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From AIDS to SARS: the media and emergent disease

July 20, 2010

Every reporting beat has that one event, or set of events, that thrusts it into the spotlight. The stories, regardless of what else is going on in the world, dominate the front page. For the political reporter, it’s an election or a scandal. For the police beat, it’s a serial killer or abducted child. For health reporters, the time when they are needed most, and when they need to perform their best, is during the onset of an emergent disease.

I aim to show that, for a number of reasons, major news outlets do a consistently poor job at these crucial times. The argument will cover three major fields: the reporting styles used, differing ideas of the role of the media, and how there seems to be a lack of learning from previous mistakes on a large scale.

The media under analysis in this paper are the Globe and Mail (henceforth, Globe), and the New York Times (henceforth, Times). These outlets were chosen because they are generally considered to be high quality newspapers. There is no sense basing an argument on the performance of a tabloid who aims at nothing more than sensationalism. The point being, if the flaws I will discuss appear in the ‘better’ newspapers, then it can be assumed the less rigorous outlets make similar mistakes.

The diseases under discussion are AIDS (acquired immune deficiency syndrome) which emerged around 1981, and SARS (sudden acute respiratory syndrome) which emerged in March, 2003.

The Globe and the Times were also selected because they represent the seat of where the diseases emerged most strongly. Despite the idea that San Francisco is most strongly associated with AIDS, New York City had the highest rate of the disease in the United States. The same is true in Canada with SARS and Toronto. The significance of this relationship is that the reporting being presented in these two locations directly relates to the health of the readers.

The analysis of journalistic style will be further broken down into three categories of decreasing severity.

The first is the problem of language use. This problem is chiefly one of context. At the beginning of a new disease, the language used should be clear, free of jargon, and void of dramatics. While this could be said of journalism in general, it is of special significance at these times.

The following was published in the Times in 1983.

Medical detectives are calling it the century’s most virulent epidemic. It is as relentless as leukemia, as contagious as hepatitis, and its cause has eluded researchers for more than two years. Acquired immune deficiency syndrome, or AIDS, was first seen in homosexual men – particularly those who were promiscuous – but it has now struck so many different groups that its course cannot be predicted.

…The AIDS patient may survive his first bizarre infection, or his second, but he remains vulnerable to successive infections, one of which is likely to kill him.1

The language used in this piece is clearly dramatic, and goes far beyond the purpose of alerting the public to a new threat. At this point, the population isn’t informed, they’re scared.

Another style of journalism which produces little more than fear is the feature. This is especially true of those with a softer style including scene setting, characters, etc. The purpose of using this style is to grab and hold the reader’s attention.

One such simplification is the tendency to construct stories around individuals and personalities, rather than structures and social forces. While this personification might illustrate deep cultural ideals about individualism, it is also an attribute of storytelling whereby readers are drawn into the narrative through “identification” with another person.2

One example of this stylistic technique gone wrong is in a Times piece on SARS, released within weeks of the initial outbreak.

On March 14, a worried father wheeled his adult son into the emergency room of Presbyterian Hospital here. The younger man was gasping for breath.

Ten minutes later, the nursing staff discovered that the young man went through Hong Kong recently. ‘’He was a remarkably healthy-looking guy,’’ said Pete Herendeen, a registered nurse who first examined the patient. ‘’But he was acutely ill. Right away we had the sense that this might be an extraordinary case.’’3

The problem with stories like this is they provide little new information, while exacerbating fear through the imagery used. This story specifically played off two conventional fears: a healthy person is being struck down during their prime, and a parent is unable to protect their child. These are very strong themes which would relate strongly to many readers, but they also work to over-dramatize the situation.

Another main language issue is jargon; both media created, and technical. “Media terms for AIDS have ranged from “black death” and “scourge of the twentieth century” to “lethal pandemic unparalleled in human history” and the ever-present “plague.””4 The catchy phrases coined to grab the reader’s attention, or complex scientific terms, add little to the discussion.

Cutting through the technical talk also helps the reader, who is likely already worried, to better understand the disease. When the Times said,

Coronaviruses have a singular talent for recombination — for absorbing bits of stray genetic material. One day, virologists warn, that tendency might suddenly turn a benign coronavirus into a deadly one.

”It has the highest frequency of recombination that we know of for any positive-strand RNA virus,” said Dr. Susan C. Baker, a virologist at Loyola University in Chicago.

”With high-frequency recombination, you always have potential for a new virus to emerge.” Now, she added, ”it looks like it’s happening.”5

the science likely went straight over the heads of anyone lacking advanced education in microbiology. But, all of the jargon makes the process of recombination, itself completely harmless, sound menacing. And thus, SARS became menacing.

The language use problems highlighted are the least significant of the style issues in the reporting of AIDS and SARS. Tone and angle are subjective, and open to preference.

A more serious infraction is because of bad science reporting. Misinterpreting numbers, the conclusion in a study, or having an ill understanding of what makes a finding significant goes far beyond making the reader worried. It causes them to be misinformed.

In 1983, the Times ran an article with the title “Research Traces AIDS in 6 of 7 female partners.” In the body of the work, however, it read,

A study of seven female sexual partners of men with acquired immune deficiency syndrome, or AIDS, suggests that the disease may be sexually transmitted between heterosexual men and women, according to its authors.

Of the seven women in the study, which was reported in today’s issue of The New England Journal of Medicine, one developed the disorder, another appeared to be in early stages of developing it, four had abnormalities linked to the syndrome and one was healthy.6

The headline and text of the article are in conflict. One reported a 6 out of 7 relationship, and the other a 1 out of 7 ratio of confirmed cases. The headline greatly exaggerated the results of the study, giving the reader a distorted sense of risk.

Much later, Candace Gibson wrote some advice for how to cover emergent diseases.

As it took time for a reliable test for the SARS virus to be developed, cases were designated as ‘suspect’ until they could be confirmed or considered “probable” SARS. Reporting on the number of suspected cases greatly inflated the number of “real” cases of SARS and made the epidemic look much worse than it was.7

This example represents how the misinterpretation of findings can skew a reader’s understanding of the disease.

Another way that AIDS was handled improperly is when journalists failed to accurately represent the numbers they used. In 1983 the Times ran an article where the reporter wrote, “[AIDS] has become the second leading cause of death among haemophiliacs.”8 The article was accompanied by the headline “Disease Stirs Fear on Blood Supply”. It wasn’t revealed until much further down in the article that,

It has taken the lives of eight of the 70 haemophiliacs whose deaths were reported last year, Dr. Evatt said… [and] about 15,000 haemophiliacs live in the United States.

The actual severity of the issue, eight deaths out of a possible 15, 000 who could have been afflicted, does not warrant the alarming headline. The finding that such a small percentage of the population of haemophiliacs developed AIDS, presumably from blood transfusions, is unlikely to be statistically significant. Further, it is irresponsible to assume the reader will get so far through the piece to finally get some context.

There is one other way that reporters misrepresented the science that I will discuss here. Sometimes, journalists will, in the attempt to find a new angle, report something prematurely. The Globe in 1986 ran the following lead,

Scientists are not sure whether mothers can pass on the deadly AIDS virus through breast milk, and infected mothers in different parts of the world are consequently receiving conflicting advice on whether to breast- feed.9

In the heart of the emergence of a new disease, the reporting of “maybes” is highly irresponsible. The readers need useful information, not hopes or unfounded worries.

These misrepresentations are serious, as they lead to a distorted understanding of the state of events. They could, however unfortunate it may be, be blamed on the complexity of the subject matter. In his analysis of the quality of AIDS coverage, James Kinsella wrote,

Science and medicine have been the stepchildren of news organizations, often covered by poorly trained, poorly educated reporters. In large part because of the lack of expertise, outbreaks of disease are treated haphazardly by the media.10

There is no prerequisite for a health reporter to have a background in medicine, or even science in general. And so, these types of errors can be expected.

This seeming contradiction (reconstituting something in order to simplify it) captures the elaborate process of newswork-through the application of everyday work rules, occupational standards, technical possibilities, and professional judgments, complex events and forces become simplified into news stories. And when the original information is both precise and complex, as in the case of news about science, then these newswork practices can result in serious distortions.11

When the reporter doesn’t have a firm education in the field they are covering, and they are in a hurry to meet deadline, they can cause misrepresentations of the facts.

What can never be tolerated, however, is bad journalism. Lack of balance, or misplaced authority, can wreck havoc on a population struggling to understand a situation which is beyond their control.

Colby & Cook, in a study of the television coverage of AIDS on the three major U.S. networks, agreed that this attempt to get “both sides” of an issue led to confusing stories and the dissemination of inaccurate information: “Reporters, hewing to the strategic ritual of objectivity, never specifically rebutted these misleading statements, apparently considering it sufficient to mix alarm with reassurance from public officials”.12

As was mentioned, these kinds of infractions can almost be expected from some news outlets. But, the Globe and the Times, as examples of good outlets, should be above such errors.

The Globe ran the following article,

Used by God during attack on gays, police chief hints

The Chief Constable of Greater Manchester may seem to some an unlikely amplifier for the word of God but, when the subject is AIDS and the lifestyle of homosexuals and drug users, there are many in Britain who think the burly, bearded officer may indeed be His Master’s Voice.

Last month, James Anderton roused intense passions when he said, during a public speaking engagement in Manchester, that the vast majority of victims of acquired immune deficiency syndrome were ”swirling around in a human cesspit of their own making.”

A sometime Methodist lay preacher, the 54-year-old chief constable argued that faith in God could produce miracles, but by the same token the act of forsaking God’s rules in human relations also produced results, and AIDS, a disease transmitted through some body fluids and for which there is no cure, is only ”the most recent and dramatic”.13

Throughout the 680 word article, the reporter did little other than call the chief’s statements “controversial.” The fact that a police chief uttered the words gives a false sense of authority to his statement. The reporter should have balanced him out, or ignored him altogether.

As should be obvious, this type of reporting does little to help the reader understand the disease.

All of the stylistic and reporting problems can be accounted for, if you consider the role of the media during a health crisis.

The media surely supports many different functions during such time periods, but the real question is – which ought they perform?

In a 2006 study,

National Post health reporter Tom Blackwell countered that “our goals are not always the same. We are there to tell stories, not to carry public health messages as a vehicle. But we can work together and each achieve our goals.”14

This account conflicts sharply with the idea that the role of the media is to provide the population with accurate information, such that they can make informed and responsible decisions.

The main problem with Blackwell’s goal of storytelling is that it is irresponsible.

The most common point of consensus among those who have studied the early media coverage of AIDS in North America is that much of society’s understanding of the disease, who it affects, and its future possibilities, comes from the media. The press is claimed not only to mirror the confusion within society, but is often credited for generating it in the first place. 15

If the media plays such a vital role in shaping the populations’ understanding of a disease, then it should give up the storytelling, at least for a while, to provide a reliable account. The main reason that news organizations likely don’t feel the same way is because of a difference in perception on what is newsworthy.

The idea of storytelling in news is a tool to get the reader interested in the information you have to provide. With an emergent disease, however, a person’s well documented inability to accurately rationalize risk kicks in. This renders the tool of storytelling unnecessary in the goal of getting people information.

… C.D.C. officials emphasize that most Americans do not have to worry about catching the disease… [I]ncreased public outreach does not appear to have quelled the furor.

What drives some of the less-than-rational fears over the illness, medical experts say, are both a lack of understanding among the public of how infectious diseases are spread, and an enduring human suspicion, no matter how much we may understand intellectually, of things we cannot see.

… Most people may know that the number of deaths due to infectious illness has dropped sharply, from over 90 percent before World War II to about 5 percent today. But for reasons that are themselves also largely irrational, risks that are new and exotic also tend to draw more fevered concern than those that are more dangerous.16

The misinterpreted risk to their health will be more than enough to grab the average reader’s attention. The storytelling tool, and thus some of the common mistakes highlighted in the first party of this essay, is unwarranted.

The role of the media during a health crisis should, at least at the early onset of an emergent disease, resemble the public service that Blackwell decried.

Unfortunately for news outlets, however, the transition between their current state and where they ought to be is not so clear cut. “In the SARS crisis, the media was a key tool used by stakeholder groups to advance their agendas.”17 The stakeholders here are corporations, political parties, advocacy groups, or anyone else who has something to gain from increased media presence.

In the case of SARS, the discussion quickly became politicized. While this type of transformation is inevitable, the coverage should, to best serve the public, remain firmly planted on the scientific and medical issues. The readers need to know how to take care of their health.

In a crisis situation where every major stakeholder has a media management strategy, it is naive to argue that the press simply reports the news as it unfolds.

Media organizations must consciously choose where, when and how to divide their attention among the various stakeholder groups. In choosing how to divide this attention, the press plays a proactive role in defining the nature of the crisis and which of its aspects are important at each stage.

The cumulative decision making that formulates press coverage, in effect, defines the nature of crisis itself.18

The reason for the focus on health is because, if the papers drift too far into the realm of politics, they will quickly become the stage for funding battles.

The amount of funding which is allocated to a research organization depends strongly on their ability to market their cause. This situation can cause those teams to make over-dramatic statements to hopefully catch media attention, and maybe secure funding.

The Globe ran the following article,

The U.S. National Academy of Sciences, warning that AIDS threatens to kill 50,000 Americans a year and lamenting ”woefully inadequate” programs to cope with it, said yesterday a national commission on the syndrome should be established.

… The committee said the United States should be spending about $2- billion (U.S.) annually by 1990, most of it new federal money, in an effort on several fronts to thwart AIDS.19

Attempts to use the media for personal gains can be considered a potential cause for some of the dramatics seen in the headlines.

Unfortunately, the issues outlined so far, stemming from at least the 1980’s, but one can assume even earlier, have yet to be ameliorated.

The dissatisfaction with the media’s ability to cover diseases is so strong that it has prompted external forces to intervene. In 2002, the International AIDS society established the “Journalist-to-Journalist HIV/AIDS training program.” In a report on the effectiveness of the program, they said,

Journalists probably are the most able to efficiently disseminate pertinent information on a global scale and must do so in languages that are understood by the general public.

By contrast, misinformation about HIV/AIDS might result in an increase in HIV transmission.20

The HIV/AIDS training program is an example to highlight the third prong of the argument against the news media’s ability to cover emergent diseases.

News organizations as a collective have not increased their ability to report on emergent diseases. The criticisms made about the reporting of AIDS are very similar to the criticisms of SARS coverage. “One of the consistent critiques of the media coverage of AIDS is that the stories tended toward sensationalism”.21 The same has been said about SARS, and most other diseases in the news. The simple fact that this paper could alternate so freely between examples from the SARS coverage and the AIDS coverage is a testament to how similar the reporting styles were.

One of the common critiques, which never disappeared, is how the newspapers handled covering the disease.

The following was published in an account of AIDS coverage.

One characteristic of the media coverage which may relate to the charge of sensationalism is the tendency toward short bursts of coverage and a lack of any significant follow-up on stories. Thus, the coverage of AIDS is shown to skip from one “crisis point” to another, without any evaluation of the progress between those points or how one might have led to the next. It could be said that the naive media newshound lives in a perpetual state of crisis, the unease of which can only be supplanted by the next (and maybe greater) crisis.22

It is, unfortunately, paralleled in post-SARS writing.

In a number of key periods, the press provided what we refer to as ‘saturation coverage.’ During saturation periods, coverage jumped to 3 to 4 times the average level, with each paper printing as many as 25 articles per day about the SARS crisis. This periodically intensified coverage shaped the perception of the intensity of the SARS crisis.

… Saturation news coverage in the local press reinforced the impression that SARS was out of control in Toronto.23

What the repeated criticisms really can be taken to mean is that news organizations are not growing over time. They made the same types of reporting errors during two separate events almost 20 years apart.

It would be incredibly naïve to argue that journalists themselves do not learn from their experiences. The point here is that, on a large scale, the news organization doesn’t become more capable after the event.

In 2009, Karen Palmer, a former health reporter for the Toronto Star, wrote an article with tips for journalists who will be covering a health crisis.

In it, she said

What I remember most about covering SARS wasn’t the urgent news conferences or the in-depth interviews about coronaviruses, it was the overwhelming sense that we were running in all directions, often chasing rather than leading and frequently scaring readers more than informing them.

We worked incredibly long hours, gave interviews to media outlets outside Canada that were curious about the country’s SARS battle and often felt we needed to babysit our stories to ensure editors understood what we were trying to say.

What I remember most was the feeling of incredible frustration.24

The experience of going through the process, following a health crisis from start to finish, would give each individual reporter a better understanding of how to handle the next event.

Some people even go so far as to come up with tips for other journalists. Candace Gibson wrote “How’re we doing so far? A post-SARS report card.”25 She gave a number of tips, some of which have been referenced in this piece. She advocated for strong, clear communication, dealing with numbers responsibly, and not seeking absolutes in a science problem.

Unfortunately, such prescriptive tools, like the academic analysis of media coverage, are unlikely to be accessed by a busy journalist in the midst of a crisis. The knowledge of how to act, how to write, and who and what is important, must be instilled in the reporters themselves.

The truly unfortunate situation is the one which occurred at the New York Times. The Times had a health reporter, Lawrence K. Altman, who had written on AIDS, SARS, and everything in between. During the research efforts for this paper, his work consistently surpassed the quality of the other news pieces analyzed. Considering the Times was one of the papers from which all the examples of bad journalism were drawn, it makes you wonder what was going on in the newsroom.

The Times had a seasoned reporter who seems to have a knack for covering a health crisis. But, at the other end of the newsroom, were the reporters producing the examples used in this essay. Even if the not-so-experienced journalists can’t be expected to read academic papers, we could hope that tips gained through one reporter’s experience would be spread around the organization.

The ramifications of this lack of growth are two-fold; miscommunications are allowed to stagnate, and new emergent diseases are likely to be handled in the same way.

The story of AIDS, or any other emergent disease, is likely to follow a certain pattern. People will over-estimate the risks when there are many unknowns. However, responsible news organizations must present the new information as it comes out. Especially the information that helps clear up the misinterpreted risk.

“AIDS was a genuine crisis in the 1980’s, but today it’s no more a crisis than any other chronic disease suffered by New Yorkers,” said Dr. Elizabeth M. Whelan, the president of A.C.S.H. “We need to put AIDS in context and give it the proportionate share of resources. It shouldn’t be getting more than its share because we’ve been brainwashed into thinking the numbers are greater than they are.”26

Allowing the story to go un-clarified leads to a persistent misunderstanding of the disease. And, if future emergent diseases are handled in the same way, it leads to a cultural atmosphere with a largely disproportionate fear of diseases which are, in reality, relatively under control.

The most effective role that the news media can play during the onset of an emergent disease is that of public informer. The story is already interesting enough that stylistic tricks are unnecessary to grab the reader’s attention. The health information that people need to know, the things that will keep them healthy, should be passed along. Interpretations, conspiracy theories, and rumors will abound in the alternative media and social interactions. The responsible news media should combat this by being, above all else, the source of accurate and clear information.

And for you folks who enjoy a nice oldschool bibliography:

1)      Marantz, Robin. “AIDS A new Disease’s Deadly Odyssey”, The New York Times, February 6, 1983. Magazine Desk.

2)      Emke, Ivan. 2000. “Agents and Structures: Journalists and the Constraints on AIDS Coverage.” Canadian Journal of Communication, Vol 25 (3).

3)      Blakeslee, Sandra. “Mystery Illness Moves a Hospital to Quick Action”, The New York Times, March 23, 2003. National Desk.

4)      Emke, Ivan. 2000. “Agents and Structures: Journalists and the Constraints on AIDS Coverage.” Canadian Journal of Communication, Vol 25 (3).

5)      Broad, William J. “Natural Causes Emerge As Key to Mystery Illness”, The New York Times April 6, 2003. Foreign Desk.

6)      Altman, Lawrence K. “Research Traces AIDS in 6 of 7 Female Partners”, The New York Times, May 19, 1983. National Desk.

7)      Gibson, Candace. “How`re we doing so far? A post-SARS report card”, Jsource.ca, 2009. http://www.j-source.ca/english_new/detail.php?id=3764

8)      Associated Press. “Disease Stirs Fear on Blood Supply”, The New York Times, January 6, 1983. National Desk.

9)      Strauss, Stephen. “AIDS danger in breast milk still uncertain”, The Globe and Mail, September 25, 1986. News.

10)   Kinsella, James. “Covering the Plague: AIDS and the American Media.” Rutgers University Press, 1992.

11)   Emke, Ivan. 2000. “Agents and Structures: Journalists and the Constraints on AIDS Coverage.” Canadian Journal of Communication, Vol 25 (3).

12) Ibid.

13)   Fraser, John. “Used by God during attack on gays, police chief hints”, The Globe and Mail, January 20, 1987. News.

14)   Andresen, Margot. “Pandemic threat overblown by both experts and media.” Canadian Medical Association Journal, Vol. 175 (4) pg 341.

15)   Emke, Ivan. 2000. “Agents and Structures: Journalists and the Constraints on AIDS Coverage.” Canadian Journal of Communication, Vol 25 (3).

16)   Harmon, Amy. “Public Confronts New Virus on Laymen’s Terms”, The New York Times, April 6, 2003. Foreign Desk.

17)   Drache, Daniel and Feldman, Seth. “Media Coverage of the 2003 Toronto SARS Outbreak.” Robarts Centre for Canadian Studies. 2003.

18) Ibid.

19)   Associated Press. “Offensive against AIDS urged by U.S. scientists.” The Globe and Mail, October 30, 1986. News.

20)   Martinez-Cajas, J. L. et al. 2008. “Benefits of an educational program for journalists on media coverage of HIV/AIDS in developing countries.” Journal of the International AIDS Society, Vol. 11(2).

21)   Emke, Ivan. 2000. “Agents and Structures: Journalists and the Constraints on AIDS Coverage.” Canadian Journal of Communication, Vol 25 (3).

22) Ibid.

23)   Drache, Daniel and Feldman, Seth. “Media Coverage of the 2003 Toronto SARS Outbreak.” Robarts Centre for Canadian Studies. 2003.

24)   Palmer, Karen. “Some day, you’ll cover a health crisis”, Jsource.ca, 2009. http://www.jsource.ca/english_new/detail.php?id=3931&PHPSESSID=907017430ac82f0fd0a6ea3c6987d903

25)   Gibson, Candace. “How`re we doing so far? A post-SARS report card”, Jsource.ca, 2009. http://www.j-source.ca/english_new/detail.php?id=3764

26) Tierney, John. “In 80’s, Fear Spread Faster than AIDS”, The New York Times. June 15, 2001. http://www.nytimes.com/2001/06/15/nyregion/the-big-city-in-80-s-fear-spread-faster-than-aids.html

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3 Comments leave one →
  1. August 11, 2010 10:40 am

    A really interesting piece and one that I would agree with wholeheartedly. You might be interested to have a look at my book which has recently been published, which makes many similar points. It is an attempt to unpack what so-called ’emerging infectious diseases’ mean in terms of our culture and how they are put to political uses.
    Best
    Peter Washer

  2. March 13, 2014 2:21 am

    Aw, this was a very good post. Spending some time
    and actual effort to produce a very good article… but what can I say… I hesitate a whole lot
    and never manage to get nearly anything done.

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