Burt’s research tested individuals in the early stages of relapsing-remitting MS. Scientists removed stem cells from the patient’s blood or bone marrow, used chemotherapy to destroy his or her immune system, and then infused the stored stem cells back into the person in an attempt to “reboot” the system. The hope was that the new immune cells would break the MS cycle and no longer attack the central nervous system. After thirty-seven months, all of Burt’s patients were free from progression (their disease had not grown worse) and sixteen were free of relapses (recurring symptoms). Furthermore— getting to the point about “reversal”—nearly 81 percent saw at least a one-point improvement on the Kurtzke expanded disability status scale.
One article that got all of this right and accurately characterized the significance of Burt’s research was a piece published online at Nature News. Not only did the reporter, Monya Baker, use cautionary terms like “preliminary study” and “new trial,” she sought outside opinion by interviewing the vice president for biomedical research at the National MS Society in New York, who cautioned that “Although they are impressive results, it’s a preliminary study,” and the director of another MS research center at the University of Maryland who stressed how promising the results were, but cautioned that larger studies were needed.
Furthermore, Baker did something that all others failed to do. She questioned the treatment’s expected fatality risk—which, according to Burt, is roughly 1 percent—by comparing it with the withdrawn MS drug Tysabri, which has a 1 in 1000 chance of causing a serious viral infection. “Those risks were considered so serious that [Tysabri] was initially withdrawn from sale by the manufacturer,” the article stated. “It is now only prescribed under a special prescription programme in the United States and carries serious warnings in Europe.” To support this point, Bayer quoted a commentary by an Italian researcher published in the same edition of Lancet Neurology as Burt’s study, which argued that “Burt’s therapy cannot be considered gentle, because there are certainly side effects of some importance.”
Indeed, the limitations of Burt’s study were such that some journalists didn’t bother. Robert Bazell, NBC News’s chief science and health correspondent, said he decided not to cover the results after reading the press release and journal article. “The reason was the relatively small number of patients and the author’s upfront acknowledgement of the need for a controlled study to prove the outcome,” he wrote in an e-mail. “In its favor, I know these scientists and respect them, but I believe this study falls into the category of a report that should be encouraging others to continue the work … as a TV presentation [it] would do nothing but offer false hope.”
Still, Bazell does not fault other journalists for covering Burt’s research, noting, “There are no hard and fast rules we follow about these things.” Done with caution and a critical eye, coverage of limited but promising research can provide a needed dose of optimism for people with MS and their families. Unfortunately, in this case, that journalistic prudence was almost totally missing.