Smithsonian’s imbalanced stem cell coverage: Will it help dodgy clinics lure desperate patients?

Smithsonian Magazine’s American Ingenuity Awards aim to celebrate the “cutting edge of American achievement” by recognizing innovators in a variety of fields.

But in its zeal to honor a groundbreaking stem cell researcher, the official journal of the Smithsonian Institution may have contributed to unbalanced media coverage that often leads desperate patients and their families to seek unproven stem cell treatments.

Gary Steinberg, in a scene from a video included with the Smithsonian Magazine story. The video did not discuss any of the potential risks or study limitations.

Among this year’s award winners was Gary Steinberg, M.D., chair of neurosurgery at Stanford University Medical School. A profile of Steinberg, A Neurosurgeon’s Remarkable Plan to Treat Stroke Victims with Stem Cells, ran this month in the magazine’s online science section.

The subhead reads: “Gary Steinberg defied convention when he began implanting living cells inside the brains of patients who had suffered from a stroke.”

While Steinberg’s experimental work has been lauded in the research community, his “plan” to treat stroke victims with stem cells doesn’t amount to a proven treatment. Readers of this story might not pick up on that point.

The story focuses mainly on one patient, Sonia Coontz, who suffered a debilitating stroke at age 31 but made a remarkable recovery after undergoing Steinberg’s experimental treatment in an early-stage clinical trial.

In the story, Steinberg calls her one of his “miracle patients.”

The article describes how after Steinberg drilled a hole in her head and injected stem cells, Coontz within hours regained the ability to raise her arm over her head:

“I just started crying,” she recalls. She tried her leg, and discovered she was able to lift and hold it up. “I felt like everything was dead: my arm my leg, my brain,” she says. “And I feel like it just woke up.”    

No proven therapies for stroke patients

There’s also no warning that this trial of just 18 patients wasn’t designed to prove the effectiveness of stem cell treatments for stroke, and that a large majority of stem cell trials don’t show a benefit.

This sort of premature gee-whiz coverage can raise expectations for stem cell treatments and drive patients to unregulated clinics that offer unproven and sometimes risky procedures, as HealthNewsReview.org has chronicled.

There are no proven therapies to restore brain cells that have died from a stroke, yet plenty of unscrupulous clinics offer what they say are simple and risk-free stem cell treatments for stroke patients. The hazards of such clinics was covered in a New York Times story, A cautionary tale of stem cell tourism. These types of clinics also are operating widely in the U.S., and you don’t need to be a tourist to find them, as we discussed in the blog post Strip mall stem cells.

Tim Caulfield, a law professor and research director of the Health Law Institute at the University of Alberta, said via email:

“Given the tremendous amount of hype surrounding stem cell research, researchers and the media need to be very careful how the science is represented. This is particularly so given the emergence of clinics marketing unproven therapies. A story like this can be used by clinics to push unproven therapies.”

Paul Knoepfler, PhD, a stem cell researcher at the University of California-Davis, said of numerous stem cell trials, most yield results that are “too preliminary to come to any conclusions.”

“Digging deeper and pointing out that there are many for-profit stem cell clinics selling the idea of stem cells for stroke and who engage in hype could have added another layer of nuance and context for readers that would have be useful too,” Knoepfler said via email.

‘We don’t know why she got better’

Feeding the hype is the word “miracle,” which is included in HealthNewsReview,org’s words you shouldn’t use in medical news.

“Calling his research participants ‘miracle patients’ will only fuel public expectations,” Caulfield said. He said “with this 31-year-old we don’t know why she got better, as I’m sure the researchers would acknowledge. … Perhaps, for her, this was the natural progression.”

Knoepfler said it doesn’t seem to make sense “that stem cells could noticeably help stroke patients with severe brain damage within hours or just a day of infusion. That sounds more like a placebo effect or some kind of unusual outcome that may not be seen more generally in a larger group of patients in a randomized controlled trial.”

What the article did well

Jeanne Loring, PhD, a professor at the Scripps Research Institute who has long criticized the proliferation of unregulated stem cell clinics, called Steinberg a “good scientist.”

“Any success is remarkable in this field,” Loring said. “There’s no other recourse for people with stroke.”

She lauds the article for acknowledging that Steinberg isn’t exactly sure why stem cells appeared to “jump-start” dormant circuits in the brain.

But she would have cautioned readers at the very top that sometimes what appear to be miracle cures aren’t.

“There’s a common problem, especially today, that they (readers) don’t read to the bottom of the page, and the bottom of the page is where the reality shows up,” she said.

A more robust study is needed to determine whether the treatment actually was effective, and to its credit, the Smithsonian story does mention that a larger study is planned.

But study limitations should have been mentioned

Still, Caulfield wishes the limitations of the initial study had been emphasized. Along with its small size, the study didn’t randomize patients to treatment or a placebo. It didn’t include a control group that didn’t get the treatment, and both patients and researchers were aware that the stem cell treatment was provided.

Smithsonian isn’t the first news outlet to cover this preliminary research, which was described in a 2016 Stanford news release that led to several news stories including one in Medical Daily that HealthNewsReview.org reviewed last year.

Neither Smithsonian nor Medical Daily warned that the study was inconclusive, even though Steinberg’s straightforward caution was right there in Stanford’s news release. “This was just a single trial, and a small one,” he’s quoted saying in the release. “It was designed primarily to test the procedure’s safety.”

Avoiding single-patient anecdotes, emphasizing study limitations, and steering clear of sensational language are among HealthNewsReview.org’s tips for journalists to combat stem cell hype.

This is one more reminder that every journalist writing about stem cell research — no matter what the context — should take a close look at those guideposts.