The story focuses on a recent journal article that reports stem cell transplants appear to halt the progression of multiple sclerosis (MS) in some patients — but that the treatment can also be fatal.
It does a good job highlighting the potential harms associated with the treatment and the ethical quandary of a potentially fatal treatment for a nonfatal disease. But it would have been stronger if it had made it clearer that this was not an experimental trial–instead it was a data analysis looking at detailed medical records from people who had received stem cell transplants in the past. While this is still a useful type of study, it has more limitations, which should have been noted.
MS can have a profoundly adverse impact on the quality of life for those affected. And the numbers here aren’t small. Approximately 400,000 people are estimated to have MS in the United States, with estimates around the world reaching into the millions. Symptoms range from blurred vision and speech problems to pain and paralysis. It is easy to see why MS patients and their loved ones may be eager to grab onto news about promising treatment options.
And that is precisely why it is important to ensure that promising findings are coupled with information about the limitations of those findings and their potential costs — both in terms of possible adverse health outcomes and financial burden.
Costs aren’t discussed. And that’s particularly problematic, given the potential costs associated with stem cell treatment. While we’re not aware of any clinically-available stem cell treatments for MS, we can get a rough idea of costs from the stem cell treatments currently available for treating some cancers — and those costs can reach into the hundreds of thousands of dollars.
One benefit here is progression-free survival. This is basically a yes/no question: did the patient’s MS progress? For 46% of the 239 patients who could be analyzed, the answer was yes. The story tells readers that. It also tells readers that a certain subset of patients was more likely to experience these benefits than others: “younger patients with a relapsing form of MS who were not severely disabled and who hadn’t found relief with other treatments fared better than others over five years.”
However, the story didn’t convey important context for this progression-free survival figure. The reason that the 46% figure is interesting is because of this: Conventional wisdom says patients with aggressive disease would still continue to accumulate disability even if their inflammation is stopped, yet among the group studied among which 75% had progressive disease, 46% had not progressed at the 5-year mark. This means that some patients with progressive disease benefited from stem cell treatment–against conventional wisdom.
As we explain below in our evidence quality criterion, the story should have made it clearer that these findings were not obtained via a randomized controlled trial.
The story focuses on one potential adverse outcome: death. The story addresses this using clear, unambiguous language, which is good. In addition, the story notes: “Those deaths are a major concern, one neurologist said, because MS is not in itself life-threatening.” That’s a key point to make. The story could have been stronger if it had addressed the potential for other, nonfatal outcomes, but we give it a satisfactory rating.
The story does a poor job explaining that this was a retrospective study, not a clinical trial. A reader is likely to be misled into thinking that this was a study that recruited 281 patients, gave them stem cell treatments, and then followed them for a long time. This was not what happened–instead they just looked at medical records from those with MS who had received stem cell treatment, which has many more limitations.
As the study itself explains, “In a retrospective study, incomplete reporting and loss to follow-up may result in underestimating the frequency of late adverse event.”
No disease mongering. The story addresses MS, its prevalence and its symptoms.
The story includes input from one independent source (who highlighted the ethical concerns regarding treatment-related deaths for a nonfatal disease). He does not appear to have any relevant conflicts of interest.
The story notes that “A trial that compares stem cell transplants with other therapies to see whether stem cell transplants can become a treatment for patients who have progressive MS is about to start.” The story also notes that “Medications can slow the progression of MS and help patients manage symptoms, but there’s no cure.”
The story does not explain if stem cell transplants are currently available to MS patients. The National MS Society states they are not FDA approved, and are considered experimental.
Researchers have been publishing papers about this type of stem cell transplant for at least 20 years. The story would have been much stronger if it had placed these recent findings in the context of the broader field of stem cell treatment for MS.
The story appears to go beyond any news releases we were able to find regarding the paper.