The following essay is by Steven Atlas, MD, MPH, one of our longest-tenured story reviewers and an Associate Professor of Medicine at Harvard Medical School. He reflects on a recent story that promised a “remarkable breakthrough” for multiple sclerosis, and why it’s important for HealthNewsReview.org to continue to criticize such stories.
As a practicing physician and a clinical researcher, I am all too aware of how few true “remarkable breakthroughs” and “miracle cures” there are for my patients, but also how much I am tempted to use “novel” and “innovative” when describing my research interests (especially to funding agencies). However, I still do an internal “here we go again” when patients bring out a copy of some news story about the latest and greatest treatment that’s never been tested outside of a petri dish. And it’s not limited to patients: I also cringe when politicians say they are going to cure cancer – most recently while watching the State of the Union speech.
As a reviewer for HealthNewsReview.org, I get a chance to think about the source of the material brought in by my patients and the articles and quotes generated by researchers. I’m always impressed when stories get it right – the complexity, the alternatives, the real risks and benefits. And I get to provide feedback when the journalist gets it wrong. As someone who gets negative reviews about my grant proposals, I know how harsh criticism can be. But the goal of this project isn’t to bash the news media or criticize for the sake of criticism — we’re always trying to educate. Just as I need to reflect upon a rejected research proposal or journal manuscript, journalists are hopefully scrutinizing our feedback so that they may do better on the story next time.
But what do we do about the sensational stories – is it really possible to help tone down the hype about the miracles? Do journalists and editors – and for that matter researchers and their funders – really want to be more circumspect? Cutting to the chase, my answer after doing this for a number of years is probably no. But we need to keep calling everyone out on it when it happens just the same.
My most recent case is a story from the U.S. edition of the Guardian that we reviewed a couple of weeks ago. The headline, “Cancer treatment offers MS patients hope after ‘remarkable’ trial results,” says it all. If I or a loved one had multiple sclerosis (MS), I’d definitely be contacting my physician with high hopes after reading this story. In my role as a physician and researcher, my first thought was, “How did I miss this new research study?” I read the major medical journal tables of contents every week – New England Journal of Medicine, JAMA, Lancet, BMJ, Annals of Internal Medicine — plus I get emails from other journals. It quickly became apparent that I hadn’t missed any new research publication, as there was no new study underpinning the story. Indeed, I had to go back a year to find a preliminary communication in JAMA that highlighted the treatment profiled — chemotherapy followed by hematopoietic stem cell transplantation. The last line of that communication read, “These preliminary findings from this uncontrolled study require confirmation in randomized trials.” The accompanying editorial highlighted a number of important issues that reinforced the need for more research before saying that we’ve got a cure.
The history of chemotherapy followed by hematopoietic stem cell transplantation as a potential treatment for MS even goes back further – as is mentioned in the Guardian story. Though the story also referred to a large, ongoing international study, it only provided testimonials from patients who had favorable responses to the treatment, the doctors who provided it, and an advocacy group that supports research into new MS treatments. There was no perspective from any patient who didn’t improve or from any doctor who didn’t have at least a peripheral vested interest in the research.
So what is new? It was hard for me to tell. Was there anything that would indicate that the preliminary results and cautions highlighted from over a year ago have changed? I couldn’t find any new scientific presentations, abstracts or publications.
For the patients, doctors, and groups advocating for chemotherapy followed by hematopoietic stem cell transplantation as a treatment for relapsing-remitting MS, one can ask what is the harm in reminding the public about this potential treatment. It is clear that this type of research takes many years to complete and even now we’re not sure of how it fits into our treatment armamentarium. One can even argue that the hype is needed to keep funders interested, especially when there are plenty of competitors for limited research dollars.
But what if these preliminary results and testimonials turn out to be wrong? Couldn’t the hype cause harm in that case? Let’s recall that hematopoietic stem cell transplantation doesn’t have such a benign history – it was advocated in the early 1990’s for treatment of metastatic breast cancer. There was a national outcry in the U.S. that health insurers weren’t covering it for financial reasons and were in effect killing women by saying that we needed to wait for evidence from large randomized studies. When the results finally came in, the treatment turned out to be no better than standard therapy and it slowly, but not immediately was dropped for other treatments.
One could argue that other than the much higher cost, this treatment didn’t make things worse since the prognosis for women with metastatic breast cancer was already poor. Indeed, it may have given hope to those with an incurable disease. But there are also examples where a potential breakthrough treatment did indeed made things worse. I think of anti-arrhythmic medications from the cardiology literature. I suspect that this drive for new groundbreaking treatments pushed both by the research community and those suffering from the disease makes it hard to remain objective and dispassionate – the hallmarks of the scientific endeavor.
So can I really fault the Guardian for pushing this next miracle cure? Maybe not if viewed from the position that they are just responding to a need for hope in the face of adversity. But newspapers aren’t in the business of providing hope to desperate people — or they shouldn’t be in any case. I read my newspaper looking for information to help me live my life and understand my world. What am I to do if the article I’m reading doesn’t have to be factual? That seems like a slippery slope to a place where people can’t trust the information they read even when the sources are reputable. That can’t be a good thing for anyone.
Bottom line – there is blame to go around. Patients and advocates need to be reminded of the important role for an objective scientific process. Funding agencies and research institutions need to keep a watchful eye on the hype generated by its investigators. Journalists need to remain skeptical of the motivations of the news releases and efforts of researchers promising the next cure. And yes, watchdogs such as HealthNewsReview.org need to call out when the story gets it wrong – even if there is plenty of blame to go around.