Medical Miracles or Misguided Media?

There were times last year when the casual consumer of mainstream news could have been forgiven for thinking that cures were suddenly being found for an uncommonly large number of the world’s health problems.

In July, the lead story on ABC’s “World News Tonight” touted the results of research on mice as “the very best news there has been in many years, perhaps ever, about . . . Alzheimer’s disease.”

In August, the St. Louis Post Dispatch and the Milwaukee Journal Sentinel, among others, published Page 1 stories saying that experiments with mice on low-calorie diets could, as the Journal Sentinel story put it, “lead to anti-aging, life-extending drugs” for humans.

In September, Time magazine published a cover story and the Washington Post and the Los Angeles Times--among many other newspapers--gave Page 1 play to a story that said scientists had created a “smarter” mouse, a step that could lead, various reports said, to “creating baby Einsteins,” “boosting human brain power,” “improving human memory” and treating stroke and “human learning disorders.”

It sometimes seems as if there are Page 1 stories, television news reports and magazine cover stories almost daily on medical breakthroughs--new treatments for everything from the flu, obesity and the common cold to cancer, AIDS and heart disease. In the last two weeks alone, Newsweek published a cover story on new hope for Alzheimer’s patients, the Los Angeles Times published three Page 1 stories on new treatments for AIDS and New York magazine ran a cover story touting not only “a global conquering of cancer in five to 10 years” but “breakthroughs in pain management, AIDS research, heart surgery, and more.”

“The media want to have something new . . . something that will catch the public’s eye,” says Dr. Dennis Slamon, the director of clinical research at UCLA’s Jonsson Cancer Center, “so it can’t just be ‘progress has been made.’ . . . It’s got to be something really splashy and sexy.”

The news media have become ever more “splashy and sexy” on virtually every subject they have covered in recent years as they struggle to reverse declining circulation in an increasingly competitive and clamorous marketplace. But that approach is particularly risky--indeed harmful--when applied to new treatments for deadly or debilitating diseases. Studies have shown that the news media are the primary source of health news for many people, so when stories on new treatments are exaggerated, they are not only inaccurate, they are harmful. Doctors say that many patients demand a treatment that they have learned about from the media, even when that treatment has not been proved effective and other, more effective treatments are available.

Exaggerated claims about new treatments also raise false hopes and expectations among those suffering from the disease and their loved ones, and that’s “a cruel hoax,” says Robert Bazell, chief science correspondent for NBC News. The dashing of false hopes often leads to widespread confusion, cynicism and depression; some patients may lose faith in all traditional medical treatments and resort instead to much riskier experimental therapies.

Moreover, coverage of purported medical breakthroughs may have serious social and political implications. Stories on cancer cures that turn out not to be cures have contributed to a drumbeat of coverage about the disease that leaves people with the fearful impression that we are in the midst of an epidemic; in fact, death rates from cancer have been declining steadily since 1990.

“No disease has been ‘cured’ as repeatedly as cancer has,” says Rick Weiss, who covers science and medicine for the Washington Post.

‘Too Few Caveats’

Cancer does not kill as many people as heart disease, but the excruciating pain and wasting away that often accompany cancer make it the disease that people dread most, so perhaps it’s not surprising that it’s the disease most frequently “cured” in the media. A little less than two years ago, for example, the New York Times triggered a worldwide media frenzy with a Page 1 cancer “breakthrough” story that featured a quote about curing cancer in two years.

In the mid-1980s and again in the early ‘90s, new treatments for AIDS--a disease long regarded as inevitably fatal--were also greeted by the media with “too much euphoria and too few caveats,” in the words of Marlene Cimons, who has long written about AIDS and other public health issues for the Los Angeles Times.

That coverage contributed significantly to a widespread complacency among those most at risk for AIDS, says Daniel Zingale, former executive director of AIDS Action in Washington. “They became more lax in their personal sexual behavior, they slackened their vigilance, because those headlines made them think AIDS was [curable].”

On some other diseases, the media often misunderstand or misinterpret basic science information, so they “tend to exaggerate the implication of a study in animals and immediately assume that the finding is relevant to people, which is a big stretch in many cases,” says Dr. Jerome Kassirer, former editor of the New England Journal of Medicine.

One of the telltale signs of Alzheimer’s disease, for example, is the formation of amyloid plaques that clog the brain. The ABC story reported that scientists had developed a vaccine that prevents the formation of plaques and dissolves existing plaques in mice. That was good, solid scientific research. Mice, however, don’t get Alzheimer’s disease. The mice used in this research had been genetically engineered to produce the plaques; they developed no other Alzheimer’s symptoms. Moreover, scientists are not even certain if plaques are a cause of Alzheimer’s disease or a result of the disease.

The ABC story did include a few brief, obligatory caveats, but the overriding message was one of excitement over a major breakthrough, and “the minute you package it as a breakthrough or even suggest that it might have something to do with humans, you’ve over-hyped it,” says Philip Elmer-Dewitt, assistant managing editor in charge of medicine, science and technology coverage at Time.

Cultivating the Media

Nevertheless, stories about medical cures and breakthroughs have become a staple in the nation’s news media--in part, no doubt, because we have become a more health-conscious society, more aware of and more anxious about calories and caffeine, cholesterol and cancer, everything that could affect our well-being and longevity. At the same time, there has been genuine progress in research laboratories; medical science is moving forward at a rapid rate on many frontiers. But not that rapidly--or that dramatically--and rarely do the media go back and look at the last breakthroughs they heralded to see if they have fulfilled their promise.

Overstated accounts of medical findings can create a misguided or premature groundswell of public support for--or against--government and corporate funding of certain treatments and research priorities.

“We can impede our understanding of a disease . . . misdirect our resources . . . waste 10 years worth of money and energy,” says David Murray, research director of the Statistical Assessment Service, a nonpartisan agency based in Washington.

Zingale says that donations to AIDS organizations have declined significantly since 1996, and federal spending on HIV prevention has stagnated, in large measure because “medical breakthroughs--the first generation of effective AIDS treatments--were overstated in a way that wrongly implied ‘cure’ to many Americans.”

Why are the implications of medical findings so often--and so egregiously--overstated in the mainstream news media?

One answer is that advocates for various patient groups have become more assertive in their approach to the media, and they have created a journalistic appetite--and a political imperative--that sometimes distorts the coverage of purported medical breakthroughs. After decades of neglect, breast cancer and its treatment have often received front-page play in recent years, but colorectal cancer will probably kill more people this year than breast cancer, and yet the media barely noticed--and in many cases ignored altogether--the Food and Drug Administration’s approval in 1996 of a new treatment for colorectal cancer, the first such treatment to win full FDA approval in more than 40 years.

Eager for acclaim or research grants or both, anxious to satisfy their university’s publication requirements or simply carried away with enthusiasm over their discoveries, scientists are often responsible for exaggerated reports on their findings. Ego plays a major role in this process. Natalie Angier of the New York Times says a prominent scientist once told her that the only recognition more important to a scientist than winning a Nobel Prize is getting his name on the front page of her paper.

In the case of government scientists--those, say, at the National Institutes of Health or the National Cancer Institute, among others--this temptation toward exaggeration may prove particularly irresistible when their budgets are coming up for congressional approval. Like some advocates for patient groups, they think that if the public--and the politicians--believe their tax dollars are producing results, they will be more willing to provide more tax dollars for more research.

As pharmaceutical companies and others in private industry increasingly sponsor medical research, scientists may also overstate their findings because they want to announce a discovery they can patent and benefit from financially.

“A lot of research is exaggerated, and that’s particularly likely, I believe, for industry-sponsored research,” says Marcia Angell, editor in chief of the New England Journal of Medicine. Universities and other research institutions may be similarly guilty, she says. “They know increased publicity can be parlayed into increased prestige and, often, increased funding.”

Medical researchers, the companies and institutions that finance their work and hospitals competing for patients have all become much more aggressive about marketing and media relations in recent years, putting increased pressure on medical writers trying to sort self-serving hype from legitimate hope.

“Scientists have become . . . masters of the sound bite. Scientists have learned how to package information for journalists so they can get the attention they want,”says Dorothy Nelkin, who wrote the book “Selling Science: How the Press Covers Science and Technology” and who teaches courses in science and society at New York University.

In recent years, scientists have used such pop culture terms as “Doogie Howser” (to name a mouse), “Sonic hedgehog” (for a gene) and the “werewolf syndrome” (for a medical condition); that, too, has helped bring added media attention to those research projects.

“You do something cute, you do something clever, you sell it a little bit hard, you give us what you think we want--and to some extent we do want,” says Rick Weiss of the Washington Post, “and you can launch yourself onto the front page.”

Medical writers everywhere say there has been an explosion in the number of medical public relations firms in recent years. “We’re now being bombarded by PR people trying to push things--’breakthroughs’ by their clients--mostly because of the profit motive,” says Susan Okie, Weiss’ colleague at the Post. Some publicists specialize in providing local television stations with ready-to-air video touting their clients’ drugs. “There’s a much greater attempt to manipulate reporters now,” Okie says. “They call and fax and e-mail us and tell us, ‘This is going to be very big. We have a teleconference tomorrow. The Mayo Clinic researchers will be there. We’ll have these experts available.’ ”

Okie is a medical doctor as well as a journalist. So are Lawrence K. Altman at the New York Times, Timothy Johnson at ABC News and several other medical reporters around the country. Many medical reporters--including a number of those who work for the country’s top newspapers and newsmagazines--either have graduate degrees in science or have enrolled in special programs on medicine or science. Johnson has argued that medical writers should be required to study enough about medicine to “pass some sort of reasonable examination to prove one’s knowledge,” but most journalists object to any kind of mandatory certification or licensing process, and indeed many are the beneficiaries of prolonged on-the-job training. They have simply worked so many years in their specialties that they have developed a certain level of lay expertise about medicine. These savvy medical reporters are not easily manipulated. Thus, many researchers say that despite its manifest shortcomings, medical reporting is generally much better today than it used to be, at least in the major cities. More newspapers and magazines have more and better qualified medical reporters serving a more sophisticated audience than was the case 25 years ago, when there were no medical or health sections in the nation’s newspapers, and few papers had more than one medical reporter, if that.

Lack of Experience

Even in optimistic accounts of medical research, the better reporters are careful to include caveats--what journalists call the “to be sure” paragraph. Thus, Newsweek’s Jan. 31 cover story on Alzheimer’s disease was billed as “How Science Is Offering New Hope,” but it acknowledged, “Alzheimer’s is still hard to predict. And today’s treatments provide only modest symptomatic relief, if that.”

But many people who cover medicine are relatively inexperienced, general assignment reporters for local newspapers and television stations; they have little time or space to report or tell their stories and they often lack even a rudimentary understanding of the issues they are covering.

Rich Elbaum, assistant vice chancellor for communications at UC Irvine, says some local TV reporters come to the university to report a medical story on their way back from covering an industrial fire in another part of the county. He recalls one reporter who showed up to report one of the first liver transplants and, after talking to the patient, was starting to “go live” with his report when he suddenly remembered to ask Elbaum an important question: “People have two livers, right?”

Elbaum just shook his head and said, “No--one.”

On local television in most cities, competition exacerbates the problems of ignorance and inexperience. Under pressure to deliver ratings, news directors urge reporters to file human interest stories that are short, snappy, uplifting and, if possible, sensational; devoid of either caveats or context, the result is often the equivalent of “AIDS Cured--Film at 11.”

The newest and fastest-growing communications medium, the Internet, can be even more irresponsible--and more dangerous. Anyone with a modem can create a Web page on health, medicine or anything else. Typing in the word “medicine” on just one Internet search engine produces 3,643 separate Web sites; try “medical” and the number of Web sites jumps to 12,710; “health” yields 20,904. Although most of these sites lack the peer review required by medical journals and the editing available to most mainstream journalists, they may still appeal to desperate patients eager for any possible solution to their medical problems.

‘There’s a Pressure’

But even sophisticated, responsible journalists, working for respected mainstream news organizations and writing about the research of scientists determined to be equally responsible, often overstate the implication of the findings they are reporting and ignore or minimize the caveats and potential downside of a new treatment.

“There’s pressure to find exciting things and maybe even to emphasize the most exciting aspects of stories and maybe not paying as close attention as we might to ambiguities or caveats,” says Michael Lemonick, a science writer at Time magazine.

This may be the inevitable byproduct of the inherent conflict--the culture clash--between science and journalism.

Science is both a methodical and a somewhat messy process, a gradual exploration of the unknown. It moves slowly, with each study building on the one before it--brick by brick by brick. Most discoveries are partial improvements, steps forward (or backward), subtle gradations and even contradictions. There’s seldom a true end point in science. Almost invariably, the breakthrough that’s published today is the final stage in a series of studies that began years, perhaps decades ago, and it, too, may still be subject to revision by future studies. Genuine breakthroughs, giant leaps forward--penicillin, for example, or the Salk polio vaccine--are rare.

“We could probably ignore 99% of the science news in a given year because its intrinsic value won’t be known [for many years] or may not be that great,” says Joe Palca, who covers science and medicine for National Public Radio and is president of the National Assn. of Science Writers.

In the late 1980s, the media treated each discovery of a gene responsible for one disease or another as a breakthrough, and these discoveries occurred with such frequency that many medical writers took to calling their coverage “the gene of the week syndrome.” Identifying a gene was supposed to lead to genetic therapy--injecting healthy genes into the human body to replace damaged or defective genes and so cure or prevent any number of deadly, inherited diseases. That has not happened yet, and indeed last November, the Washington Post disclosed that six people had died in gene therapy experiments since February 1998.

“We all overplayed early gene therapy developments,” says Joel Greenberg, the editor in charge of science and medicine coverage at the Los Angeles Times.

The problem with trying to cover new developments in medicine, says Dr. Richard Klausner, director of the National Cancer Institute, is that “The whole concept of a breakthrough is often in the eyes of the beholder and is very difficult to quantitate. Often there is confusion . . . a lack of distinction between a scientific advance and a medical breakthrough.”

Avoiding the ‘B-Word’

How big does an incremental advance have to be to qualify as a “breakthrough”? That may depend on when in the scientific process--where on the research continuum--the incremental advance occurs. In football, an incremental gain of one yard on a team’s own 20-yard line doesn’t usually mean much; but that same one-yard gain on the opposing team’s one-yard line is a breakthrough--a touchdown. Too often, the news media treat incremental scientific advances as touchdowns. Although the major newspapers and newsmagazines increasingly provide coverage of new trends and analyses of developing stories, news is still their primary responsibility. That’s why they’re called newspapers and newsmagazines. They devote enormous resources to the coverage of discrete events--wars, trials, elections, earthquakes, games--all of which have measurable outcomes and immediate implications; something just happened--someone said or did or won or lost something--and that’s news.

News is a product, not a process, so journalists want results that are “definitive, dispositive and closed . . . today [by] 3 p.m.,” says David Murray of the Statistical Assessment Service.

Top medical writers at newspapers like the New York Times, Washington Post and Los Angeles Times sometimes try to avoid overplaying new scientific discoveries by relegating them to roundup columns on inside pages in their weekly health and science sections, rather than writing long, separate stories for the main news pages.

But “the reality of a reporter’s life is that you only exist if you’re on the front page,” says Robert Lee Hotz, a science writer at the Los Angeles Times, “and there are several magic catchwords you can use to ensure that you get on the front page.”

Although “cure” and “breakthrough” are the most likely passports to Page 1, Hotz says “one step closer to solving” and “on the threshold of” are among several other phrases guaranteed to get an editor’s and reader’s attention.

Hotz says that most experienced science and medical writers try hard not to use those words inappropriately. Some even deride “breakthrough” as “the B-word.” But Deborah Blum, former medical writer for the Sacramento Bee who teaches science writing at the University of Wisconsin, says journalists realize that if they “use all the necessary qualifiers and make it clear to readers that the study you’re writing about is limited and further studies are necessary and there won’t be any medicine available for years and ‘caution, caution, caution,’ you’ll find your story back next to the classified ads.”

Urging Caution

Responsible reporting is often the casualty of a conspiracy of interests--scientists wanting to promote their discoveries by talking to journalists who want to impress their editors and engage their audience.

Experienced medical writers are acutely aware of the impact their stories can have on readers, and for that reason, many say they spend less time trying to write their stories onto Page 1 than they do trying to persuade their editors that a given story does not belong on Page 1--or on the cover of their newsmagazine or in a prominent position in the nightly television newscast.

“I know a lot of medical writers who have to fight editors [who] say, ‘I can get you on the front [page] if you can say thus and so,’ ” says Boyce Rensberger, director of the Knight science journalism fellowships program at MIT and former science writer for the Washington Post and New York Times.

At most major news organizations, medical stories moved by the wire services are routinely referred to the medical writers, who often urge caution, saying that the story is not new or important or definitive or that it could be alarmist or misleading.

Editors and news directors, not reporters, make the ultimate decision on what stories are published and broadcast and on how they are played. Most news executives say they usually listen to their in-house specialists on stories in their areas of expertise. But they find some medical stories so compelling--or so prominently and heavily played in other media--that they insist their reporters do the stories, too, even if the findings have been exaggerated, if only to put in context the news reports that readers and viewers may have seen elsewhere.

Sometimes, however, it’s not the fault of either the reporter or his boss that there are so many stories of the sort that Rensberger used to characterize with the mock headline “New Hope for the Dead.” Sometimes the fault is not in the way the story is presented but in the way it is perceived.

People who are suffering from a deadly disease or who are close to someone in that situation are desperate for help and often ignore any caveats or qualifiers included in a story about a potentially promising treatment, no matter how carefully and responsibly the story is written and presented.

Laurie Garrett, a medical reporter for Newsday in New York, says she worries so much about how readers will react to her stories, especially those about cancer treatments, that “I try to deliberately write in very neutral tones. I tend to avoid adjectives altogether. I almost dry it out, make my writing bland so that whatever emotional baggage the reader brings to the story in the first place is not going to get exaggerated by . . . the tone with which I deliver the information.”

Christine Gorman of Time remembers arguing with her editors several years ago when they wanted her to write about a particular cancer study. When the editors insisted, Gorman reluctantly wrote the piece, taking special care to make clear the early, tentative nature of the research and emphasizing that no drug had yet been developed.

She still received a “heartbreaking letter from a teenager in Northridge . . . who found out that her mother had metastatic lung cancer,” Gorman says. “She said she was writing to ask me where her mom could get ‘that new drug you wrote about.’ I was crushed.” Gorman says she reread her story to be sure that she I hadn’t overstated the research. She hadn’t. “But when your mom has metastatic lung cancer, you’re going to grasp on any hope there is.”

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Smarter Mice, Smarter People?

Medical research studies based on mice often get big play in the nation’s news media. Scientists worry that journalists sometimes exaggerate the implications of animal studies and mistakenly assume the findings are relevant for humans.

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Big News, False Hopes

Stories on medical “breakthroughs” sometimes seem to be a staple in the news media. Reports on new treatments for cancer, AIDS and Alzheimer’s disease receive particularly optimistic attention. Many doctors--and some journalists--worry that the hype sometimes falsely raises the hopes of those suffering from the diseases.

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Next: Medical journals and secondhand journalism.

Jacci Cenacveira of the Times editorial library assisted with research for this story.