This story explores the controversy surrounding a new surgical procedure, similar to balloon angioplasty for blocked coronary arteries, that purportedly treats multiple sclerosis. The story’s emphasis on skeptical perspectives is appropriate for a treatment that hasn’t been rigorously studied and whose biological basis remains questionable. And in a story where it would have been all too easy to profile someone with a “miracle” recovery following the procedure, the writer defies convention and focuses on the disappointed patient who didn’t derive the expected benefit.
For all its appropriate caution, the story lacks the exploration of evidence that we feel is the core of any good health story. It talks a lot about conflicting studies and quotes various expert opinions, but it never provides a run down of what kinds of studies have been performed and what they’ve found so far. This kind of information is critical for informed decision-making about treatments.
Multiple sclerosis is a condition that rightly instills fear in patients who have been diagnosed with it. Despite this fear, for many the course of MS is slow and not associated with significant impairment. However, for some it is a relapsing and remitting condition that inexorably progresses to disability. Though there are FDA approved treatments for MS, the treatments have modest benefit and real side effects. Thus, any new treatment that offers a cure or can slow down or reverse the course would be of tremendous interest to those affected. The problem is that in the desperate search for a cure, patients, family and providers can seek out risky and expensive treatments that haven’t been adequately studied.
The story mentions that some patients have flown to Europe and spent their life savings on the procedure, and an expert calls the procedure “costly to patients.” So we can probably assume that the procedure is unlikely to be covered by major insurers or Medicare (who would cover those with chronic disability), and that the costs will run into the tens of thousands of dollars or more. This is important information for the typical patient who isn’t wealthy enough to carry this kind of cost burden. The story could have been more explicit about all of this and provided more specifics about the financial aspects of the procedure. However, we think the main point to convey here is that the surgery is expensive and patients will have to pay their own way. The story does this — though barely — so we’ll award a satisfactory.
We should start here by recognizing this story’s unusual choice of patient to profile in the opening paragraphs. The convention with a “miracle” treatment like this is to lead with a patient who experienced a dramatic benefit which is often unrepresentative of typical results. In this case, though, the story primes us to expect something miraculous and then delivers the mundane truth: “it didn’t work.” We wish more stories focused on patients who represent the complicated reality of health care instead of pumping up best case scenarios.
With that being said, we feel the story should have done more to describe the range of outcomes that have been reported with this procedure as well as the need for better studies. For example, it didn’t take our reviewers long to identify preliminary case series data that could have been cited. Though uncontrolled studies like this one are prone to bias that can lead to inflated estimates of benefits, we think these published results — if carefully and responsibly explained — could have helped readers better understand the excitement surrounding the treatment. Alternately, the story could have sought out the perspective of doctors who have performed the procedure to get their take. As it stands, the coverage is dominated by the perspectives of a single unsuccessfully treated patient and a skeptical researcher, so it’s difficult for readers to grasp why there has been such a heated public debate about the surgery.
The story mentions life-threatening blood clots are a risk of the procedure, and notes that people have died from the surgery. It also quotes an expert who calls the procedure “unsafe.” It would have been nice to have some statistics on adverse effects to help readers weigh these risks for themselves, but it may be too early in the game to expect this kind of systematic data. At this point in the development of an experimental treatment, the priority for a story like this is to make sure potential harms are given adequate emphasis — something this story accomplished handily.
This story cites conflicting studies about whether vein blockages play any role in MS, and it allows one researcher to confidently proclaim that these problems are “not the cause of MS.” However, the story never discusses any actual data or tells us how this researcher arrived at his conclusions. The story does note that differences in technical training between investigative groups may explain the discrepancies observed in different studies, but what about the other criteria upon which scientific evidence is supposed to be judged — i.e. the type of study (observational or intervention), number of patients, blinding, use of control groups, size of the effects observed, etc.? These factors should have been addressed more explicitly to establish the basis for competing points of view.
A second and arguably more important question is whether treating vein blockages actually improves symptoms in patients with MS. Again, the story sets a skeptical tone but doesn’t justify it with a discussion of evidence (or lack of evidence).
Although there was no overt disease-mongering, the story focuses exclusively on the story of a patient who had an aggressive case of the disease. MS can manifest itself in a variety of different ways, and his experience is not representative of patients with mild and slowly progressing MS. Also, not everyone with MS has the vascular abnormalities discussed in this story, and so would presumably not benefit from this procedure. Finally, the story should have explained that MS is a condition characterized by flare-ups that often get better by themselves, so it’s hard to tell if “miraculous” recoveries are attributable to the surgery or are just the natural course of the disease for these patients. A bit more context on these issues would have been helpful, but we don’t think the story deserved to be flagged for not including it.
The story quotes two experts who are involved in studies of vein abnormalities and potential links to MS, and their perspectives are a valuable addition to the story. However, both of these researchers (Dr. Robert Fox and Dr. Robert Zivadinov) have reported relationships with companies that make drugs to treat MS. To avoid the appearance of any conflict, the story should have alerted readers to these relationships.
The study focuses exclusively on this novel surgical procedure. It should have at least mentioned that there are FDA-approved drug treatments for MS.
The article implies that there aren’t yet a lot of doctors performing this procedure, but it isn’t clear. Early in the story we learn of a patient who recently had the procedure performed in New York, but later on the story says that Canadians and Americans are going to Europe to have the surgery. Are there not enough doctors in North America who are trained to perform this procedure? Or are there regulatory, legal, or financial issues that are preventing patients in North America from getting it done here? The story should have told us.
The story tells us that the idea behind the procedure was first proposed in 2008, making the concept quite novel. It noted that despite the catchy name, the “liberation procedure” is actually very similar to balloon angioplasty performed regularly on coronary arteries.
The story is clearly not based on a news release.
Systematic, Criteria-Driven
Monday at #ADA2021, an infectious disease epidemiologist, a journalist, and a researcher shared perspectives on communication of risk in the era of COVID-19: http://ow.ly/ROfR30rMeE7 @AstleyCM @garyschwitzer @berthahidalgo @ADA_DiabetesPro
Shoutouts to @susan_bewley @drkevinknopf @MichaelBaum11 in this call for more than fawning coverage from press releases for these kinds of stories.
Also, linked history inside goes back 5 years just on Grail apparently trying to become Holy Grail. https://twitter.com/garyschwitzer/status/1408849696416841731
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