By Dr. T. Jock Murray and Janet Murray
For The Advocate
It seems like every week we read of another exciting “breakthrough” in medicine. Along with the announcement of the “breakthrough” comes the hope that this one will lead to changes in treatment and will bring great benefits to so many sufferers… even a cure. Surprisingly, in most cases we never hear about the “breakthrough” again.
The fate of breakthroughs
Why is this? Often, further studies do not confirm the results, or it wasn’t as monumental as the story suggested. In a French study of 199 media covered stories about medical research on topics such as autism, depression, Alzheimer’s disease, breast cancer and glaucoma, only half were confirmed in further studies. And when later research refutes the original study, the media rarely report it. The “breakthrough” story is a big one. The “Oops, sorry” story isn’t. Another study identified 101 “breakthrough” new drugs, but a follow-up study years later revealed that only five had come to market, and only one was in common use (ace inhibitor for hypertension). Another study showed that in recent years over 200 cancer “breakthroughs” have failed.
Science works by incremental steps, not “Eureka!”
The idea of breakthroughs conjures up the image of a 1950 movie with Henry Fonda staggering out of his basement laboratory with a smoking test-tube, yelling, “Eureka! I have found the cure!” Science and medicine rarely advance by such a sudden breakthrough by an individual. Science usually works by slow incremental steps, testing hypotheses, advancing in positive areas, and learning from the failures. Discoveries usually come after years of careful steps, and by different groups working, often in different countries, but communicating and collaborating. It doesn’t make for an exciting story, but it has been responsible for amazing advances in medicine and science in the last century.
Breakthrough stories lack followup
Breakthrough stories follow a pattern. This “breakthrough” could change how heart disease is treated, or this test may revolutionize the diagnosis of mental illness, or this surgery may change the lives of so many sufferers. These articles often open with a hopeful suffering patient to personalize the story. The idea of a breakthrough captures the reader, expands the imagination, and raises hopes in those with illness. Even though it may have encouraged hopeful patients to seek the new advance, the media doesn’t feel they have a responsibility to complete the story when it doesn’t pan out.
In the French report mentioned above, they gave an example of a study that suggested a genetic variant linked to depression when a person with the variant was exposed to stressful events. The story was reported in 50 newspapers, but when 11 later studies showed this to be wrong, not one of those newspapers reported the negative results, leaving the public still believing the original story. Even when a meta-analysis of these studies was published in the New England Journal of Medicine, only four newspapers covered that story, and some of the other newspapers still carried comments on the original discredited study.
Does it matter?
Sometimes “breakthrough” stories do harm. Let’s look at two examples, the stories of the research of Dr. Andrew Wakefield and Dr. Paoli Zamboni.
There was great attention to the Dr. Andrew Wakefield’s discredited research suggesting a link of autism to MMR vaccination. Although the research was discredited and his licence to practice medicine was removed because of “an elaborate fraud”, it caused a decrease in vaccination rates in Great Britain and the United States, with increases in measles and mumps, and resulting serious illness and some deaths. Anti-vaccination zealots still use his discredited research to discourage vaccination.
On November 21, 2009, CTV’s Avis Favro dramatically described “the Liberation Therapy,” a miracle-like treatment for multiple sclerosis reported by Dr. Zamboni of Italy, with videos of his wife and some other patients walking after they had veins unblocked in their neck. Favro urged viewers to put pressure on the MS Society and MS clinics to provide funding and make the therapy available. Newspapers, TV and radio across the country talked about the exciting breakthrough. Neurologists who criticized the small uncontrolled study and the implausible theory were portrayed as blocking a new treatment because they were in the pockets of big pharma. Some neurologists were threatened. In the meantime, patients were having fundraisers and were flying to Poland, Mexico, Costa Rica, Bulgaria, and India, where clinics were set up to provide the procedure at a cost of $8,000 to $20,000. A study of media coverage showed there were more stories about this breakthrough in Canada than in any other country.
I was interviewed (TJM) over 60 times over the Zamboni study and when I asked the interviewers if they had read Dr. Zamboni’s paper, not one had. Had they read the paper they would have seen that Zamboni reported that only mild cases seemed improved but progressive patients did not have any benefit. Sadly, it was almost always progressive patients with disability that were flying to centers for the procedure. There was almost no coverage to the the subsequent negative studies that showed patients were not improved, and experience that called into question the theory, the test and the procedure. The breakthrough was not a breakthrough, but the media were still writing human interest stories about disabled MS patients who were raising funds to go away for “Liberation therapy”.
Who was hurt by all of this? The MS Society was pressured to spend millions on studies, diverting funds, researchers and patients from other research for some years. The relationships between the MS society, patients and neurologists were strained. Eventually even Zamboni said the therapy is ineffective and should not be used on MS patients. Even though almost every TV, radio station, and newspaper had carried excited stories of the Liberation Therapy for MS, it is difficult to find any that have followed up the story of the failure, the hopes dashed, the money wasted, the relationships damaged, the patients who were harmed (two Canadians died after the procedure) and the years spent on a flawed theory and study.
Why does this keep happening?
Patients, media and clinical scientists all play a part in breakthrough stories. Patients and their families are naturally interested in any announcement of a breakthrough in their area of concern. Physicians and scientists want to see their research as helpful and making a contribution in the future, so encourage any attention that validates their work. Reporters are often unable to assess the science, so will start the story with a hopeful patient, and overplay the relevance of the research by expressions such as “could lead to …” or, “might change the way patients are treated.”
But how can you as a reader understand and assess these breakthrough reports as legitimate and truly hopeful? In the next column we will explain some aspects of clinical studies that may help in assessing reports of medical advances.
Dr. T. Jock Murray is a graduate of Pictou Academy and former Dean of Medicine at Dalhousie University. Janet Murray is a graduate of Mount Saint Vincent, majoring in philosophy and a diploma in journalism. She is former Chair of the Board of Governors of Mount Saint Vincent University.