Hard to tell if these headlines are using fear-mongering as clickbait, or simply riding the latest wave of stories reporting on the escalating suicide rates in the U.S.:
Study: Adults Use Medications That Can Lead to Depression and Suicide (US News & World Report)
Regardless, they’re misguided, misleading, and not supported by a study published earlier this week in JAMA . Here’s why:
- This was an observational study that cannot prove such cause-and-effect as the headlines imply.
- The study couldn’t control for other potentially significant contributors such as a pre-existing mental illness and substance abuse.
- The study can’t rule out an alternate hypothesis, which is that people taking medication are more likely to have other health problems that can lead to depression.
This study looked at prescription drugs that list depression and suicidal thinking as side effects, to see if their use was, indeed, associated with more depressive symptoms.
It could only suggest associations, and the key findings of the study are already well known to many healthcare providers:
- There are hundreds of currently prescribed medicines that list depressive symptoms or suicidal thinking as side effects.
- The most notorious are beta blockers (for blood pressure), proton pump inhibitors (for acid reflux), female hormones, anti-seizure medications, and narcotics.
- The more of these medications a patient was taking, the more likely they were to self-report feelings of depression.
This latter point is key and was highlighted as a “take-home message” by the lead author in this news release.
Polypharmacy can lead to depressive symptoms … patients and health care providers need to be aware of the risk of depression that comes with all kinds of common prescription drugs, many of which are available over-the-counter … many may be surprised to learn that their medications — despite having nothing to do with mood or anxiety or any other condition normally associated with depression — can increase their risk of experiencing depressive symptoms.
This is a question that’s rarely posed in news coverage of research on mood disorders. Reporting on this study was no exception. Not a single article I came across challenged the questionnaire used in this study: the Patient Health Questionnaire 9 (PHQ-9).
Here is that questionnaire:
To qualify as depressed in this study a score of 10 or more was needed. That’s right on the cusp of mild-to-moderate depression.
But there are some important things to bear in mind.
First, this is self-reported by patients. And that’s notoriously difficult to replicate. Furthermore, a recent study suggests that psychiatric studies which rely upon such questionnaires tend to OVERestimate the prevalence; most likely because the questionnaires set a very low (ie. overinclusive) bar, and patients have difficulty recalling the duration and severity of their symptoms.
Second, the tool is designed to screen for depression, NOT diagnose it. (A positive result is intended to flag people who require follow-up from a clinician to confirm the diagnosis.) And it’s certainly not designed to predict (or diagnose) the potential for suicide. So headlines like the one featured in Quartz are hyperbolic to say the least.
Finally, the questionnaire was designed in the late 90s with a grant from Pfizer which, at the time, was marketing one of the best-selling anti-depressants in history: sertraline (Zoloft®). Ask yourself: would they benefit more from setting a low or high bar for depression?A psychiatrist’s take
All this irks Allen Frances, MD, a former chairman of psychiatry at Duke University, who also chaired the task force charged with revising the 4th edition of the Diagnostic and Statistical Manual (DSM-IV) – the standardized criteria used by many mental health care providers in making diagnoses.
“The uncritical use of these self-report questionnaires is responsible for much of the inaccurate diagnosis of mental disorders that’s so ubiquitous in clinical practice and epidemiological studies. Self-reports are inherently biased to exaggerate rates of disorder because they can’t accurately assess the severity, duration, and clinical significance of symptoms. They can only serve as screeners. Careful clinical evaluation is still needed; it’s an imperfect, but necessary check, on the over-diagnosis caused by these questionnaires.”Advice for journalists
Many reporters made it clear that this study could not establish cause and effect. And some even included the pragmatic take-home message about polypharmacy (ie. taking multiple drugs concurrently) stressed by the lead author. That’s an important service to readers.
But most outlets did not show the same care with their headlines, which abandoned all nuance in favor of high impact framing. For example USA Today’s take — “One-third of adults in US taking drugs that may cause depression, study finds” — did not include any cautions or caveats about the study or its conclusions.
Their coverage (along with that of many other outlets) highlights an important weakness that is widespread in reporting on mental illness, and one we’d all benefit from addressing. That is, let’s show our readers how various mental illnesses are defined in the studies we’re covering. What are the criteria? How are they measured? And what are their limitations?
That so many of us are interested in stories about depression and suicide is completely understandable. That so many journalists too frequently overlook how researchers define depression is completely avoidable.Getty Images
Most journalists who cover health or education struggle to obtain government records and data that are vital to our stories and have compelling public interest. While some agencies are reasonably accommodating, others exploit every loophole or gray area in the law to deny public records requests.Article type: ScienceWriters magazineArticle topic: Science writing news
A new study confirms something we here at HealthNewsReview.org have been emphasizing for many years: Health news stories often overstate the evidence from a new study, inaccurately claiming that one thing causes another — as in drinking alcohol might help you live longer, facial exercises may keep your cheeks perky, and that diet soda might be a direct line to dementia.
The researchers looked at the 50 “most-shared academic articles and media articles covering them” in 2015, according to data from the NewsWhip database. Seven of the 50 studies were randomized controlled trials, the gold standard for “causal inference” in medicine (meaning, one can reasonably infer that an intervention caused an outcome, but not always).
The rest were observational studies, which is what it sounds like: Observing people and then seeing what happens to them (or what happened to them, if it’s looking at data collected in the past). They are not true experiments, with a control and placebo group. Sometimes, with lots of observational data–after longterm, repeated findings in thousands of people from different studies that used terrific methodology– the evidence becomes so strong that it can make sense to change public health or medical practice based on only observational data. Smoking and lung cancer is one such case. But it’s also clear that the literature has become littered with poorly done observational studies that make causal claims that cannot be supported.
They found a “large disparity” between what was written in the news stories compared to what the research showed:
- “44% of the media articles used causal language that was stronger than the academic articles” (and many of those studies were overstated to start with).
- “58% of the media articles contained at least one substantial inaccuracy about the study.”
One way that news stories can overreach is by inaccurately using language that implies x caused y:
- “may be caused by”
- “seems to result in”
- “is caused by”
- “is due to”
In many cases, the language needed to be dialed back to better describe the research. For help on learning how to do this, see:
- Observational studies: Does the language fit the evidence? Association vs. causation
- 5 tips for writing better health news headlines
Lead study author Noah Haber, a postdoctoral researcher at the University of North Carolina Chapel Hill, said he’s always been interested in how research may or may not determine that a health exposure leads to an outcome, which he calls “causal inference.”
At the same time, he noticed that many of his friends were sharing health news articles on Facebook and Twitter that didn’t accurately describe the research (as in “new study shows drinking red wine seems to result in people living longer”).
“This study takes that process and takes it to research-driven extremes, where we’re looking at what is being shared across all of the Internet in 2015,” he explained.Aligns closely with our own reviews of news stories
Among the popular stories in 2015, some usual suspects made the list: diet, coffee/caffeine, pregnancy/childbirth, green space, medical devices/treatments, pets, and air pollution were toward the top. Some interesting outliers included the impact of horror movies, birth order, and weekend hospital admissions. These were linked to a wide range of outcomes on things like mood/mental health, cardiovascular disease, IQ, mortality and BMI (and many others). All of the data can be seen here.
Well-known institutions and journals were often the sources. For example, studies from Harvard University were covered in 18% of the news stories. The stories that were shared most often were produced by outlets we review regularly, including CBS News, the New York Times, The Guardian, Los Angeles Times and NPR.
That 58% of the stories inaccurately reported the evidence closely matches our own number of 61% for the more than 2,500 news stories we’ve reviewed and assessed on our evidence quality criterion.Where does the misinformation start?
Haber emphasized that the study didn’t conclusively pinpoint who’s to blame for the misinformation. The published studies themselves slightly overstated the evidence, for example. And, as we’ve learned from reviewing news releases, publicity is often a common source of misinformation. Haber’s work didn’t look at news releases, though he hopes to investigate that in the future.
Ideally, well-trained journalists should scrutinize the news releases and the original research to look for problems that might produce misleading assumptions. That is the role of the journalist, after all.
All of this matters, he said, because people may make health decisions based on the misinformation they’ve read, a problem we are currently exploring in our series, Patient Harms from Misleading Media.
The media attention lavished on these topics also may have other unintended consequences. For example, it may encourage more researchers to study issues that they see grabbing headlines in major news outlets — since those questions may be viewed as having greater public importance and greater potential to advance careers.
“It also crowds out a lot of the good science information and changes the landscape of what people are producing,” Haber said. “There’s a feedback loop in these things.”
Unexpected pleasure on tasting an obscure Middle Eastern wine found in his Amman, Jordan, hotel minibar sparked Kevin Begos’ ten-year odyssey to explore wine’s history. In Tasting the Past: The Science of Flavor & the Search for the Origins of Wine, Begos shares his findings from archeological digs to contemporary efforts to decode the DNA of wine grapes and save some grapes from extinction.Member blog name: Advance copy: Backstories on books by NASW membersArticle topic: Science writing news
Editors’ note: We are saddened by the recent suicides of Kate Spade and Anthony Bourdain. This Storygram was written and readied for publication before their deaths, and we feel that the best way to honor them, as well as the scores of not-famous people impacted by suicide and mental illness, is to publish. The more people who read and think about the important issues raised in Barry-Jester’s piece, the better. For more information on reporting on suicide, read this.
The Storygram series, in which professional writers annotate award-winning stories to illuminate what makes a great science story great, is a joint project of The Open Notebook and the Council for the Advancement of Science Writing. It is supported by a grant from the Gordon and Betty Moore Foundation.
Anna Maria Barry-Jester is on the staff of the data-driven news site FiveThirtyEight where she covers public health, immigration, food, and science. This annotation was done by David Wolman and is co-published at The Open Notebook.
Kenny Michelena is, by just about any measure, a tough guy.This opener is no barnburner, but it’s elegant nonetheless. Good stories are about people, and right away the reader gets to meet one. It’s also quick, conversational, and not showy. Kudos. He was born and raised on a ranch in rural northwestern Wyoming and remembers that after class in elementary school, the bus driver would drop him off wherever he saw the family tractor, so he could go straight to work in the fields. He worked just about every day of his life from the age of 8, first lambing sheep and plowing fields, later helping run the farm. In his 30s, when the ranch became unprofitable in a shifting economy, he drove trucks packed with cattle and other animals across the country, backbreaking labor that put him on the road for weeks on end.High marks for tempo and, again, not showy. What do I mean by tempo? The writing has a breezy feel. The reader can move quickly through it, not because skim-able prose is the goal, but because accessible prose is the goal. Tempo has another meaning for a story like this one, which we’ll get to in a moment.
Then, several years ago, the pain started. It began in his shoulder, but it quickly took over his whole body, preventing him from working. There were days when he could hardly get off the couch. “I was raised where your pride, your reason for being alive was work,” Kenny said.The reporting for this piece yielded a lot of great quotes that are deployed effectively to provide feeling or encapsulate a big idea. Quotes used to serve up information that should have been paraphrased are a great way to lose readers.Kenny Michelena plays fetch with his dog Ellie (left). Kenny in his home in Greybull, Wyoming (right). Originally published at FiveThirtyEight.
He went to several doctors, and none could find anything wrong with him. He remembers one telling him he was just an overweight truck driver looking to collect disability.
It wasn’t until early in 2014, when he consulted a physician assistant in a nearby town, that he started to get some answers. The physician assistant said she’d do the X-ray, but she also wanted to draw blood. Test results showed that he had hemochromotosis, a genetic condition that causes excess buildup of iron in the body, which can lead to liver and heart failure, among many other life-threatening concerns, if left untreated.NATIONAL ACADEMIES KECK FUTURES INITIATIVE COMMUNICATION AWARD The Keck awards promote effective communication in science, engineering, medicine and any interdisciplinary work within and beyond the scientific community. This story won in the online category in 2017.
“Maybe in a bigger town, or with more doctors, that wouldn’t have gotten so bad,” Kenny, now 58, said recently from a reclining chair in his living room, looking out through the kitchen to the fields and mountains in the distance.
The diagnosis brought Kenny some solace, but the searing pain remained. It was just one of the many problems swimming around in his head, pulling him deep inside himself that summer. The aching wouldn’t let him sleep or work, so his schoolteacher wife, Lisa, was supporting them. And there was the family ranch that he and his brother had different ideas about how to manage but could both agree probably wouldn’t turn a profit again. He began to worry about money. He thought, as he sometimes had since he was a teenager, about using one of the dozen of guns he keeps at home to end his life.The best journalism instruction I ever heard was this: Just tell what happened. Easier said than done, but when you have the material, as Barry-Jester does here, this mantra can get you far.
One of his two daughters, the one still living at home, got married and moved away. He knew that would hurt emotionally, but it was worse than he had anticipated. “Nobody wants to see their kids go, but I’d been dreading it since the day they were born,” Kenny said. He made it through her wedding and then brought his other daughter’s beloved animals to the state fair a few weeks later — the sisters had been state champions a few times; he didn’t want to disappoint them. “I held up long enough to get those two things done, and then I just let go,” Kenny said.Small scenes can paint vivid pictures. The reporting likely yielded other examples of Kenny’s emotional descent, but this one is gutting. Again, smart use of material blended with powerful quotes.
He woke up early one morning in August to do a day’s work for the local agriculture cooperative, but he never made it.This is a bit clunky and could have used some smoothing over. That is an opinion, of course, but read the sentence aloud. See what I mean? Kenny told Lisa that he loved her, but he thought they’d be better off without him; he couldn’t take the agony anymore and wanted to end his life. Lisa called a crisis hotline, and then put Kenny in the car and drove him three hours from their rural home to the hospital in Billings, Montana.The entrance to the Michelena ranch in Greybull, Wyoming (left). Kenny climbs into the cab of his truck to warm up the engine (right). Originally published at FiveThirtyEight.
As a middle-age white man living in the mountains of the Western United States, Kenny is among the demographic of Americans most at risk for suicide in the country. With a suicide rate of 44 per 100,000, men in this age and geographical group have more than three times the risk of dying by suicide than the national average. In Wyoming, approximately 80 percent of suicides are men; a quarter are men ages 45-64.And here’s the nut, or most of it. It’s the figures that so many FiveThirtyEight stories are built on; numbers that, upon scrutiny, reveal that we don’t know the world as well as we think we do. That kind of premise can make for gripping writing, provided real people have substantial presence in the piece.Originally published at FiveThirtyEight.
Though firearmsThis really worked for me. The nut above, focused on suicide, sets up an interesting story all by itself. Yet by holding the firearms connection until the next paragraph, the writer is saying: But wait. There’s more. are the third-most common method for attempting suicide, they are responsible for the largest share of suicide deaths because they are so lethal. Nationally, nearly two-thirds of all deaths by firearm are due to suicide, and Wyoming has had the highest rate of suicide by firearm of any state over the last 15 years. Studies have linked higher rates of gun ownership with increased risk of suicide death, but in Wyoming, which also has one of the highest rates of gun ownership in the country, this is an unpopular topic. As Tom Morton of the Casper Star-Tribune put it in a series of articles about Wyoming’s suicide epidemic, guns and suicide are the “third rail of Wyoming culture.”A clever structural move starts here, one that enables still more twists. This paragraph is about guns as a method of suicide. The reader is about to find out, however, that the connection between guns and suicide is nuanced. Instead of just saying that, though, Barry-Jester unspools the ideas in such a way that the impact of each twist is felt, not force-fed. You’ll see what I mean a few paragraphs down, where I’ve added the label “Guns Tease No. 2”
The high suicide rate isn’t news in Wyoming. “It’s certainly not going down this year. There’s a ton of concern, and nobody has any good answers,” said Mark Russler, the executive director of Yellowstone Behavioral Health Center, a community mental health program in Cody. Russler is responsible for much of the community mental health work in northwestern Wyoming. Despite more than a decade of concerted efforts to reduce the suicide rate, it continues to rise in the Mountain West. But that’s true all over the country — in every region, among every age group under 75, and among nearly every racial and ethnic group.This is a smart editorial play. Get the experts to establish what is essentially a mystery to solve, or at least explore, and you up the chances that readers will stick with you. This passage also makes it harder to dismiss the suicide issue in Wyoming and the West as not relevant to the life of a reader in Chicago, Orlando, or rural New Hampshire.
Local culture is a common explanation for the high rate in the West. In Wyoming, people call it the “cowboy-up” mentality — the get-your-shit-together, pull yourself up by your bootstraps, can-do attitude that they say is bred into children from a young age. That self-reliance helps people thrive in a landscape that’s big and tough, said Russler, but can also put them at risk if they get into a personal crisis.
Comparing health statistics in Wyoming to those from states in other parts of the country can be difficult because the population is so tiny (people describe the state as “a small town with a long main street”). But the trend in the Mountain West as a whole is clear, according to Carolyn Pepper, a professor of psychology at the University of Wyoming. She recently took a sabbatical to study why suicide is so common in the Western mountain ranges; using data from the Centers for Disease Control and Prevention’s Multiple Cause of Death database, she calculated just how bad the problem is and what might be causing it.1 Suicide rates have been higher here than in other regions for nearly a century, and while the rates are highest for middle-age white men, they are elevated for all sexes, races and ethnicities, especially American Indians, compared to their counterparts in other parts of the country.
“I kept hearing, as I talked to people out here, that it’s all about white men in rural areas, middle-age white men. And it’s true that, statistically, that’s the group most likely to commit suicide,” Pepper said. “But when you start looking at the data, this region of the country leads for men, for women, across all racial groups, across all ethnicities. It’s not just a rural problem, whatever it is is also in urban areas, as well as everywhere in between and across all age groups.”
Pepper thinks that means experts need to look beyond just white men and see what regional factors might explain the problem. Rurality is certainly one, as is the isolation that goes with it; Wyoming is nearly twice the size of New York state but with only 586,000 residents has less than 1/30th the population. She also notes that self-reported depression isn’t higher in the mountains, but alcohol and drug abuse are. Unemployment and low income are associated with high risk of suicide; Wyoming’s employment rate withstood much of the recession of the 2000s, but a recent drop in the prices of oil and minerals, which form the foundation of the state’s economy, is starting to wreak havoc on the finances of many families. There’s also the high rate of gun ownership.Here’s Guns Tease No. 2.The cracked earth of Kenny’s ranch (left). A view of Bighorn National Forest through the rear window of Kenny’s Ford (right). Originally published at FiveThirtyEight.
After the brief hospital stay and months in therapy, KennyAnd now we’re back to Kenny. Thank God. Big props for pacing and balancing character with issues. Even the most urgent and eloquent writing about statistics, policy, and public health runs the risk of losing many readers whose engagement depends, at least in part, on their interest in the fate of individuals. Just above this paragraph, I had scribbled in the margin: “Back to Kenny soon, I hope.” said many of his life worries are still there, but things are very different today. “I can say right now that I’m better today than I was two weeks ago,” he said. “It’s hard to explain, it’s like I had to restructure my life. It took a lot of people a lot of time, but I’m happy to be alive.”
He said a lot of support has come from his family, even if they didn’t understand what was going on at times. He joined a church last year, and has spent time with the pastor, with whom he hit it off immediately and now counts as a friend. He was prescribed a few different regimens of medicine to help with his anxiety and depression, and feels lucky he found the right combination and dosage, since previous medications hadn’t helped. Before that happened, he’d wake up in the middle of the night, filled with what he calls the doom and dread, a sick feeling in his stomach that wouldn’t let him sleep. “The first night I was in the hospital, that happened that night. And the next day, I saw a doctor up there and she put me on some different medication, and that waking up, that never happened again,” Kenny said.On the one hand, this is a fairly typical example of how stories like this one often progress: The central character turns a corner and gets better, or at least starts to get better. On the other hand, now is a good time to pause and appreciate the work the writer has done to build trust with the source, to get him to open up about such personal information. Think about how much thinner this story would be if the writer had spoken with Kenny for 30 minutes by phone and that was it. Or worse, just emailed some questions.
Ashley Fauber has been Kenny’s therapist since right after the eventWhich event?; after Kenny was first released from the hospital, he made the three-hour round trip drive from his rural home to Cody several times a week to see her as part of an intensive therapy program. Fauber said she often asks patients, “What made you come through my door? Because my door isn’t easy to come through.” Like Kenny, a lot of her patients are used to figuring out their own problems, never asking for help. Kenny said later if it hadn’t been for his wife and daughters, both their support and his desire to be there for them, he never would have made it that far.The Michelenas keep a dense mosaic of family photos mounted on their fridge (left). Kenny’s wife, Lisa, in their living room (right). Originally published at FiveThirtyEight.
Efforts to prevent suicide mostly fall in three broad categories: means reduction, which lowers the likelihood that someone in crisis will have access to a way to harm herself; awareness, so that people know where to get help and the general public knows how to spot someone in crisis; and perhaps most important, changing health care, by training primary care physicians to recognize symptoms of depression and mental illness as well as improving mental health treatment so that people don’t reach a point of crisis.
Some of the efforts around awareness, such as billboards and hotlines, have shown little success in Wyoming.The unexpecteds keep coming. What I appreciate about this information and Barry-Jester’s approach to delivering it is that it helps push back against the forces of oversimplification, yet without sounding heavy-handed about how wrong conventional wisdom can be. There is no over-the-top, voice-y writing like: Face it, already. What we think we know about suicide and suicide prevention is utterly and completely WRONG. There are many occasions when that style of writing is appropriate, if not masterful (RIP Tom Wolfe). Barry-Jester decided that this isn’t one of those occasions and I agree with her. A 2009 study found that such efforts may increase awareness but they appeared to have no effect on reducing suicide or getting more people to seek treatment. AnotherLinks here, and throughout the story, play the subtle but important role of reminding the reader that the reporter has done her homework. found that teenagers felt less likely to seek help if they had seen a billboard. Russler said his organization handled the calls from a hotline set up a few years ago, and just 12 phone calls were received over the six months that it ran in Park County (he also notes that none of those people actually came in for services). “We’ve thrown a ton of money at suicide prevention; all the attempts to increase awareness, media campaigns. That’s come and gone, and it hasn’t made a dent,” he said.
Reducing access to lethal means is one of the few tactics that has been shown to prevent suicide at a population level, either by making it more difficult to get a hold of a highly lethal method or by making that method less lethal. For example, particularly lethal pesticides were restricted in Southeast Asia, and the quantity of carbon monoxide in residential gas was reduced in the United Kingdom. But reducing the risk in that way isn’t always straightforward. In a state such as Wyoming, where firearms were involved in the largest share of deaths but are widely owned and used, it is a particularly complicated topic.“Particularly” twice isn’t particularly egregious, but this final sentence feels … unfinished. By this point the reader knows the overlapping issues of guns and suicide are “complicated.” The writer needs to do more than state that.
There is a well-established relationship between individual firearm ownership and suicide by firearm.
Now for the payoff. The writer has taken us through the issues and challenged some common assumptions. A reasonable reader arriving at this point in the story has not only learned about Kenny’s struggles, but also followed along with the writer on her search for increased understanding of the connection between suicide and guns. If she had started here, with these studies and numbers, this article would be more of a polemic, and, I would venture, less likely to engage anyone who wasn’t already a staunch supporter of gun control.More guns per household at the state level was also a strong predictor of suicide rates for both men and women, according to a May study from Boston University that looked at data from 1981 to 2013. Gun rights advocates have made the case that people will find an alternative method if a firearm isn’t available. And a 2008 survey commissioned by the state of Wyoming found that three-quarters of residents didn’t believe that reducing access to firearms can impact the state’s high suicide rate.Need Help? Call the toll-free National Suicide Prevention Lifeline at 1-800-273-TALK.
While the research on the subject is mixed and very limited, it appears likely that suicide attempts are impulsive acts that can be prevented sometimes if the means of a planned attempt are taken away. And because other means are less lethal, not having access to a firearm can still be lifesaving, even if an attempt does take place. About 70 percent of survivors won’t go on to attempt suicide again, and 90 percent won’t die by suicide, according to a Harvard review of studies on survivors. That applies not only to firearms but to other methods, as well.
“We know [that] when people are in crisis, they use the method that is available to them,” said Terresa Humphries-Wadsworth, director of suicide prevention programs for the Prevention Management Organization of Wyoming, which manages all community suicide prevention efforts for the state. “If you remove one of those methods, whether that’s the pills or whatever, then they are less likely to go out and seek an alternative method, because they aren’t very good at problem-solving in that crisis moment.”
Those trying to address suicide in Wyoming say that national conversations about gun control often hurt local efforts to reduce access to firearms for people in crisis. BJ Ayers, a mother of three and the founder of Grace for 2 Brothers, a nonprofit organization in Cheyenne that works on suicide prevention, has made suicide prevention her life’s work. “I don’t want to take your guns away; I want to make sure that the gun is not accessible to a person when they are in a mental health crisis,” Ayers said. It’s been hard for her to get people to see the difference.
Gun violence is a deeply personal topic for her. In 2005, her youngest son took his life. Four years later, her middle son did the same. Both young men used firearms. Ayers and her organization have spent the last 10 years trying to beat back the suicide rate by building support networks for survivors, educating the community on suicide and holding an annual walk to raise awareness in hopes that the numbers will drop. “When we talk about gun violence, I just ask that we put our political views aside, and realize that this is a conversation about access to lethal means for someone who is in a mental health crisis; it has nothing to do with control,” Ayers said.
At his first appointment, Fauber asked Kenny whether he had any guns at home. He has a beautiful wood and glass gun case, which he made, in the corner of the family’s sun porch, and another rifle case sits in the living room. He keeps one in just about every vehicle, another in the workshop. “I don’t go anywhere without my gun. I rarely use it, but I guess it’s habit,” Kenny said later.Kenny drives back to his ranch from Bighorn National Forest (left). A box of 9mm cartridges in his truck (right). Originally published at FiveThirtyEight.
Out the front windows of Kenny’s cabin-style home, across a winding gravel road and a handful of other ranches, lie the Big Horn Mountains. Hunting there for elk was the only vacation he remembers taking as a child. Recently, hobbling around on a broken foot that was crushed by a young horse, he said he’d spend all his time riding around out there if he could. Having a gun is practically a necessity for survival in that landscape, which is home to bears, mountain lions and coyotes.
Kenny told Fauber that he did have guns and reluctantly told her that he was still thinking about using them to harm himself. By his next appointment, he admitted to her that they weren’t out of the house. So she called the local sheriff and, along with several other officers, he went over and moved them to Kenny’s brother’s house. Fauber remembers how concerned Kenny was about whether he’d get them back. He still has trouble talking about it, even as he’s opened up about other aspects of his struggle with depression.
“Was it hard for me to admit that I wasn’t safe around my guns? Yeah, it was really hard,” Kenny said. After he was out of crisis, the guns were brought back. Today he has proudly holstered them in their display cases.Again, Kenny proves to be a superb source, and the writer proves her skill at coaxing him to share.Mark Russler at his office in Worland, Wyoming (left). Ashley Fauber at her home in Cody (right). Originally published at FiveThirtyEight.
Even when someone has already shown himself to be suicidal, we aren’t always good at keeping him safe from lethal means. A recent study from the University of Colorado looked at suicidal individuals in seven states who had made it to an emergency room, and found that more than 50 percent hadn’t been asked whether they had a firearm at home, or any other lethal means of attempting suicide.2 “We are missing the chance to save a lot of lives,” the study’s author told Science Daily.
Russler said that more often than not, families are supportive of keeping firearms away from suicidal members. “A lot of times someone will tell us they don’t [have a gun], but then their family members will tell us, ‘Oh yeah, they’ve got a handgun in their truck, it’s loaded.’” He acknowledged that making it harder for someone to get their hands on a means of attempting suicide is incredibly important, especially in a place where people don’t readily seek help, but he doesn’t think gun control laws are the answer. “I would not be a proponent of reducing access to someone owning a firearm,” Russler said, although he is in favor of using the screening that’s already on the books to make sure suicidal people aren’t buying firearms,3 and more generally to keeping guns stored in a way that makes them harder to get when someone is in crisis.This is quite a passage. As far as writing strategy, the content delivers a clear message: Solutions to this problem are not easy. Barry-Jester also lets her source speak; too often writers will get in the way, interrupting the speaker with commentary or attempts at distillation that may not be necessary. In addition, this paragraph tees up yet another twist. The next few sentences are still about firearms and access to them, but everything that follows looks beyond guns, to mental health, availability of services, changing attitudes about depression, and so on. With a light touch, Barry-Jester is showing, without saying, that all is not what it seems.
Wyoming is handing out gun locks in some areas in an attempt to reduce immediate access to firearms. While it’s hard to reduce the lethality of a firearm, the gun locks add a step to overcome before someone is able to use one, much like storing it in a locked case and keeping the ammunition separate. But Pepper said it’s unclear how many barriers need to be in place to really reduce the risk; moving guns out of a room probably isn’t enough, but moving them out of the house might be. It’s unclear where gun locks fit on that spectrum.
The prevention programs in place in Wyoming,This transition from the previous paragraph is a little jarring, jumping from the quite specific matter of gun locks and small barriers to Wyoming’s (suicide) prevention programs generally. A little more connective tissue between the more specific point and the zoom-out could help. which mostly come from a database of evidence-based practices kept by the Substance Abuse and Mental Health Services Administration, have all been successful in small communities in research settings. They haven’t been deployed at scale, however, in a way that has reduced the rate of suicide. As the national suicide rate rises, officials in Wyoming hope they can change that.
In 2012, Wyoming began a statewide push to get people trained in QPR, which stands for Question Persuade Refer. The idea is that, as with CPR training (the similarity in the names is not a coincidence), if enough people in a community are trained to recognize the signs of crisis or suicidal behavior, then someone will be able to intervene and get a person to treatment before they harm themselves. Wyoming has gone all in on the program: It has the highest concentration of trainers for the program of any state, and Humphries-Wadsworth said more than 10 percent of adults in the state have been trained. However, the impact of the program isn’t clear yet, she said, and it will be several years before it is.A note Lisa left for Kenny (left). A framed photo of their daughters (right). Originally published at FiveThirtyEight.
Like most things in Wyoming, mental health treatment is often far away for people in rural areas. Still, the state has a fairly extensive network of community mental health programs, most of which accept payment on a sliding scale. The most common problems that people seek treatment for are affective disorders, such as depression and anxiety and bipolar disorders, which account for nearly 30 percent of the problems patients in the program experience. Alcohol-related problems are next, making up nearly 18 percent. All of these disorders are associated with high rates of suicide.
In the northwestern corner of the state, Russler and his colleagues are testing the program that Kenny took part in, called Brief Intensive Treatment.This is deft stitching of macro-level issues with the life of the main character. The idea is to help prevent suicidal people from having long stays in a hospital, and to get them more targeted, intensive therapy that involves the whole family. The first published evaluation of the program found it to be more effective at treating patients than traditional intensive therapy programs, though further studies are needed to determine if, and how well, it’s working.
Russler said he feels good about the programs in place, but thinks the reason they haven’t reduced the state’s suicide rate is that the highest-risk people are often the hardest to reach. “When we can get people to us, to treatment, they usually do well,” he said. While some people question whether there are enough mental health providers in Wyoming, Russler suspects that’s not the problem. Sure, they could use more specialists, he said, but the real problem is getting people into the mental health system. “The people committing suicide, they’re the ones we’re not seeing.” That’s why he thinks changing local attitudes about seeking mental health care, which he said is often seen as a sign of weakness, is key.
Russler said he’d mainly like to see mental health professionals placed into primary care settings, such as family doctor’s offices, and primary care doctors that are trained in recognizing signs of depression and anxiety.
When KennyOnce again, Barry-Jester’s sense of tempo and dosing shines through. If discussion of mental health delivery were to continue much longer without a return to Kenny’s story, the writer would have risked losing readers. was looking for the source of his shoulder pain, he went to several doctors, and he exhibited other kinds of distress that could have been recognized by a trained professional as clues that his mental health was not good: sleeplessness and anxiety, among many others. There’s evidence that this missing of signs is common with people who attempt suicide. A 2014 study examined the records of 5,894 people in seven states who died by suicide between 2000 and 2010. The researchers found that 83 percent of those people had received some sort of health care in the year leading up to their death (64 percent of those were primary care visits), yet only half had had a mental health diagnosis. While suicide attempts may often be rash, desperate decisions, the depression and anxiety that often lead up to them are not, particularly in adults.A view of the Michelena ranch from the main road. Originally published at FiveThirtyEight.
“I wish you could have seen him then, so you’d know how far he’s come,” Fauber said recently, recounting Kenny’s progress. “He’s so much fun,” she laughed, musing that she could easily sit around and talk to him all day, every day. When he first saw her, he was reticent, and had a hard time opening up about himself, what he was feeling. He was deeply concerned about not being able to work and provide for the family, and overwhelmed by the dark feelings and physical pain he was experiencing. Fauber started working with him the way she does with most patients — by explaining how the brain works. “Everybody wants to know why they feel the way they feel. I will literally draw a brain on the board,” Fauber said.
Kenny slowly opened up about some of his traumas. He can talk about them now, though he isn’t totally sold on the idea that triggers from his childhood are affecting him today. He says he had a great childhood: His mom kept a big garden and had something freshly baked for him nearly every day when he got in from working. His father kept up to 1,200 sheep, sometimes lambing a hundred in a day during birthing season.
But he also acknowledges that there’s another side to his story. An alcoholic father who suffered from chronic pain that likely came from the same blood disorder that plagues Kenny. Hard work from an early age that sometimes leaves him longing for a childhood he never had. Multiple family members have been treated for depression. Kenny now sees the connection between those things and his own battles. “I still feel bad, maybe even ashamed, that I fight depression,” he said, but he also says he’s learning to accept that the chemical and emotional legacy isn’t something he can change.
Kenny’s youngest daughter recently came home with a tattoo. It is of a small semicolon on her ankle, a symbol that represents a movement to acknowledge mental health concerns and promote suicide prevention. She told him she was glad he put a semicolon in his life instead of a period.This short graf confused me. There isn’t enough on Kenny and his younger daughter’s relationship in the rest of the piece to make this pay off as an ending/near-ending.
Kenny hasn’t talked to many people about his struggles with depression. He hasn’t told his neighbors, and he chose to see a therapist in a town an hour and a half away because when he went to a center nearby, he was connected in one way or another to most of the people in the office. He was clear, however, that if he could help prevent someone else from getting into his situation, sharing his story would be worth it.Strong ending. Neither cheery nor dismaying, it sounds sincere. What more could a writer want?
This article is part of our project exploring the more than 33,000 annual gun deaths in America and what it would take to bring that number down. Our podcast What’s The Point is highlighting the project all week.
A longtime contributor at Wired, David Wolman has also written for publications including The New York Times, The New Yorker, Outside, Nature, and Bloomberg Businessweek. His work has twice been anthologized in the Best American Science and Nature Writing series, and his Atavist Magazine feature about Egypt’s revolution was nominated for a National Magazine Award. A former Fulbright journalism fellow in Japan, he is the recipient of an Oregon Arts Commission fellowship, and he has published four nonfiction books: The End of Money, Righting the Mother Tongue, A Left-Hand Turn Around the World, and Firsthand. He is currently working on a book about cowboys (HarperCollins, spring 2019). Follow Wolman on Twitter @davidwolman.
The post Storygram: Anna Maria Barry-Jester’s “Surviving Suicide In Wyoming” appeared first on Showcase.
The following story diagram—or Storygram—annotates an award-winning story to shed light on what makes some of the best science writing so outstanding. The Storygram series is a joint project of The Open Notebook and the Council for the Advancement of Science Writing. It is supported in part by a grant from the Gordon and Betty Moore Foundation. This Storygram is co-published at the CASW Showcase.
Suicide. Guns. Mental health. Not exactly light fare. Yet with thorough reporting, careful structure, and a compelling lead character, a story about such serious social issues doesn’t have to read like a white paper or a variant of the same opinion piece on gun deaths you’ve already read (or skimmed) 20 times. In her measured and thoughtful piece “Surviving Suicide in Wyoming,” FiveThirtyEight’s Anna Maria Barry-Jester uses material gathered to maximum benefit, delivering an informative, sensitive, and nuanced look at a difficult issue.Editors’ note: We are saddened by the recent suicides of Kate Spade and Anthony Bourdain. This Storygram was written and readied for publication before their deaths, and we feel that the best way to honor them, as well as the scores of not-famous people impacted by suicide and mental illness, is to publish. The more people who read and think about the important issues raised in Barry-Jester’s piece, the better. For more information on reporting on suicide, read this.
When we recently announced our new series on patient harms from misleading media, I heard from Robert O’Connor, PhD, research head for the Irish Cancer Society. He wanted to add an international perspective to what we were seeing about cancer misinformation in the U.S., and he wanted to help bring more patient voices into the discussion.””
O’Connor is concerned about manipulation of sick patients and the worried well. He cites GoFundMe web pages that are increasing in number – “especially directed at raising 200,000 Euros for people to travel and receive unproven and often quack treatments in German and Turkish ‘clinics’.” He and some colleagues advocating evidence-based health advice have crossed swords with many vested interests that he thinks might harm people who are worried or impacted by cancer.
It bothers him to see people making money while spreading misinformation about diet and cancer prevention and treatment. And he opposes companies selling diagnostic tests indicating patient benefit while providing no data, and anti-medicine advocates who he says use “various unsavory means to intimidate and cast doubt on methods to prevent and control the development of cancer.”
He put me in touch with patients he had met through social media. Just as social media connected those patients with O’Connor, and connected O’Connor with me, Twitter and Facebook make it easy to spread messages of false hope, unsubstantiated cure claims, and snake oil marketing to desperate patients around the globe. Joanne Taylor of the UK, one of the patients, wrote to me: “It’s a minefield and people are just desperate sometimes. But people are losing their life savings and their homes, paying for treatments. And this shouldn’t be.”Feeling vulnerable to cancer misinformation
“It’s shocking that people get away with this,” said Sonya Canavan of Colorado. “Patients can’t compete with marketing pros who play the game and do it well. I want to tell people not to fall for nonsense because patients are dying,” She was diagnosed with and treated for triple-negative breast cancer ten years ago when she was 39.
“The bottom falls out of your world,” she said. “I had young kids – 13, 8 and 6. Now my kids have a family history, so I’m always wondering if I could protect them by buying a supplement. Every time I see something I still get excited. Maybe I could guarantee my kids never get cancer. Everything sounds so promising and hopeful. I don’t know who to believe. Most people won’t dig as deeply as I do.”
Claims made for the ketogenic diet are at the top of her list of complaints. “I don’t have any active treatment options left, so I’m always looking for other ways to protect myself. The claims sound fantastic, miraculous, things I can do without going back to my oncologist. It sounded like a really good idea for me.”
That’s when she connected with O’Connor through Twitter. He helped debunk the bunk.
There’s a lot of that to go around. Canavan ticks off miracle claims for cottage cheese, baking soda, flax oil, nutraceuticals, algae pills, trampolines to drain your lymph nodes, high-frequency infrared saunas.
When she visited some online patient groups, she read claims from supposedly Stage 4 cancer patients who said they cured themselves and were now younger and more beautiful. She believes that some of these claimants were not actually patients but sellers of multi-level marketing products. She also believes that some snake oil salespeople pay people on social media to promote things for them – for a commission.Take the Cancer CRAP Test
Eileen O’Sullivan of Dublin, Ireland was diagnosed with triple negative breast cancer in January 2013. She wrote to me that her experience closely mirrors Sonya Canavan’s “and indeed we often come across the same woo, disinformation and pseudoscience which is targeted at cancer patients for commercial gain.”
“I think what upsets me the most,” she wrote, “is when I see slick and manipulative marketeers preying on the anger and fear of patients and strongly suggesting that the patient’s medical team is not up with the latest science or are taking backhanders from the pharma industry and don’t have the patient’s best interests at heart. Planting seeds of doubt and mistrust. Trust and a positive open relationship with their clinical teams and allied healthcare professionals are crucially important for patients emotional wellbeing.”
O’Sullivan recently gave a talk entitled, “Decoding Cancer Science Fiction.” It captures perspectives that many people with cancer – or other serious illnesses – undoubtedly share. I encourage you to read her slides. (Acrobat 10.0 or later may be required.) In the talk, she pointed to a Cancer Claims CRAP test (more information here).
Joanne Taylor of the UK was diagnosed with breast cancer 11 years ago, married with two young children – one 2 ½ years old, the other just 5 months. Seven years later she was diagnosed with secondary breast cancer. She created a website, ABCD – or After Breast Cancer Diagnosis to help women with the choices they would face – or should be offered – driven mainly by her own experience with a lack of choice on breast reconstruction.
Shortly after we were connected via email, she reacted against what she called scare-mongering in a story by the Telegraph newspaper of London. The headline was “Chemotherapy warning as hundreds die from cancer-fighting drugs.” The story began: “Patients should be warned about the dangers of chemotherapy after research showed that cancer drugs are killing up to 50 per cent of patients in some hospitals.” Taylor wrote to me, “It doesn’t tell you whether these patients were in palliative care or what their status was, so again complete panic and confusion by the general public. People may die due to this kind of reporting as they will decide against chemotherapy. My oncologist says he has people refusing and knows that their best chance is what he has suggested.” She says others will frame chemotherapy as a conspiracy, and assert that drug companies have a cure that they’re just not giving to people. And that will lead some patients to believe claims that “keto, snake oil, alkaline, bicarbonate, apricot kernels, positivity, etc., has cured my cancer.”
Robert O’Connor looked at the Telegraph story and the study upon which it was based and wrote: “That’s a truly shocking interpretation of the data. As you might have suspected the study is pointing to inadequacies in treatment decisions and the provision of chemotherapy to patients who don’t benefit from it. The risk of death is vastly higher in patients who have poor performance than those who are proportionately in good health. Lung cancer patients unfortunately often present in an advanced state and may be desperate for treatment, not knowing how advanced their disease is. In that case a doctor cannot refuse treatment even though they know that the benefits may be marginal. Anyway, a great illustration of poor scare mongering reporting.”
Harmful scare mongering at one end of the spectrum. Harmful marketing hype at the other end. This is the range of cancer misinformation that many patients face – regardless of which side of the Atlantic they live. And you don’t find out patients’ perspectives unless and until you ask. Victor Montori, MD, of the Mayo Clinic, talks and writes about a patient revolution. If you look for it, you’ll find that it is already underway.Other reading
David Gorski’s piece on the Science-Based Medicine blog, “Ketogenic diet does not ‘beat chemo for almost all cancers’ ”
Our entire series on patient harms from misleading media messages can be found on this page.
Theranos, the fraudulent laboratory company whose rise and fall is recounted in a recent exposé entitled “Bad Blood,” was a darling of investors and news outlets for a more than a decade. The company suffered a rapid change of fate in late 2015 after Wall Street Journal reporter John Carreyrou revealed the shaky underpinnings of its technology, which launched the company into a gauntlet of financial and legal jeopardy.
For many of us in the pathology community, the writing was on the wall long before Carreyrou’s article was published. Had journalists consulted pathologists as expert sources, the news coverage of Theranos might have been less fawning and more skeptical. Patients might have been spared erroneous tests.
Pathologists are physicians who are experts in laboratory medicine. When patients undergo laboratory testing – on bodily fluids, cells, or biopsied tissues – those tests typically are overseen by pathologists. We ensure that tests are run using accurate and reliable methods and we provide actionable interpretations for complex tests, such as cancer diagnoses or genetic testing.Unchecked enthusiasm
Elizabeth Holmes, founder of Theranos, promised to disrupt the system, suggesting that traditional pathology methods were stale, outdated, and even inhumane. Health and technology reporters regularly quoted her making such claims. Yet as “Bad Blood” revealed, Holmes hired a dermatologist as her laboratory director after a pathologist questioned the company’s commitment to safety and accuracy, ultimately quitting as director. This makes me wonder how little she trusted pathologists – or perhaps how much she wanted to obscure her company’s deficiencies.
It was a pathologist, however, who provided a tip to Carreyrou, which in turn led to the reporting that brought down the company. Before that, journalists didn’t seek us out. Consider this glowing 2014 article in WIRED magazine. No pathologists were interviewed to provide perspective on Holmes’ astonishing claims. The same year, Fortune magazine published an equally enthusiastic article, in which a hospital CEO and an orthopedic surgeon provided admiring quotes. (I wonder if the same journalists would have called up a cardiologist for an expert opinion about an innovative new cancer treatment.) In a 2015 Inc. magazine profile, a couple of paragraphs are dedicated to questioning the validity of the tests, but they’re lost in a sea of flattery. Criticism is chalked up to unnamed “competitors and some in the medical community.”Pathologists’ unrest
For years, I’ve discussed Theranos amongst my pathologist colleagues, most of whom were skeptical from the beginning. The promises were, quite simply, too good to be true. If the thousands of laboratory tests being done on standard venous blood samples could be so easily replicated with finger-stick blood, it surely would have been done. Both the source of the tested blood, as well as the volume, are critical elements to laboratory testing. Many tests do now have both standard and finger-stick options, such as blood sugar testing in diabetes. Finger-stick tests require careful validation – by correlating results to standard tests – and often still do not achieve perfect accuracy.
Could pathologists have warned the public sooner? No one can replay history, but consider this detailed examination of Theranos published by a pathologist before Carreyrou published his stories. Robert Boorstein, MD, deftly breaks down Theranos’ business model, which claimed their technology would allow blood collection and testing to occur in retail drugstores. While news reporters parroted such claims, Boorstein found that blood samples were not being tested in-store because the company had not hurdled necessary FDA regulations. He wrote:
As it operates today, it appears that Theranos has moved to a typical hub-and-spoke model with minimal advantages and several disadvantages compared with competing labs.
Given these observations, Theranos does have one factor that works in its favor: This is the general belief by many smart people that Theranos “can’t be making it up.” Obviously, I have no better idea about this as any other outsider. Having said that, it is always useful to remind oneself that “if it sounds too good to be true,” it probably is!
Pathologists would have provided knowledgeable perspective for some of Holmes’ more extravagant visions, such as her promise that a Theranos test that would be able to “see the onset of pancreatic cancer 17 years before a tumor forms.” Diagnosing cancer, however, doesn’t happen by algorithm – it requires a pathologist’s examination and judgment.Room for improvement
Let me be clear – there are surely many laboratory tests that could be automated or improved. In my view, Theranos could have developed accurate fingerstick testing for some tests (as other companies have in the past). However, the company promised not only easier blood draws, but faster, more accurate, and cheaper testing – and not just for a single test, but for an entire menu of options. All this from an ambitious but inexperienced engineering student.
Notable Silicon Valley successes have perhaps primed us to be open to such an incredible possibility, but it seems to me that journalists and investors threw common sense out the window. Anyone should know that simultaneously better, faster, and cheaper technologies are hard to create. Admittedly, laboratory testing is a topic that spans biology, engineering, medicine, and the law. Too often, even diligent journalists may reach for the most accessible quote, instead of the most reliable one, when they’re faced with a deadline.
It’s easy to blame news outlets, as I have done. There will be no shortage of journalism autopsies detailing the inadequacies that led us to overly rosy takes on Theranos. Physicians also have a responsibility when they act as expert sources for journalists. A recent set of media ethics guidelines from the American Medical Association implores doctors to only provide only information that is “commensurate with their medical expertise.” Laboratory testing is a conundrum, as all physicians utilize laboratory tests – it’s easy to think that because you know how to interpret a test, you also understand how it’s performed. Viewing laboratory testing as a mysterious black box plagues other doctors as much as it does journalists.A case for pathologists
Theranos will soon be yesterday’s news, but the promise of easier testing still holds immense appeal. Stories about liquid biopsies – blood-based tests for cancer – continue to appear in the news and continue to be misreported. If journalists writing these stories consulted pathologists, they could help readers understand why such tests are a long way off. Liquid biopsies are essentially genetic tests and most cancer diagnoses today are still made by examining cells under a microscope. Because only a minority of cancers are now treated based on genetic mutations, blood-based diagnostic tests will not replace traditional biopsies anytime soon.
Even as I argue that journalists should speak to pathologists as experts in laboratory testing, I must point out that like any physician, pathologists can have conflicts of interests, which might bias their view.
Still, I encourage journalists to reach out to pathologists for topics such as:
- Cancer diagnosis and screening
- Laboratory safety, quality, and accuracy
- Laboratory regulation
- Genetic testing and hereditary diseases
- Precision medicine
- Infectious diseases
How to find a pathologist? Reach out to pathology faculty at academic medical centers or call the College of American Pathologists to help coordinate an interview with an appropriate expert. (Disclosure: I volunteer for this organization, but it had no involvement in this article). We want to lend our expertise and engage in a dialogue to help journalists and consumers better understand how laboratory medicine affects patients.
The CBS Morning News packed so much hyperbolic punch into one piece, it was breathtaking. They promoted the piece as “only seen on CBS This Morning,” and thank goodness for that.
Keep in mind that the story admitted that the compound hasn’t been tested in humans yet. In that context, let these claims soak in:
- The story referred to the work as “breakthrough” and “revolutionary.”
- “…could be a big step forward in dealing with the growing opioid crisis”
- “It works by clinging to a different receptor in the central nervous system than opioids, eliminating the narcotic high, abuse and dependence risks.” It works in what? Not people yet.
- “Several other biotech companies, as well as researchers at universities, are working to develop similar drugs, with different approaches.” So will CBS provide free air time for all of those other biotech companies? If not, why not?
It is important for journalists to track research progress in the midst of the opioid crisis. But journalists who don’t report on these issues full-time should not be allowed by their editors and managers to run up to the winding stream of science, dip their toes in, and then run back and file a breakthrough story with no regard for the downstream work of science to get from here to there with such wild claims. The decades-long boulevard of broken dreams of past attempts to develop painkiller alternatives cannot be forgotten. Many looked great early in the research. The mechanism made sense, building on what’s known about pain pathways. Some continued to look terrific in animal research. And then the human trials delivered the bad news.
“It could be five years or so before the drug makes it through clinical trials to see if they confirm its claims.” So this story was free publicity five years too early.
We’ve just wrapped up a busy week of scrutinizing the news coverage of the world’s largest cancer meeting.
On the plus side, you’ll find a host of incredibly talented and committed providers eager to learn and eager to make progress. Troubling influences also are evident as medical research is more industrialized and promotional — and much of what is presented and promoted is not yet ready for primetime.
Some of these same problems — too much, too soon — plague journalism. But apparently, the reporters we feature below didn’t get that memo. Their reporting is “slow” in the best sense of the word: careful, considered, and taking the time to dig beneath the surface.Gary Schwitzer | Publisher & Founder A Promising Cancer Treatment Made Patients Worse, Not Better • Denise Grady • The New York Times
Perhaps especially because it was published in the same week that we have all been bombarded with cancer news from the American Society of Clinical Oncology (ASCO) annual conference – a good share of it hyperbolic, simplistic, or incomplete – this New York Times piece stood out with an important reminder.
Prompted by a letter to the editor of the New England Journal of Medicine, it is not the kind of thing that most health care journalists notice — much less decide to write about. But this item was newsworthy, so kudos to Denise Grady of the Times for jumping on it.
She leads the story responsibly, in context and with perspective, noting that immunotherapy drugs have helped many people in recent years reach “remarkable recoveries.” Next, she transitions to the NEJM story, about three patients with an uncommon blood cancer quickly becoming much worse after a single treatment with one such drug.
Her nut graf – the paragraph that tells you the kernel or essential theme of the story – was this:
The cases are a sobering reminder that immunotherapy is still in its early days, and can unleash powerful forces that are not fully understood. Patients and doctors are eager to try the treatments when other options have run out, even for cancers in which they haven’t yet been tested. Sometimes those hail-Mary efforts work. But they can backfire.
Grady discussed drug costs, quoted five immunotherapy specialists, and wrote a story nearly three times longer than the letter to the editor upon which it was based.
Journalists who write about health care must get beyond reliance on spoon-feeding from news releases from medical journals, academic medical centers, industry and elsewhere. Our 12 years of data show an undeniable pattern of a majority of stories that exaggerate or emphasize potential benefits of interventions while minimizing or totally ignoring potential harms. That, as we have demonstrated, carries a strong potential for harming patients.
The Times certainly delivered a story that was fit to print.Mary Chris Jaklevic | Reporter-Editor Pain & Profit • J. David McSwane and Andrew Chavez • Dallas Morning News
Imagine being confined to a bed for 17 hours a day with no one to look after you, utterly alone and unable to move. That’s the predicament of a 38-year-old paralyzed women featured in this series, which reports she’s one of at least 8,000 medically frail children and adults who are suffering with unmet medical needs since Texas put them into Medicaid managed care plans and failed to oversee the results.
What are those results? Patients are harmed, as essential benefits such as nursing care and medical equipment are yanked away, and private companies profit under what McSwane and Chavez reveal to be a system of “perverse incentives,” in which companies pocket higher monthly fees to cover the most vulnerable patients, with lax oversight. “Whatever benefits managed care may have for healthy kids, our investigation shows it’s not working for sick people,” they write.
Medicaid is often overlooked and misunderstood in discussions about quality of care, even though it covers 1 in 5 Americans, including many children and people with disabilities. This series provides a good primer on what it does and why we should pay attention to how it is funded and monitored.Joy Victory | Deputy Managing Editor A Death in Slow Motion • Charles Ornstein and Mike Hixenbaugh • ProPublica and the Houston Chronicle
These days, medical sagas often unfold in real-time, online. Such was the case for James Lewis, who received a heart transplant earlier this year. Initially hopeful, his wife Jennifer shared frequent updates on Facebook about his recovery. As the weeks stretched on, and Lewis’s complications piled up, her updates turn increasingly frustrated.
Reporters Charles Ornstein and Mike Hixenbaugh use the Facebook posts, along with interviews and reporting, to craft a remarkably gripping read. It’s one of several articles from an investigative series, Heart Failure, that examines the decline of a historic heart transplant program.Jill U. Adams | Associate Editor She paid nothing for opioid painkillers. Her addiction treatment costs more than $200 a month. • by German Lopez • Vox
This Vox story shows how insurance coverage can be terribly misaligned with appropriate health care. Journalist German Lopez, who covers the opioid beat with terrific reporting and insight, profiles a woman who became addicted to her prescription pain killers and wanted to quit. She entered an intensive outpatient treatment program and was prescribed medication for addiction. But her insurer, who fully covered her Vicodin for pain, wouldn’t cover her Suboxone for addiction. Lopez further explores the restrictions on buprenorphine with voices from health insurers, addiction specialists, and policy experts.
The incentives are all backwards, as illustrated by this plaintive quote from the featured patient:
“It’s way easier to get opiates or heroin. … It’s so much easier than dealing with this bullshit.”Michael Joyce | Writer-Producer Doctors Scrutinize Overtreatment, As Cancer Death Rates Decline • by Richard Harris • NPR Health Shots
A slew of journalists covered the world’s largest cancer meeting (ASCO) this past week and — as we noted in following their coverage — filed stories with plenty of positive spin, minimized harms, and even promises of “holy grails.”
But veteran NPR science journalist, Richard Harris, didn’t do that. He saw something different.
Harris found three examples of studies suggesting less treatment may be more, and plainly asks: “Why are doctors giving patients challenging and unnecessary treatments?”
I could summarize his proposed explanation here but I suggest you read it for yourself. It’s as insightful and clever a distillation as you’ll read. It goes right to the core of one of the most insidious problems plaguing our medical-industrial complex.
Please Note: These stories have not been subject to our rigorous, 10-criteria systematic review for accuracy, balance, and completeness. Rather, they represent pieces of health care journalism and opinion writing that members of our staff found compelling and wanted to share with others.
5-Star Friday is a regular feature on HealthNewsReview.org. You can find a list of previous installments HERE.Getty Images
A 49-year-old Floridian named Judy Perkins with metastatic breast cancer, whose illness has progressed despite multiple trials of chemotherapy, goes into complete remission after being treated with immunotherapy by Steven Rosenberg, MD, PhD — whom CBS dubs “a pioneer in harnessing the immune system to fight cancer.”
Rosenberg is no stranger to the spotlight. He became a media darling in 1985 when his research on interleukin-2 generated mega-coverage best described as long on hype but short on scrutiny. What was then heralded as a “watershed moment” and possible “cure” (yes, that word was dangled repeatedly) gradually faded to just a moment.
The media frenzy repeated itself again in 2006 — this time when Rosenberg reported using another form of immunotherapy to bring about remission in two people with advanced melanoma. Heart-warming anecdotes of the fortunate two prevailed over the 15 patients who died.
This week Rosenberg was in the spotlight again. And again, reporters were more smitten than skeptical.
Let’s start with the most egregious coverage: this video segment by Dr. Jonathan LaPook, a chief medical correspondent at CBS:
It’s an anecdote. But that doesn’t stop LaPook — a physician — from calling this one woman’s result a “game changer” and confide with the show’s host that it “blew me away.”
Only 90% of the way through the evidence-challenged segment do we get this:
This type of immunotherapy is still in its infancy … BUT … Judy’s success could open the door to use this kind of treatment for other solid tumors.
See that big, bold BUT? I highlight it because it seems to be going around.The art of the quasi-cautious statement
Here are some big “but’s” from the BBC coverage: ‘Remarkable’ therapy beats terminal breast cancer :
- “The team a the US National Cancer Institute says the therapy is still experimental, BUT could transform the treatment of all cancer.”
- “Dr. Rosenberg added: ‘This is highly experimental and we’re just learning how to do this BUT potentially it is applicable to any cancer.'”
- (Rosenberg again): “A lot of work needs to be done BUT the potential exists for a paradigm shift in cancer therapy.”
See the trend? Give an important caution BUT quickly trump it with a grandiose claim that is not supported by current evidence; a glowing, eye-catching, optimistic, and hopeful promise — as variously described in this single Guardian article :
Ground-breaking … remarkable … unprecedented … dramatic … miraculous … extremely promising … [and] the cusp of a major revolutionThe art of legitimate caution
Legitimate caution — which by the way shows awareness of how science works and thoughtfulness towards those with cancer eager for new advances — looks more like this:
- Perkins was just one of three breast cancer patients in this Phase II clinical trial. One subject died of an infection and the other did not respond. This experimental approach is not currently available.
- NPR reported amongst 45 total patients in the trial with a variety of advanced cancers (ie. colon, liver, lung) there were 7 responders (15%).
- There are many types of immunotherapy (Perkins’ was based on “Tumor-Infiltrating Lymphocytes,” or, TIL’s), many of which have significant side-effects and can cost well over $100,000/year.
- There’s no way of knowing if Perkin’s remission can be attributed solely to the TIL’s.
- This approach, which relies upon identifying very specific targeted mutations in tumor cells, may only work on a limited number of tumor types.
It’s interesting that the aforementioned Guardian article, despite its parade of hyped language, did balance the story with some of these cautions. The BBC story barely did so. And the CBS report was appalling in this regard.
Also, there is another caution that rarely makes its way to the general public. Oncologists have long been aware of a lucky few — dubbed “Exceptional or Super Responders” — who respond to a therapy that over 90% of other patients do not respond to. As mentioned in this 2015 research paper by oncologists Vinay Prasad and Andrae Vandross, it’s very hard to know if the exceptional response is because of the treatment given or because of some biological characteristic unique to the responder’s tumor. They add:
In addition, merely generating robust response rates may be no guarantee of an eventual improvement in overall survival … very few surrogate endpoints (such as response rate) have a strong correlation with overall survival in oncology.The inevitable “but”
The prospect of harnessing our own immune system to attack cancer cells is a compelling and worthwhile avenue of research.
But as it stands now there’s insufficient evidence to make statements regarding efficacy, safety, costs, or how these treatments stack up against existing therapies.
So, at issue here is NOT whether this research is worthwhile, but how journalists handle the “buts” that are inevitable, important, and invaluable.
The case report of Judy Perkins — as published in Nature Medicine as a “letter” — can be found here.
The associated news release from the National Cancer Institute/NIH is here.
“The understanding that wetlands store and purify water has fueled some creative efforts to protect natural wetlands,” Sharon Levy reports. In The Marsh Builders: The Fight for Clean Water, Wetlands, and Wildlife, Levy chronicles the citizen-run battle to construct wetlands in Arcata, Calif., her home since 1994, and explores the impact of water treatment globally on health and the environment.Member blog name: Advance copy: Backstories on books by NASW membersArticle topic: Science writing news
Questions about a ‘simple blood test’ to screen for cancer prompt revealing answer: It’s complicated
We often tell our readers to run for the hills whenever they see a news story touting a “simple blood test.”
You won’t find a better example of why you need to be wary than an exchange between a reporter and a researcher at a news conference at the American Society of Clinical Oncology’s annual meeting over the weekend.
A news release heralded a study to map blood biomarkers in people with cancer as bringing the world “one step closer to being able to detect early lung cancer from a simple blood test.”
The headline even referred to a “blood test” for lung cancer.
But when asked some pointed questions that any consumer might wonder about, researcher Geoff Oxnard, MD, of the Dana-Farber Cancer Institute was compelled to explain that this test isn’t a reality.
Alice Goodman, a reporter for the ASCO Post, asked Oxnard how blood analysis stacked up to a low-dose CT scan, the current screening method, in detecting lung cancers.
Oxnard acknowledged that’s unknown. He noted that unlike a true screening, where apparently healthy people are checked to find out whether or not they have cancer, analysis of the new approach has so far included people whose cancer status was already known, “so we can’t really make that comparison.”
Goodman then asked how Oxnard envisioned the “blood test” being used.
The researcher attempted to clarify: “This is not a blood test. This is a sequencing method that needs to be turned into a diagnostic.”
The journalist asked if the words “simple blood test” used in the news release were misleading.
Oxnard responded: “It has the potential to be a simple blood test.”
Goodman expressed confusion, prompting Oxnard to insist: “It will be a blood test.”
In this case the research is being sponsored by Grail Inc., a startup backed by Microsoft Corp. co-founder Bill Gates and a venture fund of Amazon.com Inc. founder Jeff Bezos.
The company’s narrative that a blood test will be capable of detecting early-stage cancers with ease neatly aligns with ASCO’s recent concerns about low uptake of lung-cancer screening. Highlighting that early and unpublished research at ASCO’s major conference gave Grail and its researchers a surge of news coverage.
Yet some experts say based on the company’s latest data, an actual screening test appears to be years off, if it arrives at all.‘Not very impressive’
Richard Hoffman, MD, director of the internal medicine division at the University of Iowa Carver College of Medicine, said in an email the rates at which the markers under study detected known cancers “are not very impressive.”
Those rates ranged from 38% to 51% for stage I-IIIA cancers, but the news release didn’t break out data for stage I cancers, which is the early stage at which you’d expect to find cancers via low-dose CT screening — the current standard.
Other omissions make it difficult to tell how well a blood test might work in the real world, he said. For example, it’s unclear whether there was an appropriate control group of heavy smokers that would indicate how accurately the markers classify those without lung cancer, and whether patients in the study were asymptomatic, as would be those subject to a screening.
Hoffman has written previously about the hurdles of developing and implementing a cancer screening test based on blood.Predictable hype
Predictably, some news outlets reported on Grail’s research uncritically, downplaying the many caveats.
“The coverage is typical; overly optimistic early in the reports and then some provisos later in the story,” said HealthNewsReview.org contributor Harold DeMonaco, who’s also written about the massive challenges involved with Grail’s goal of creating a blood test for cancer.
DeMonaco, via email, took issue with the heavy use of positive quotes from researchers.
For example, the Guardian’s ‘Holy grail of cancer research’: doctors positive about early detection blood test, quoted a researcher on the project saying, “We hope this test could save many lives.”
That story misled readers with a grandiose headline, failed to mention significant limitations and harms, and neglected the potential cost, according to a HealthNewsReview.org review.
That Guardian’s “holy grail” reporting made its way onto some local TV news stations.
More balanced was CNN’s Blood test offers hope of finding cancers before symptoms develop, which offered several caveats. Yet the message distilled in a tweet seemed premature:
Coverage from some news outlets “did a good job in consistently indicating that these tests were a long way from being used in clinical practice,” Hoffman said.
Notable was STAT’s Grail’s cancer blood test shows ‘proof of principle,’ but challenges remain, which refers to the company’s “out-of-the-park goal.”
STAT quoted several independent experts including one who wondered if looking for changes in blood markers would catch cancers early enough for effective treatment and pointed out that the “true measure” of a test would be whether it led to higher cure rates.
STAT also raised the problem of overdiagnosis — detecting cancers that would never threaten health:Ideally, a blood test would not flag those cancers, since a diagnosis would send patients for more testing and, in many cases, risky treatment for no purpose. Research to determine that lies well in the future.
Also commendable was Forbes’ Biotech Firm Grail Takes The First Steps In Its Quest For A Blood Test For Cancer, which Hoffman said “gets credit for explaining the population impact of false alarms” — results indicating a potential cancer that isn’t there.
In screening, it’s critical for a test to correctly identify people who don’t have cancer, known as specificity. Even a seemingly high rate of specificity can generate a lot false alarms.
Forbes usefully showed the math:
If an eventual Grail blood test for lung cancer found 90% of lung cancers and had a specificity of 99.5%, it would still warn ten times as many healthy people as those who actually have the disease if given to everyone. That’s because only 60 people per 100,000 patients develop lung cancer. So this test would identify 54 people with cancer, and tell 500 healthy people they have cancer when they don’t.
That got to the heart of what many see as the problem with screening.
Hoffman noted that Forbes was “the only story to address the next step—a chest CT scan” and “nicely pointed out the huge evidence gap between diagnosing cancers and saving lives.”
But Hoffman disagreed with its assertion that it’s “easy to look for lung cancer” with CT scans, noting that the National Lung Screening Trial of such scans “found that 95% of the abnormal scans were false positives—and lung cancer can be diagnosed only with invasive diagnostic procedures.”
HealthDay’s Could a Blood Test Spot Lung Cancer Early? and Reuters’ Grail blood test shows promise in early detection of lung cancer had relatively balanced tones but with less sourcing and detail than STAT and Forbes.What’s the impact?
The impact of all this on consumers isn’t totally clear. DeMonaco suggested the hype might contribute to the public’s poor understanding of the value of cancer screening tests, including a lack of understanding of potential harms. “Overly optimistic reporting reduces that ability of the public to make informed decisions,” he said.
Hoffman was less concerned, although his comments suggest a mistrust of hopeful speculation.
“Given that these tests are many years from being used in clinical practice–if ever, the practical impact of uncritical coverage is pretty minimal,” he said. “I’m sure some people will be asking their doctors for these tests, but otherwise reading these stories is like going to a world’s fair and touring the model city of the future.”
[Editor’s note: This post was revised to clarify Richard Hoffman’s rationale for why a control group of heavy smokers would be useful.]
More HealthNewsReview.org coverage of ASCO’s 2018 annual meeting:
We often write about the problems arising from hyped news releases coming out of medical conferences.
But I don’t think we’ve ever written about an over-the-top news release getting toned down — and re-released — with more cautious language.
Kudos to the media team at the annual meeting of the American Society for Clinical Oncology (ASCO) for doing so with a news release featuring a clinical trial looking at whether pairing a commonly used stomach acid-reducing medicine (esomeprazole; Nexium®), with aspirin, might decrease esophageal cancer in a subset of high risk patients.
But was it too little too late? Had enterprising journalists already framed their reporting based on the first release (distributed to journalists last week) before the toned down version was released over the weekend? Would journalists miss the corrections in the flurry of conference-related communications? We may never know for sure, but some of the coverage suggests so.
If that’s the case, it serves as a compelling example of how more cautious framing of news releases from a meeting can lead to more balanced and informative news coverage.How the 1st (hyped) & 2nd (toned down) releases differ
Some highlights from the first release (that was subsequently updated and corrected):
- “High doses of Nexium and low dose aspirin can reduce the risk of developing high-grade dysplasia (a pre-cancerous lesion) or esophageal cancer, or delay death from any cause in people with Barrett’s esophagus” (a rare condition associated with an increased risk of cancer of the esophagus).
- “Although we focused this study on people with Barrett’s esophagus, we believe that any person with heartburn may want to consider taking high-dose ‘proton pump inhibitors’ [ie. Nexium] and aspirin after speaking with their doctor,” said lead study author Januz Jankowski, PhD.
- “Among people with Barrett’s esophagus, 25% of esophageal cancers prevented with high dose esomeprazole and low dose aspirin.”
How these highlights were toned down (in bold) in the second release:
- “High doses of Nexium + low dose aspirin can moderately reduce the risk of developing high-grade dysplasia (a pre-cancerous lesion) or esophageal cancer, or delay death from any cause in people with Barrett’s esophagus.”
- “Based on these data, we believe people with heartburn should talk with their doctors about their risk for Barrett’s esophagus, but they should not self-medicate with these medications, ” saidlead study author Januz Jankowski, PhD.
- “Taking a high dose of esomeprazole with low dose aspirin for at least 7 years can moderately reduce the risk of developing high grade dysplasia or esophageal cancer, or delay death from any cause in people with Barrett’s esophagus.”
The changes above acknowledge three shortcomings of the first release that had the potential to mislead readers, and even cause harm.
First, is one of scale. If a finding is minor or moderate, why not just say so? Isn’t that scale as relevant and important as ‘major or severe’? By simply adding the qualifier ‘moderate’ to the second news release, readers are now appropriately prompted to ask themselves — or their doctor — “How much is moderate?” They’re also less likely to simply accept the result as a foregone conclusion. Even better would be to document, in absolute numbers, how many fewer people developed these outcomes when they were treated or not treated with Nexium and aspirin.
Second, it’s not infrequent for us to see lead authors — not just news release writers — using unjustified or hyped language. Having the lead author tone down his language in this case was quite justified. Both Nexium and aspirin have important side effects and drug interactions to consider. Given how common heartburn is, the lead author’s comment could have easily prompted a run on both drugs.
Finally, the change in the third bullet point acknowledges an important limitation of the study results; that is, the primary outcome of this study is what’s called a “composite endpoint.” (Read more about composite endpoints HERE.)
In this case, researchers measured three outcomes of the Nexium/aspirin combo: reducing the risk of developing high-grade dysplasia (so-called ‘precancerous’ changes), reducing the risk of developing cancer of the esophagus, or delay death from any cause in high-risk patients with Barrett’s esophagus.
Lumping all 3 outcomes together can make it easier to claim a statistically significant result — because your treatment is more likely to affect at least one of the outcomes. But how clinically relevant is that when your’e left wondering: “Which outcome was affected? One, two, or three?”
Remember, the first news release boldly claimed “25% of esophageal cancers prevented” with the therapy. But they backed off in the revised release to conclude a “moderate” reduction in the aggregate sum of three outcomes. This suggests they felt the claim of a 25% reduction in esophageal cancers was misleading. But that should have been clarified with the revision.
“It’s a very unusual composite endpoint,” said Dr. Emil Lou, a gastrointestinal oncologist at the University of Minnesota who’s attending the ASCO meeting in Chicago.
“You’d think if you were studying a drug combination to prevent cancer, you’d really want to measure whether the treated group had any sort of delay in the time it took to develop cancer, when compared to a control group. With the composite outcome we can’t really know if 25% of cancers were prevented.”2 stories based on the 2 releases
This sensationalistic story from The Sun — Aspirin & Indigestion Drugs ‘can prevent cancer’ — clearly relied upon the first release. The evidence for that comes from the fact that it uses the lead author’s more reckless quote recommending that “any person with heartburn” consider the Nexium/aspirin combo.
The story is even more imbalanced than the release. It takes on a promotional and cheerleading tack in following this wildly erroneous logic: that since heartburn is common, and it can damage the esophagus, and damaged cells in the esophagus are associated with cancer … and because Nexium and aspirin are cheap … then people should “slash their risk of gullet cancer” by taking the combination.
In contrast, this much more cautious story by itv.com — Aspirin Could Prevent Esophageal Cancer; New Research Suggests — is clearly based on the toned down release because it features the more judicious quote by the lead author (ie. ask your doctor; don’t self-medicate).
It also makes it quite clear that these preliminary, unpublished results only apply to people with Barrett’s esophagus, and that aspirin does have serious side effects like internal bleeding.
I wish it had added that Nexium and other proton pump inhibitors have side effects (metabolic deficiencies, intestinal bacterial overgrowth), and also made it clear that only about 1 in 10 people with chronic acid reflux (“GERD”) develop Barrett’s esophagus. Kudos for making it clear that only about 1-2% of those with Barrett’s esophagus ever develop cancer of the esophagus.3 not-so-little changes
What I find intriguing about these two news releases is this: adding a single qualifier (“moderate”) + replacing a single hyped quote + including a single, important limitation can all add up to a potentially big difference in coverage. Although I can’t be sure the two news releases dictated two completely different types of coverage, it certainly seems possible.
And if that’s the case, it shows just how great a responsibility news release writers have to get it right the first time — before their words and framing get picked up by news outlets around the globe and shape what readers think about research that has the potential to help, or to do harm.
See more of our ASCO 2018 meeting coverage:
Editor’s note: We remind readers that HealthNewsReview.org is committed to doing more than criticize imbalanced media messages. We also offer to review any health care-related news release prior to publication and before it reaches consumers. We encourage public relations teams to take us up on this free, no-obligation service.
Nidhi Subbaraman Uncovers a Story of Medical Neglect—and of Useful Anger—on the Rosebud Sioux Reservation
BuzzFeed News reporter Nidhi Subbaraman knew almost nothing about the long and troubled history of tribal health care in the United States when she began covering the lawsuit that the Rosebud Sioux tribe was bringing against the U.S. government for its failure to provide treaty-mandated health care to tribal members. As she dug into the story during the summer of 2016, she read “seriously horrifying stories” of substandard care, neglect, and the human toll that the lack of basic medical care had taken. At hearings in Washington, DC, Subbaraman remembers, “There were people coming up to the mic and openly weeping about family members that they’d lost because, the way they saw it, they hadn’t received basic attention when they needed it.”
When she learned that the Indian Health Service (IHS)—part of the U.S. Department of Health and Human Services (HHS)—would be holding its next annual meeting in Rapid City, South Dakota, the following week, she booked a ticket to the Great Plains so she could attend the meeting, visit tribal areas involved in the lawsuit, and learn how both sides were addressing the crisis.
The trip turned out to be revealing in ways Subbaraman could not have imagined. While IHS officials mostly stonewalled, Subbaraman’s conversations with tribal health board representatives and, later, Rosebud community members uncovered a narrative of not only hurt and outrage but also resilience and activism.
“The Tribe That’s Suing the U.S. Government to Keep Its Promises” was published by BuzzFeed News on November 17, 2016. Here, Subbaraman tells TON editor-in-chief Siri Carpenter the story behind the story.
How did you end up reporting this story?
I started looking into healthcare as it affects the tribes when we got a tip from a reporter on the campaign trail, about something quite different. It was about a loophole in the Obamacare mandate, which said that tribes were required to provide health insurance for tribal members. Some felt that this was an unfair imposition on tribes, especially because many tribal members actually have access to federal healthcare.
So this is the first that I learned that many rural reservations have facilities where most or all of their members went to get basic services. But when I was reporting this story, nobody wanted to talk about the Obamacare loophole—the bigger story on everybody’s mind was the fact that the system was broken. There were all these awful anecdotal stories about substandard interactions that patients had with doctors at these facilities. And so I said, “Oh, maybe since 16 people pointed that out as a problem I should look at that instead.”
I did end up writing the other story, in June of 2016. But then quickly Googling the issue of tribal health care, I found that earlier that year, the Indian Affairs Committee in the Senate had a bunch of hearings where they had invited tribal health representatives from various reservations to testify about the state of health care on the reservations. There were videos of these hearings on the Hill. And on the one hand there were these very controlled people laying out a litany of just horrifying anecdotes; and then in these listening sessions, there were people coming up to the mic and openly weeping about family members that they’d lost because, the way they saw it, they hadn’t received basic attention when they needed it. (more…)
Are the clinical trial results for breast cancer drug taselisib ‘incredibly exciting’ or ‘disappointing’?
The recent publicity around Roche’s drug taselisib is a bit like a choose-your-own-adventure book: Depending on what news release or news article you read, you’d likely have very different conclusions about the drug’s performance in a recent clinical trial.
Presented at ASCO18, the annual meeting of the American Society of Clinical Oncology, the phase 3 trial tested whether the drug, a type of PI3K inhibitor, could slow cancer growth when added to hormone treatment for women with estrogen receptor–positive breast cancers.
The news release issued by ASCO leaned toward positive framing (especially the headline) with some caveats: The drug worked, but modestly, only halting cancer growth (known as “progression-free survival” or PFS) for about two months longer than hormone therapy alone. It also carried the “risk of considerable side effects.”
The depiction from Memorial Sloan Kettering Cancer Center, where the study’s lead author is based, was more glowing. Their PR team deemed the drug “effective.” A photo caption even tells readers “MSK Physician-in-Chief José Baselga says the new results are ‘incredibly exciting’ for improving the treatment of advanced breast cancer.”
Readers of these stories would have no idea that, in reality, the findings were so disappointing that Roche, the manufacturer, issued a statement that it is “scrapping development plans.”
“We will not be pursuing an FDA submission for taselisib based on the data presented at ASCO,” Roche said in a statement.
This takeaway was picked up by Reuters News. Readers of this story will learn right off the bat that the results were underwhelming, and later, that the trial had a high drop-out rate because many women couldn’t tolerate the side effects.
This wildly different take from Memorial Sloan Kettering vs. Reuters caught the eye of oncologist Glen J. Weiss, director of Phase I Clinical Research at Beth Israel Deaconess Medical Center:
A case of PR teams not in sync with messaging. Roche drops development of PI3K inhibitor and Cancer center announces Rx slows tumor progression…https://t.co/D31QdG5WDBhttps://t.co/velKWIXNE3 @VinayPrasadMD @Reuters_Health @oncology_bg #ASCO18 @GlopesMd pic.twitter.com/coaaRzZalA
— Glen J. Weiss,MD,MBA (@DrGlenWeiss) June 2, 2018
Stage four breast cancer patient Andrea Zinn, was following the ASCO headlines via Twitter this weekend. The Wisconsin resident said she’s learned to be cautious about trial results after realizing that many exclude men, patients with brain metastasis, and patients who have already received a lot of other treatments.‘We want more than an additional 2 months’
“The goal is to have a positive outcome so the drug comes to market–not just so patients can use it, but for profits as well,” she told me via Twitter messages.
She added, “the study was a bust in my eyes because for me, an additional 8 weeks of progression-free survival is nothing,” referring to taselisib’s lackluster performance in the clinical trial. She’d like to see news stories spend more time explaining what that means to cancer patients.
“That’s more time with family, friends and a chance to experience life,” she said. “We want more than an additional 2 months. I hardly think any drug can be counted as a success until we are getting six months or more of PFS.”
As for the headlines, Zinn said, “I feel like these studies are getting hyped up and then the results come out and so many are disappointing…now it feels like we’re back to the drawing board on research. It’s hard as the patient to feel any urgency around that.”
More HealthNewsReview.org ASCO 2018 meeting coverage:
A study generated worldwide news coverage last week for documenting an advance in artificial intelligence (AI) applied to health care. It showed that a “deep learning convolutional neural network” could be trained to differentiate cancerous melanomas from benign moles more accurately than an international group of dermatologists.
Many stories, like this U.S. News & World Report piece, suggested that AI “may serve physicians involved in skin cancer screening as an aid in their decision whether to biopsy a lesion or not.”
But none of the stories I looked at paused to ask, Is finding more melanoma definitely a good thing?Overdiagnosis: An ‘under-discussed problem’
That was the question that immediately came to mind for Ade Adamson, MD, an assistant professor in the Department of Dermatology at the University of North Carolina at Chapel Hill. He points out that the number of melanoma diagnoses among white Americans has increased some four to six times over the past 40 years, and yet deaths from melanoma have stayed constant during that period.
This suggests that many of the melanomas being detected today might be better off not being found. These cancers are so slow-growing that they would never cause a problem, he said.
The U.S. Preventive Services Task Force cites overdiagnosis as one of the reasons it doesn’t endorse routine skin cancer screening. The task force concludes that “the current evidence is insufficient and that the balance of benefit and harms of visual skin examination by a clinician to screen for skin cancer in asymptomatic adults cannot be determined.”
And yet doctors are certainly finding and treating more of these cancers every year and creating an ever-growing number of melanoma patients. Adamson believes AI-based evaluations could make the problem worse by increasing the availability of screening outside of doctors’ offices.
“Overdiagnosis in melanoma is one of the most under-discussed problems in dermatology,” he said. “Actually, some call it the ‘third rail’ of dermatology, so many don’t even mention it. It was never discussed when I was training.”
David Elpern, MD, a dermatologist in private practice in Williamstown, MA, agrees that overdiagnosis is a big problem in dermatology and sees technology as contributing to it. He spoke to the Lown Institute conference recently about changes in dermatology practice that promote unnecessary and wasteful care.
Elpern sent me this graph from the National Cancer Institute which documents the disconnect between melanoma incidence (the rising green line which indicates the number of people diagnosed with melanoma each year) and melanoma deaths (the flat dark line at the bottom of the graph indicating no change in the mortality rate).
He says there are many factors driving the increase in melanoma diagnoses.
“Pathologists are calling things melanoma that they never called melanoma 30 years ago,” Elpern said.
Elpern also points to tools like the dermatoscope, which is used to evaluate suspicious moles. He says they can pick up potentially cancerous changes before they might be detected with the naked eye, which is not always a good thing.
“The dermatoscope and mole scans can pick up very early things, and then the patient is labeled as having a melanoma and they get shunted into the system,” he said. He believes screening “creates a lot of health anxiety on the part of patients” despite the lack of proof that it’s improving outcomes.This wasn’t a ‘real world’ test
Most of the stories that I looked at, including these pieces from Men’s Health, Newsweek and The Guardian, did little more than re-write a European Society for Medical Oncology news release about the study. But HealthDay dug deeper, quoting an independent dermatologist who questioned whether the study represented real-world conditions.
That’s an issue that was also raised by David Swanson, MD, an associate professor of dermatology at the Mayo Clinic in Scottsdale, AZ. Swanson, who has consulted for a company that wants to make automated skin cancer screening more widely available through pharmacies, says the study included certain types of moles that had already been pre-sorted by humans, and that the machine was only asked to make a choice between “melanoma” or “benign.”
“The test that they did was a simple one, it’s simply a binary choice and it was very artificial,” Swanson said. “There are all sorts of things that grow on human bodies in the real world, and that study hasn’t been done yet.”Getty Images
Epidemiologists rely on all kinds of data to detect the spread of disease, including reports from local and state agencies and social media. But the decline of local newspapers makes it harder to identify outbreaks and forecast their trajectories.Article type: ScienceWriters magazineArticle topic: Science writing news
The American Cancer Society (ACS) has updated its colorectal cancer screening guidelines, lowering the recommended age to start screening from 50 to 45.
Many national outlets picked up the potentially practice-changing news with these headlines:
- CNN: Colon and rectal cancer screenings should start at 45, new guidelines say
- NBC: Colon cancer screening should start at 45, Cancer Society says
- AP: Cancer group says colon screening should start at 45, not 50
- Washington Post: Colorectal cancer screening should start at age 45, not 50, American Cancer Society says
Why is the ACS recommending that people get screened at a younger age?
The rate of colon cancer in younger people is rising, according to the stories, all of which featured some version of this quote from NBC’s coverage:
“People born in the 80s and 90s are at double the risk for developing cancer of the colon and four times the risk for developing cancer of the rectum compared to people born decades earlier like the 40s and 50s,” said Dr. Richard Wender, chief cancer control officer for the American Cancer Society.
“We’re actually seeing colorectal cancer developing in people in their teens, which is something that was extraordinarily rare in the past, and it’s all too common today,” Wender told NBC News.
Missing from all of these stories, however, is any quantification of the actual rate of colon cancer in these groups, which might help readers understand what the ACS spokesman means by “all too common.”
As the New York Times noted last year, a person who was born in 1950 had a three in a million risk of developing colon cancer in their twenties, compared with a five per million risk for someone born in 1990. The risk of rectal cancer for someone in their twenties increased from 0.9 per million for those born in 1950, compared with 4 per million for someone born in 1990.
Those increases are in the same ballpark as the risk of being struck by lightning.
For comparison, the incidence of colon cancer in those over age 50 was 119 per 100,000 in 2013 — several orders of magnitude higher.A modeling study is not a clinical trial
Perhaps more importantly, few of the stories I looked at raised any concerns about the evidence supporting the new guidance, even as they noted that other professional groups are sticking with their current recommendations to start screening at age 50.
Kenny Lin, MD, MPH professor of clinical family medicine at Georgetown University, offered a counterpoint to predictions that the new guidance would save lives.
“The rationale for screening at an earlier age is that the incidence of colorectal cancer is higher [than in the past]… so there are more cancers to be found by screening,” he wrote in an email. But he pointed out that this rationale makes some assumptions — notably that the cancers being found in younger adults behave the same way, and can be treated as effectively, as those in older adults. It also assumes that outcomes are better when these cancers are found via screening, before they start causing symptoms (e.g. rectal bleeding).
“If either assumption doesn’t hold true, then earlier screening could fail to improve colorectal cancer mortality in real life, no matter what the models say,” Lin said.
Richard Hoffman, MD, MPH, director of the Division of General Internal Medicine for the University of Iowa Carver College of Medicine, pointed out another assumption baked into the guidelines — that patients will follow the ACS screening recommendations down to the letter and seek follow-up screens at the appropriate intervals.
“Given that we are being told that only 2/3 of adults 50 to 74 are adherent [with screening recommendations], this raises questions about the potential effectiveness of screening younger patients, especially with uncertain insurance coverage,” Hoffman said.
Internists Pieter Cohen, MD and Michael Hochman, MD raised other concerns in their Updates in Slow Medicine email newsletter, noting the data wasn’t from a clinical trial.
The change … is not based on the results of a new clinical trial but rather modeling studies based on increasing prevalence of colorectal cancer among US adults in their 40s. The updated guideline encourages clinicians to discuss different screening modalities with patients, but, unfortunately, does not suggest counseling patients that there are a variety of expert opinions on when to start screening and that beginning screening before age 50 has known risks but only theoretical benefits.Little attention to harms
Although there are several ways to screen for colon cancer, some professional groups, including the American Gastroenterological Association, endorse colonoscopies over other methods. But is this the safest approach? Cohen and Hochman point to recent data that shows “you are about 8 times more likely to end up in the hospital within a week of your screening colonoscopy than you are to be saved from colon cancer death over 10 years.”
USA Today was one of the few outlets that called attention to these potential harms, which include bowel perforation and complications from anesthesia. It also featured an extensive discussion of costs, and noted the ACS recommendation was “qualified” due to limitations in the evidence. According to an ACS guideline author, this means that “we hope that doctors will look at this and at least start discussions of colorectal cancer screening with their 45-year-old patients.”
However, Hoffman wondered whether clinicians have enough data to make these kinds of discussions meaningful. He noted that truly personalized decision making “requires informing patients about the benefits and harms of early screening and it’s not clear that we have sufficient clinical data to support these decisions.”
To their credit — and reflecting the emphasis in the ACS news release announcing the guidelines — most stories generally did a good job of discussing noninvasive colorectal cancer screening options like blood and stool tests.
But overall, few outlets challenged the narrative that more lives would be saved with an earlier start to screening and that the benefits would outweigh the harms. Those claims are speculative and may be plausible, but they are not yet proven. Some experts believe the attention focused on younger patients could be more effectively channeled elsewhere.
“Something like 1/3rd of the population age 50-75 isn’t up-to-date on any method of colorectal cancer screening,” Lin said. “The benefits of extending the start-screening age by 5 years, even if they exist, pale compared to the potential benefits of getting more people in the universally agreed-upon age range screened.”