Recently, a hospital in Boston announced that a senior staff scientist had developed a “cure” for leukemia. I wasn’t surprised to read this – there are many clever and creative leukemia investigators in Boston, and promising new developments emerge from local labs on a regular basis. Were I a devoted follower of academic medical center press releases, though, I would have been puzzled that leukemia still needed to be cured. After all, just a few weeks earlier, a hospital in New York had reported the cure of leukemia, and, in the past year, centers in Texas, California, and Ohio had also described how their doctors had ended the scourge of this disease.
I vividly remember when a hospital in Pennsylvania cured leukemia so thoroughly and decisively in 2011 – “with the AIDS virus,” no less – that I spent the next couple weeks answering calls and emails from desperate patients with various forms of leukemia wondering how they, too, could be injected with HIV. Two especially heartbreaking calls came from the wives of two men with relapsed/refractory acute myeloid leukemia whom I had just enrolled on hospice care.
Even that excitement was nothing compared to the fervor in 1998, when a front-page article in The New York Times claimed that all forms of cancer were on the brink of being cured. In that article, Nobel laureate James Watson, PhD, promised that angiogenesis researcher Judah Folkman, MD, would cure the emperor of all maladies within two years, predicting that Dr. Folkman, “would be remembered along with scientists like Charles Darwin as someone who permanently altered civilization.” The Times’s use of more careful language – the article presented several more restrained opinions, and the headline even used the words “cautious” and “mice” – did nothing to avert breathless enthusiasm about the miracle of anti-angiogenesis therapy. Everyone wanted to get his or her hands on endostatin – even some healthy people, to avoid developing cancer.
In this era of alternative facts, scripted reality, and fake news, journalism is under closer scrutiny than ever before. For journalists working today, integrity and caution are now as critical as the traditional essential traits of courage and curiosity. Health journalism is no exception; getting it right in stories about advances in science and medicine is arguably more important for society than predicting which NFL draft picks will be a bust or describing the latest narcissistic Hollywood trend.
Some journalists are masters of their craft, but others are careless, lazy, or sloppy. It can be difficult for John Q. Public to tell who’s who or what’s what. Perhaps it’s not surprising that, in a recent Gallup poll, Americans ranked journalists’ ethical standards and honesty 12th out of 22 professions – just above lawyers and business executives, but below bankers and chiropractors.
Academic medical centers and disease foundations too often make health journalists’ jobs more difficult than they need to be. Although academic centers’ communications departments are well-meaning, their aim is as much to improve a center’s reputation (especially when prospective donors might read a report) as it is to inform. I work closely with my institution’s communications staff, and they are genuinely enthusiastic about the cool science being done here and the hospital’s mission to cure cancer and blood disorders But when press releases are capped by overpromising headlines, then transmitted across the planet on Twitter and anthologized on Reddit, any caveats or cautionary words in the original stories are inevitably lost in transmission.
Conflicts of interest probably get the most attention in discussions about the quality of health-care journalism, but journalists now commonly report studies’ funding sources. Incomplete information – especially failure to mention the adverse effects and cost of a new treatment, or that only animals or cell lines were tested – is just as harmful to a story as hyperbole, sweeping claims, and disease scaremongering.
There are some islands of self-policing in health journalism. For example, non-profit watchdogs such as the HealthNewsReview (healthnewsreview.org) scrutinize media reports and press releases about medical developments, grading them on a 10-point scale. These organizations are important checks on health journalism’s wild excesses, and they deserve support.
We try to be balanced in what we report at ASH Clinical News. I’m sure we fumble from time to time, but we routinely note conflicts of interest and the limitations of studies. Also, most of the stories you’ll find here are about clinical studies. Preclinical work is important; at the end of the day, though, human data are what matter most to practicing nurses and doctors, and to our patients.
The danger is that patients and others learn to tune out and miss stories about real advances, like villagers ignoring boys crying wolf. I was recently reminded of this by one of my patients, a middle-aged man who has chronic-phase chronic myeloid leukemia. He’s a smart fellow – a senior judge in local court. We’ve happily charted his evolving remission, as imatinib induced first an early molecular response, then a complete cytogenetic response, and finally a major molecular response (MMR). When he achieved MMR, I told him his life expectancy was similar to someone of the same age without leukemia. He stared at the corner of the room with a look of wonder in his eyes. “Wow, so there really have been improvements in treating cancer. How about that! I thought it was all hype, just smoke and mirrors that you guys publicize to try to get more research funding.”
I pled “not guilty,” but the evidence was stacked against me.