Who's Afraid of Noncommunicable Diseases? Raising Awareness of the Effects of Noncommunicable Diseases on Global Health

Abstract

Public-health priorities are in part driven by fear, yet fear has long been recognized as posing a threat to effective public health interventions. In this article, the authors review the role of fear in global health by focusing on the leading global cause of death and disability: noncommunicable diseases. Taking an historical perspective, first the authors review Samuel Adams’ 1911 analysis of the role of fear in generating public health priority and his recommendations about mass educating the public. Next, they show that Adams’ analysis still applies today, drawing on contemporary responses to H1N1 and HIV, while illustrating the ongoing neglect of long-term threats such as noncommunicable diseases. Then, they pose the question, “Is it possible, necessary, or useful to create a fear factor for noncommunicable diseases?” After reviewing mixed evidence about the effects of fear on social change (on individual behaviors and on building a mass movement to achieve collective action), the authors conclude by setting out an evidence-based, marketing strategy to generate a sustained, rational response to the noncommunicable disease epidemic.

Noncommunicable diseases (NCD), mainly heart disease, common cancers, diabetes, and chronic obstructive pulmonary disease, are the leading causes of death and disability worldwide. Despite the substantial, and largely avoidable, burden of NCD on health and society, the response has thus far not been commensurate (see The Lancet's special series on NCDs: “The Neglected Epidemic in 2005, 2007, and 2010”; Beaglehole, Bonita, Alleyne et al., 2011; Beaglehole, Bonita, Horton et al., 2011; Beaglehole, Ebrahim, Reddy, Voute, & Leeder, 2007; Delamothe, 2009; Epping-Jordan, Galea, Tukuitonga, & Beaglehole, 2005; Horton, 2005; Strong, Mathers, Leeder, & Beaglehole, 2005). One indication of a low global priority is the observation that the Millennium Development Goals for health do not incorporate NCDs. In part, this situation occurs because NCDs are erroneously viewed as diseases of the wealthy, unlike malaria and tuberculosis. To the contrary, current data show women ages 15–49 years living in Africa have more than four times the risk of dying prematurely from an NCD than women of similar age living in high-income countries (World Health Organization, 2009). NCDs are also a cause of poverty and are one of the vices in the poverty trap that ensnares households in cycles of debt and illness. During the recent UN Summit on the Millennium Development Goals, the burden of NCDs was recognized as a critical determinant of achievement of the Goals, and this has been further justified in statistical studies showing that the NCD burden hinders progress towards the Goals after other factors are controlled for. It is also now clearer that the possibility of achieving the Millennium Development Goals will be remote unless attention is paid to the NCDs (Hotez & Daar, 2008; D. Stuckler, Basu, & McKee, 2010).

Reasons for this neglect of NCDs are numerous (Stuckler, 2008). People sometimes view NCDs with a fatalistic perspective (as people recognize that surely they must die of something) and a blame-the-victim perspective (as people believe they themselves are agents of their own misfortunate, making unhealthy choices about whether to smoke, be physically active, or eat unhealthy diets; Geneau et al., 2011). In part, these perceptions stem from misunderstandings about the avoidable causes of premature deaths caused by NCDs, such as confusing unhealthy dietary choices with the realities of food insecurity and food pricing, which result in the poorest groups eating the most processed foods. Past fears of diseases also shape current policy responses, even when those previous threats are no longer an epidemiological priority. Rapid, short-term outbreaks of disease tend to garner more attention than slow, long-term increases, as an outbreak can be characterized in dramatic terms by media outlets. Fears of the spread of disease appear to have played a role in shaping how development and foreign aid are allocated to competing health priorities (Gibson, Andersson, Ostrom, & Shivakumar, 2005). Stigmatizing external manifestations—“the other”—are also a less visible feature of NCDs. Analogous to the longer term risks posed by climate change, NCDs are a slow, silent epidemic (Stuckler & Siegel 2011).

One recent international study of 12 large countries confirmed the huge burden of NCD mortality among them but also revealed that 80% of individuals were “worried” about the possibility of their developing an NCD (Forder, 2010). It is surprising that this worry did not correlate with the level of mortality, and there was more worry about cancer than about cardiovascular disease despite the prevalence and lethality of the latter. Individual worry has not translated into the level of popular fear that would generate more aggressive collective action.

The public is also generally unaware that global health has been marked by a health transition, during which populations have shifted from having a high burden of acute infectious diseases to a high burden of NCDs. ¹ In one recent and representative survey of American adults, it was found that the majority of the public believed the leading causes of death in the developing world were caused by HIV and starvation, rather than the actual situation of stroke and heart disease (Siegel, Kishore, Feigl, & Stuckler, 2011; Stuckler & Siegel, 2011).

Although the history of public health has been marked by public hysteria about infectious disease outbreaks, there is no similar widespread public fear of the dangers posed by NCDs. True awareness and commitment to a health issue can ultimately be judged by the decision to spend money. Thus, it is revealing that less than 3% of development assistance for health is allocated to addressing NCDs (Nugent & Feigl, 2010; Stuckler & Siegel, 2011), even though there is clear evidence that they can be avoided at low cost with cost-effective interventions such as tobacco and salt regulation (Beaglehole et al., 2007; Bonita & Beaglehole, 2007; Strong et al., 2005). In high-income countries, where NCDs are viewed as the dominant public health issues, the majority of funding on NCDs is spent on costly treatments for complications and late-stage illness, rather than earlier prevention and detection, which could avoid risks of disease in the first place. Thus, the threat and potential response of high and low income countries are similar, although the types of neglect and communication strategies needed differ. A particular concern is that high-income countries, the main base of donors, could perpetuate the responses to NCD of high-income countries in low-income countries, which may not be appropriate in such resource-deprived environments.

The failure to address the rising avoidable burden of NCD also does not simply stem from a lack of evidence. Effective and affordable interventions are available and well established. For example, implementing the Framework Convention on Tobacco Control, an internationally agreed-upon framework of effective tobacco control measures including taxes and public bans, can reduce morbidity and mortality caused by NCDs at low cost. Similar solutions exist for reducing harmful drinking, salt and fat intake, as well as promoting physical inactivity. The Lancet's series on NCDs in 2005 and 2007 identified how a few cost-effective solutions, if scaled up, could save 36 million lives and more than $500 billion USD if implemented in 22 high-burden countries (Beaglehole et al., 2007; Epping-Jordan et al., 2005; Strong et al., 2005). Yet, as noted in a third series in 2010, action has not been forthcoming (Geneau et al., 2011), leading to renewed calls for implementing a set of priority interventions on NCDs (see Table 1).

Table 1. Selected priority interventions for noncommunicable diseases

Prevention

• World free of tobacco by 2040

• Salt reduction to less than 5grams/day by 2025

• Promoting health diets and physical activity

• Reducing harmful alcohol consumption

Treatment

• Universal access to essential medicines and technologies

The situation is changing as international advocacy has started to address NCDs at public forums, especially at the level of government meetings and international organization reports. On May 13, 2010, the United Nations adopted Resolution 64/265, which called for a high-level meeting with the participation of heads of state and government to address NCDs (United Nations, 2010). It is expected that this meeting will set the stage for a major global attempt to prevent and control these diseases (Alleyne, Stuckler, & Alwan, 2010). However, for sustained attention and long-term commitment to these diseases, there has to be sustained attention by the populations of the countries and their continued pressure on their governments to fulfill the commitments that will be made. There has been a collective movement at the level of governments; now, too, there must be a collective movement at the level of populations.

In view of the low level of political priority of NCD, and of the important forthcoming UN events to communicate the risks of NCDs, in this article, we ask the question, “Is it possible, necessary or even useful to create a ‘fear factor’ for NCDs to galvanize popular attention and a response by policymakers?” Our analysis builds on a narrative analysis of the literature, starting with a review of a classic public health article on the role of fear in risk communication.

Public Hysteria and Public Health

In the first volume of the Journal of the American Public Health Association, published in 1911, the famous public health thinker Samuel Hopkins Adams authored the article, “Public Health and Public Hysteria.” In it, he argued that public health awareness was generated and sustained when fear of disease induced hysterical fear (Adams, 1911). Adams described the U.S. public's reaction to leprosy:

Only a few years ago a wretched alien leper was harried from state to state in this supposedly enlightened country, until he met a miserable death from terror and exposure, incidentally scaring several hysterical cities quite out of their wits. One of those cities, without alarm or shame, had suffered several years of typhoid fever with a mortality some two hundred per cent.

Leprosy essentially posed no risk of becoming endemic or epidemic, Adams explained, but was a “synonym for terror.” Meanwhile, chronic problems such as childhood infection remained unpublicized and unaddressed, even when they debilitated and killed far more people.

Adams argued that public health practice was undermined by its inability to redirect public fear toward the most pressing health problems or towards constructive interventions. As he noted, “Because the public, led astray by the fear of a word, misbelieves or disbelieves the true danger, we must, perforce, waste strength in fighting shadows, while the real enemy exacts its ceaseless toll of life, all but unchecked.” Popular education, Adams believed, could address the spread of misinformation about the nature and consequences of disease. In his mind, improvements in public health policy could be enacted “through the press, the platform, the pulpit and the schools.”

One century has passed since Adams’ original thoughts on hysteria and health, and much has changed to promote popular education and strengthen public health capacity. After an industrial revolution, a Green Revolution, and now an information revolution, disease risk factors as varied as infections and tobacco have global reach, as does health information. Public health education has expanded; hygiene is now taught in the home, and biological conceptions of disease are part of the core curriculum in most secondary schools. International institutions such as the World Health Organization and Global Fund to Fight AIDS, Tuberculosis, and Malaria have greater ability to exhibit coordinated responses to global health threats.

Despite these social and educational developments, public angst and international hysteria remain an ever-present part of the public sense of what constitutes our world's greatest disease risks. The fear of avian influenza (bird flu) and the severe acute respiratory syndrome reveal the persistence of Adams’ lessons. In one extreme case in the United States, the death of a bird (potentially because of swine flu), generated more media attention over the course of several months than did the issue of rising diabetes rates; the former resulted in an estimated 10 deaths in the United States, while the latter contributes more to 70,000 deaths per year. Responses to these epidemics continue to be debated among ethicists and lawyers for their potential conflicts of interest as well as impingements on country sovereignty and individual rights (Gostin, 2009; Phadke, 2010). HIV similarly generated hysteria in early years of the epidemic in the 1980s, preventing appropriate responses as hospitals closed their doors to infected people, and evidence that the disease could not be transmitted by routine contact was ignored (Nicoll, 1993). Early effective policies to stem the epidemic were further hampered by a fixation on the initial cases, as the disease was labeled gay-related immune deficiency, ignoring the fact that hemophiliacs and injection drug users were also affected, which could have led to early investigation of the public blood supply and faster identification of the etiology. As stigma built in some communities, affected populations were refused service under the premise that the disease had been concocted as an excuse for the U.S. Public Health Service to experiment on African American populations (reminiscent of the Tuskegee experiments), or that HIV was a colonial construct to distribute toxic medications to South African Blacks.

What continues to capture the public's attention is often the fear of contagion, the fear of conspiracy, or the fear of “the other” (e.g., migrants, gays). At the origin of fear associated with some infectious diseases there is also a fear of the “randomness of death.” Less commonly recognized are threads of epidemiologic fact that relate to universal global health risks (poverty, social determinants of health); chronic problems in the health care system or the social system that lead to disease vulnerability, stigma, and distrust (minority status, poor health care access); and “slow epidemics” of disease that are ignored because they become part of the woodwork of society—the daily deaths that do not make headlines because they are so routine as to be considered just part of the world's daily reality rather than a subject for intervention (the typhoid fever of yesterday, the diabetes and heart disease of today). Insights from behavioral psychology and economics appear to have found this oversight reflects an underlying, and fundamental, public health policy challenge: How do concerned public health advocates create a rational concern for addressing a long-term, collective threat, when psychologically, people are predisposed to deal with immediate and highly visible traumas and disease outbreaks? Stated otherwise, how should threats of long-term, cumulative health risks be communicated?

Creating a Fear Factor for NCDs? Potential Benefits and Concerns

Fear appeals are predominant in social marketing of public health risks (Hastings, Stead, & Webb, 2004). Viewed more broadly, educating the public to generate appropriate levels of worry about the major diseases affecting a population can potentially improve public health in two ways: by inducing people to change their behaviors, and by generating a mass movement to effect policy change and achieve collective action.

In terms of individual behavior, there is a rich literature on the social marketing of behavior change, showing that the greater the degree of fear engendered by articulation of the threat, the greater the degree of persuasion (Witte & Allen, 2000). Some laboratory studies suggest that fear may work, although one review of the literature has critiqued these trials for studying subjects under conditions of forced, short-term exposures to fear messages (creating artificially high attention from shock ads), and concluded that the long-term effectiveness on behavioral change remains poorly studied and unclear (as individuals tune out messages, perversely making them less responsive to future communication attempts; Hastings & MacFadyen, 2002; Hastings et al., 2004; Pierce, Macaskill, & Hill, 1998). However, the translation of persuasion into appropriate health behavior depends very much on the self-efficacy of the individuals (i.e., their ability to translate desired changes into actual changes), and it is not clear that hysterical reactions will lead to effective changes (Prevention First, 2008). Those who have more resources are more likely to have the necessary self-efficacy to change and are more likely to be influential; those who are poor are rarely able to make use of educational tools, if the circumstances of their life do not provide the agency for change (a classical example is that education on healthy foods is of little efficacy when the affected person is too poor to purchase expensive produce, and can only afford cheaper processed foods; Hastings et al., 2004). In the case of youth, there is good evidence that although scare tactics and threat ads may engender fear, there is little effect on health behavior with respect to drug abuse, and there may be more benefit from positive, humorous, and empathy-based messages (Prevention First, 2008). However, Article 11 of the World Health Organization Framework Convention on Tobacco Control details the size of cigarette package warnings and the promotion of the display of graphic materials on the cigarette packages has been a successful instrument for reducing smoking (Cunningham, 2009). Some literature also points to the importance of matching messages to the audience's frame or stage of readiness for behavioral change, particularly with regard to tobacco cessation (Hastings & MacFadyen, 2002; Hastings et al., 2004).

Fear may have greater power to effect social change by working to create a mass public-health movement that is typically not seen when the disease itself does not engender fear. As the French mathematician Henri Poincare noted “the plague was nothing; fear of the plague was much more formidable” (Epsteinm, Parker, Cummings, & Hammond, 2011). Fear of the consequences of HIV, combined with knowledge of available interventions, created outrage among infected and noninfected groups to provide greater access to antiretroviral therapy. At the societal level fear, if uninformed, has a dark side, not just the irrational elements of hysteria noted earlier but also of stymieing action. Unwarranted fear of HIV led to regressive policies such as the banning of gay men from providing blood transfusions and the prevention of Haitians from immigrating to the United States, both of which were statistically demonstrated to have no effect on HIV rates, but which generated great social harms to the affected groups. The HIV/AIDS movement, through mass education, helped transform fear into empathy (although there are noted risks of empathy fatigue, as currently observed in the backlash to HIV/AIDS funding from development agencies and donors). Figure 1 depicts the dynamic of how mass education, as called for by Adams, can stimulate a positive cycle of public health action.

Figure 1 Mass education, fear, and public health promotion.

In mass educating the public, the media play a crucial role. The economic incentives of the media, however, may lead it to be susceptible to similar risk perception pitfalls as the general public but perversely amplify them through widespread dissemination. For example, like individuals, the media respond asymmetrically to positive and negative framing, tending to emphasize stories with blame, conflict, and individuals. Table 2 summarizes key fright factors and media triggers identified as part of a U.K. review of best practices for communicating public health risks to populations (U.K. Department of Health, 1997). Although the communication literature often focuses on individual attitudes and behaviors, it is also important to study how framing risks shapes people's attitudes toward public policy on NCDs (McKee & Stuckler, 2010). One recent study finding that people exposed to news stories framing of diabetes risks on the basis of social causes were more likely to support effective public-health prevention policies than were those exposed to gene-based explanations, although the effects differed considerably by partisan affiliation (see Table 3; Gollust, Lantz, & Ubel, 2009).

Table 2. Fright factors and media triggers

In their “Pointers to Good Practice” for communicating about risks to public health, the U.K. Department of Health identified a number of risk characteristics that make risks generally more worrying for audiences (U.K. Department of Health, 1997).

Fright Factors

Risks are generally more worrying (and less acceptable) if perceived:

1. to be involuntary (e.g., exposure to pollution) rather than voluntary (e.g., dangerous sports or smoking)

2. as inequitably distributed (some benefit while others suffer the consequences)

3. as inescapable by taking personal precautions

4. to arise from an unfamiliar or novel source

5. to result from man-made, rather than natural, sources

6. to cause hidden and irreversible damage, e.g., through onset of illness many years after exposure

7. to pose some particular danger to small children or pregnant women or more generally to future generations

8. to threaten a form of death (or illness/injury) arousing particular dread

9. to damage identifiable rather than anonymous victims

10. to be poorly understood by science

11. as subject to contradictory statements from responsible sources (or, even worse, from the same source).

Media Triggers

A possible risk to public health is more likely to become a major story if the following are prominent or can readily be made to become so:

1. Questions of blame

2. Alleged secrets and attempted “cover-ups"

3. “Human interest” through identifiable heroes, villains, dupes, etc. (as well as victims)

4. Links with existing high-profile issues or personalities

5. Conflict

6. Signal value: the story as a portent of further ills (“What next?”)

7. Many people exposed to the risk, even if at low levels (“It could be you!”).

8. Strong visual impact (e.g., pictures of suffering)

9. Links to sex and/or crime

Table 3. Risk framing and support for public health policy

There is considerable evidence that people presented with balanced arguments place weight on those they already agree with, exhibiting what is termed confirmation bias. A recent study from the United States randomly allocated one of four versions of an authoritative news story about diabetes to people who had declared different political allegiances. Each story was identical except for how they described the cause of diabetes. One said nothing about the cause (the control), whereas the three others cited genes, individual lifestyle choices, and social determinants. They were then asked whether they agreed with two statements on the reason people get diabetes, one specifying social determinants and the other genes. Democrats were most likely to agree that social determinants were a cause, regardless of which version they read. Independents reading the version where social determinants were the cause were more likely to agree with this explanation than those who read the control story, but the social determinants version had no effect on Republicans’ views. Each group was then asked about collective actions to tackle diabetes, such as restrictions on junk food. Democrats reading the social determinants version were significantly more likely than controls to support action but Republicans were less so.

Communicating risks of NCD also has important implications. Irrespective of its effectiveness (which is disputed), drawing on threat and shock ads to induce behavioral change implies a set of experts has knowledge about the appropriate direction of society and individual action (Hastings & MacFadyen, 2002; Hastings et al., 2004). While policymakers and experts may argue for a greater degree of rational or warranted concern about the risk of NCDs, such a response cannot be assumed socially acceptable or even desirable. A related ethical issue is paternalism, whereby the state interferes with the individual to protect them from harm (as with compulsory seat belts), as interventions to mass educate will influence people's cognitions and perceptions, and ultimately their behaviors, possibly in unintended ways. Another concern is the anxiety produced by fear messages, itself a potential cause of NCD risks (Hastings et al., 2004). However, it is important to counterbalance these ethical concerns with those linked to inaction—mainly those to the individual from a lack of awareness, or from unwarranted fear and potential detrimental effects of population hysteria, both of which could be addressed with state intervention. Also, it may be possible to overcome potential ethical concerns and increase the effectiveness of education. Alternatives to fear appeals focus on positive reinforcement messages and draw on humor. Risk communication strategies that draw on community input may help match social marketing to a group's readiness for change, as individuals at risk and in terms of addressing collective forces that increase risk of NCDs.

Thus, our review of the literature suggests a tension, pointing to the importance of nonfear approaches for significant and longer term individual behavioral change but of fear-based approaches for generating collective movements. The latter appears most effective when fear of a disease, especially the seeming randomness of death, can translate into widespread empathy. Such empathy-based strategies have been successfully applied to address risks of road-traffic fatalities in Scotland, for example (Slater, 1999). A mix of humor and irony also seemed to have favorable effects on awareness, attitude change, and attempts to quit smoking (Pechmann, 2001). In communicating risks of NCDs in high-income countries, it may be necessary to communicate that NCDs can strike anyone at any age, as successfully applied in breast cancer messages, and continually emphasize the role of external forces and potential for effective preventative measures, as used in tobacco control marketing. In terms of global health, communication should focus on the longer term, aiming to build a collective movement. While such evidence of longer term effects of risk communication on political processes is relatively lacking, it appears important to emphasize the inequalities in risks, role of social determinants, and mutual benefits of interventions.

Perhaps there is a role for addressing irrational fear and creating some modicum of rational fear, or at least heightened concern, for NCDs in order to foster the collective popular movement that may be necessary to spur political action. Geneau and colleagues used the political process model to posit measures necessary to raise the political priority of NCDs and point out three necessary conditions (Geneau et al., 2011; McAdam, 1982). First, there must be consciousness of the social injustice caused by the problem and framing the debate to highlight this injustice. Second, the public must identify political opportunities. Third, the mobilized group must galvanize resources for action. Here, we argue that heightening concern among the population contributes to reframing the debate and could be another factor in not only raising political priority, but ensuring continued attention. Several concrete strategies and tactics may help achieve a level of public concern that generates a sustained, rational response (see Table 4).

Table 4. Selected tactics for generating a sustained, rational response to NCDs

• Evidence: disseminating the economic and health rationale for increasing attention to NCDs at the national level as well as evidence of how prior policies have reduced mortality and morbidity at affordable cost and, in some cases, with savings.

• Popular Education: mass marketing of the consequences of NCDs using emotive and recognizable symbols, not just evidence, focusing on three areas:

(a) complications of NCDs—such as blindness, impotence, and amputations in the case of diabetes

(b) inequalities in NCDs—emphasizing gross divides in risks among vulnerable groups and affluent ones

(c) human rights case for addressing NCDs—moral imperative to protect people's health from forces beyond their control

Conclusion

NCDs are now attracting high-level political attention in keeping with the health and economic threats they constitute. However, persistent attention by the general public and at the political level requires that there be heightened concern for these diseases. The marketing of such concern must be addressed. Lessons may be learned from the accidental or deliberate hysteria around some contagious diseases. The case for collective international action is based on the universal concern for global health equity as well as on the global nature of the vectors for NCDs. Fear can be a possible motivator for that concern, but there is a pressing need to understand its role in global health for communicating more effectively at the national and global levels the need and urgency of tackling the NCD epidemic.

Acknowledgments

The opinions expressed and the data communicated in this paper are those of the authors only and do not necessarily reflect the views of the World Economic Forum or of all the members of the Global Agenda Council on Non-Communicable Diseases.

Notes

¹The risks of NCDs are highly avoidable. Tobacco is the main cause of pulmonary disease and cancers, and the world's greatest preventable killer. Similarly, alcohol is the world's third most important risk factor for disability after low birth weight and unsafe sex, and in those aged 25–59 years, the world's single most important risk factor for disability-adjusted life years.

Source: Adapted from Beaglehole et al. (2011).

Note. Based on Gollust, Lantz, and Ubel (2009); adapted from McKee and Stuckler (2010).

Note. NCDs = noncommunicable diseases.