the child’s mother is quoted. There are cannabidiol oil researchers in universities somewhere standing by their phones waiting for a call. It would have greatly helped the story to include expert commentary on the efficacy of cannabidiol oil in treating severe epilepsy.
Alternatives are mentioned, e.g. traditional anti-seizure medications vs. cannabidiol oil, so this technically satisfies the requirement. However, the benefits and harms are not adequately described for either treatment. We’ll give the benefit of the doubt here, since the story at least raised the issue of alternative treatments.
The story notes that marijuana oil is illicit under Idaho law, which apparently makes it impossible for the family in the story to obtain it. But there are other limits to the availability. According to this report from the Dravet Syndrome Foundation, the experimental marijuana product Epidiolex has received orphan drug designation by the FDA and is approved for use on a case–by-case basis for physicians who treat children with this condition. However, the physicians must apply individually to receive the product, and the process is much more highly regulated than obtaining a normal prescription. The story should have explored this larger context, which applies to readers nationwide and not just to those in Idaho.
The story establishes the novelty of cannabidiol oil in Idaho and the effort to legalize its use there. As noted above, the story would have done well to explore the larger regulatory context, including the FDA’s Investigational New Drug approval that was granted in 2013.
There is no evidence of reliance on a press release. This appears to be a newsroom-generated story of finding an angle tied to a push for legalization of a marijuana-derived product.
Systematic, Criteria-Driven
Take all the issues enmeshed in any cancer screening story and amplify it with the liquid biopsy issue. @AP's @CarlaKJohnson. did a solid job here. https://apnews.com/article/science-business-health-hodgkin-lymphoma-oregon-ca899bb9c4c7f1859d4e9ce16a1cf78d
Come on, NY Times; you must do better than this. Important research doesn’t need hype and the “breaking news” BS doesn’t help readers or patients. https://www.healthnewsreview.org/2022/03/nyt-proclaims-breaking-news/
Comments (1)
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Voltaire
March 7, 2015 at 7:43 pmIs it just me, or has the AP gotten a lot more sensationalist the last couple of years? Especially USA related article… International, seem to me at least, not as affected.
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