Ed Tobias was diagnosed with MS in 1980.
For multiple sclerosis patients today, it’s a challenge to keep tabs on all the drug development underway without falling prey to misinformation, explains retired broadcast journalist and MS patient Ed Tobias.
“These days, there are so many more treatments to provide a better quality of life than when I was diagnosed,” he explains. “But the misinformation that flows around the web — it means patients may be encouraged to have hope that may be a pipe dream.”
To help combat this, Tobias writes a patient column for the website Multiple Sclerosis News Today, and runs the blog The MS Wire. He stays busy debunking some of the misleading claims often left unscrutinized by news media.
Case in point: This NBC Nightly News segment that featured a woman who reported she was able to get rid of her wheelchair after taking a newly approved drug named Ocrevus.
“Lo and behold, now she is up and dancing,” said Tobias, who wrote about the segment, and the wider problem of misinformation on social media, in this post.
In this case, the TV segment illustrates a common problem–news media coverage that only profiles the most successful patient outcomes. The woman’s recovery, while heartwarming, is not what most patients will experience.
“It’s very difficult to explain to people that what you might have seen on network TV news or read in the newspaper or hear on the radio about the results of these drugs is atypical,” he explained. (Also worth noting: As we’ve reported, Ocrevus may not be any more effective than Rituxan, a cheaper and older drug, something news outlets tended to overlook in their news coverage.)
“That’s where the journalism community has a responsibility to add some perspective. I don’t oppose writing about new drugs or treatments, even if they’re small studies that haven’t even progressed past the mice stage,” he said. “But if you’re writing about a small study or an early study, I like to put those words in the headline. ‘Small study indicates…’ rather than, say, ‘New hope for MS.’”
Because MS patients are clamoring for information that helps them cope with all facets of the disease, Tobias casts a wide net. He recently dug into a study on seafood and MS that was generating a lot of news media attention.
“A lot of media outlets, ranging from websites … to local TV stations and newspapers, published or broadcast the limited information contained in the news release at face value. Did they jump the gun?,” he asks in the post. He calls attention to the many limitations of the research and cautions readers against making any snap decisions.
Tobias with his healthcare team after recently finishing a course of disease-modifying therapy.
One of the more troubling areas of misinformation, Tobias said, is related to unregulated stem cell treatments.
“That really can be dangerous,” he said. “People are paying a lot of money for those treatments, which may or may not help them and may also very well harm them at some point.”
This also is an area that HealthNewsReview.org has covered extensively; most recently, the pitfalls of GoFundMe crowdsourcing campaigns for stem cell treatments.
Media messages can cause real harm to real people. On our series page, see more stories like this and share your own.
But stem cell treatment is so expensive that most people don’t have the luxury of considering it, he also explained. Many are just trying to figure out how to pay for basic care, much less try the latest fancy new drug making headlines.
“There is a great deal of confusion about what’s covered by healthcare insurance policies, and Medicare and Medicaid,” he said. “I see awfully sad stories about people who can’t afford the drug any longer–and they also have no way of getting into any program that will pay for enough of it to allow them to use it. It’s just horrible and our government isn’t doing enough to help.”
These problems mean he has a never ending supply of topics.
“It’s what motivates me,” he said, adding, “and frankly I’m a retired guy who has missed writing. This keeps me active.”
But it’s not a role he takes lightly. As he explained in a blog post title “When You Read About MS Treatments, Read Past the Headline.”
As writers, we need to be careful about our words. Just the simple act of shortening a headline by removing “trial suggests” can cast the information that’s presented in a different light. We must write and edit responsibly, and guard against inflating facts for the sake of appealing to our readers.
Like physicians, we must first do no harm.
Disclosure: In 2017, Sanofi-Genzyme paid Tobias to attend a Lemtrada patient advisory board meeting.