PERSPECTIVE Go Big and Go Fast

Go Big and Go Fast — Vaccine Refusal and Disease Eradication Saad B. Omer, M.B., B.S., Ph.D., M.P.H., Walter A. Orenstein, M.D., and Jeffrey P. Koplan, M.D., M.P.H.

isease eradication is an attrac- Many factors contribute to the Empirical studies have validated Dtive public health goal. In ad- development of clusters of people this model as a predictor of vac- dition to eliminating illnesses who refuse vaccines, including cine refusal. In the context of and deaths, eradication can lead changes over time in attitudes to- eradication, reduction in disease to substantial cost savings. Erad- ward vaccines. If aggressive con- incidence reduces the perceptions ication has been attempted for trol efforts have substantially re- of susceptibility to disease and its many human and animal diseases, duced a disease’s incidence, few complications, diminishing an im- such as smallpox, malaria, hook- people in a given community may portant motivation for accepting worm disease, polio, rinderpest, have direct (or indirect) experi- a vaccine. yaws, dracunculiasis (guinea worm ence with that disease. Therefore, It is often assumed that this disease), and yellow fever, and successive age cohorts have only phenomenon does not apply to many tools have been employed a vague collective memory of the low-income countries where there in these efforts. But in the two disease’s dangers, whereas peo- is increasing opposition to vac- diseases that were successfully ple may frequently hear about cines, despite the high burden of eradicated, smallpox and rinder- real and perceived adverse ef- infectious diseases. This perspec- pest, the main tool was a vac- fects of vaccination. Parental tive misses an important point: cine. Eradication strategies for perception of risks and benefits perceptions regarding vaccines polio (a major current focus of associated with vaccines is thus are often vaccine-specific and global eradication efforts) and altered, and vaccine refusals often disease-specific. For example, in measles (whose eradication is be- increase.1 North American and high-income countries, although ing considered) rely on high vac- European countries, for example, many parents have generalized cination coverage through routine have seen substantial reductions concerns regarding immuniza- and supplementary immunization. in the rates of vaccine-prevent- tion, perceptions of specific vac- Eradication efforts for vaccine- able diseases. Since vaccines cines vary considerably. Similarly, preventable diseases face many against measles, mumps, rubella, the more prominent instances of challenges, including vaccine re- and diphtheria were introduced vaccine refusal in low-income fusal. Such refusal in communi- in the United States, their inci- countries have been specific to ties in northern Nigeria and Paki- dence has been reduced by more vaccines for diseases with actual stan, for example, has caused than 99%, and the incidence of or perceived low incidence. Refus- major setbacks to global polio tetanus has fallen by 94% since al of the polio vaccine in north- eradication, contributing to con- routine tetanus vaccination be- ern Nigeria and parts of northern tinued endemic transmission of gan.2,3 These decreases have co- India, for instance, was vaccine- poliovirus in these countries and incided with increases in vaccine specific: communities that refused to the reintroduction of wild-type refusal in the United States and polio vaccine were still demand- poliovirus into countries where Europe. ing measles vaccines. In fact, the transmission had been interrupted. The notion that vaccine accep- low polio rates, achieved through Although wild-type polioviruses tance is influenced by rates of intensive immunization efforts in are no longer endemic in India, vaccine-preventable diseases is previous years, were a reason why refusal played some role in delay- supported by theories from be- many did not consider polio erad- ing elimination. The resurgence havioral sciences. For example, a ication a priority: “Some people of measles in Europe, partially at- useful framework for understand- have never even seen polio, but tributed to vaccine refusal, threat- ing vaccine acceptance is the yet they keep giving us medicine ens its regional elimination and health-belief model, according to for it,” one Nigerian told a re- eventual global eradication. It is which the uptake of a health in- searcher. “If you look around it is therefore important to understand tervention is associated with per- hard to find 2 or 3 people with the determinants and dynamics ceived susceptibility to and sever- polio, but it is easy to go to the of vaccine refusal affecting dis- ity of the relevant disease and the hospital and find 50 people sick ease-eradication initiatives. intervention’s safety and efficacy. with no money to buy the medi-

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cine they need to be treated with. acceptance among the target pop- ductions in disease rates, which Help them instead, but No! You ulation. For example, polio-erad- paradoxically increase the risk of find a small baby who is well ication efforts in India led to the vaccine refusal. It is difficult to and drop medicine in his mouth, successful elimination of polio quantify the precise rate of de- for free!”4 transmission in January 2011. cline in favorable perceptions of a Although change in the epide- But addressing vaccine refusal vaccine, so it’s challenging to pre- miology of a vaccine-preventable may require substantial human dict the exact timing and loca- disease is important in determin- and financial resources. In north- tion of emergence of clusters of ing support for the vaccine, it is ern India, it took sustained multi- vaccine refusers. Yet it’s reason- not the only important factor year efforts and involvement of able to assume that the longer it involved. Local sociopolitical, nontraditional stakeholders (such takes to move from aggressive demographic, and health-system– as Muslim religious leaders) to control or regional elimination related issues and competing overcome resistance to vaccina- to global eradication, the more health problems (e.g., HIV infec- tion. Implementing high-intensity likely it is that vaccine refusal tion and malnutrition) affect both communication and social mobili- will emerge. the response of parents and the zation programs is more challeng- Eradication should therefore not community and the effectiveness ing when factors such as lack of be a halfhearted effort. Aggres- of control programs. For exam- security are at play, as is the case sive disease control is in itself a ple, in Nigeria, local politics, dis- for polio elimination in Afghani- worthy public health goal, but it trust of the central government stan and Pakistan. shouldn’t be assumed to be an and the West, and the history of The next vaccine-preventable automatic stepping-stone to erad- unethical practices of Western disease being considered for ication. If a disease such as mea- pharmaceutical companies all con- global eradication is measles. A sles is considered a priority by tributed to polio-vaccination re- global technical consultation com- the global public health commu- sistance.4 Similarly, in northern missioned by the World Health nity, human and financial re- India, the resistance to polio vac- Organization (WHO) to assess sources should be committed up cination was centered in the Mus- the feasibility of global measles front to a full-scale eradication lim minority communities that eradication concluded that “mea- initiative, conducted with a sense have historically felt marginalized. sles can and should be eradicat- of urgency. If we don’t “go big and But local factors operate in a mi- ed.”5 This conclusion has been go fast,” we may have to spend a lieu of decreased appreciation of endorsed by the WHO Strategic prolonged period on eradication vaccines — an argument sup- Advisory Group of Experts on efforts with a diminished likeli- ported by the specificity of op- Immunization, and regional elim- hood of success. position to polio vaccine. ination goals have been estab- Disclosure forms provided by the authors Other major challenges to dis- lished by all WHO regions except are available with the full text of this article ease eradication include subopti- the Southeast Asian region. How- at NEJM.org. mal vaccine effectiveness in cer- ever, there has been no target tain populations, emergence of date set for global eradication. From the Hubert Department of Global Health, Emory University Rollins School of vaccine-derived pathogenic strains, Initiatives for eradicating diseases Public Health (S.B.O.); the Emory Vaccine difficulties in reaching migrant with a high herd-immunity thresh- Center (S.B.O., W.A.O.) and the Emory populations, chronic underfund- old (such as measles, which has a Global Health Institute (J.P.K.), Emory Uni- versity; and the Center for Health Research ing, international conflict, and threshold of approximately 94%) Southeast (S.B.O) — all in Atlanta. violence against health workers. are more vulnerable to the effects The relative importance of vari- of pockets of vaccine refusal 1. Chen RT, Hibbs B. Vaccine safety: current ous challenges, including vaccine than are attempts to eradicate and future challenges. Pediatr Ann 1998;27: 445-55. refusal, varies among and within disease with lower herd-immunity 2. Notifiable diseases and mortality tables. countries. thresholds, such as smallpox MMWR Morb Mortal Wkly Rep 2013;61(52): Resistance to vaccination can (which had a threshold of ap- ND-719–ND-732. [Erratum, MMWR Morb Mortal Wkly Rep 2013;62:154.] be overcome with carefully planned proximately 80 to 85%). 3. Roush SW, Murphy TV. Historical com- and executed social mobilization One lesson from past eradica- parisons of morbidity and mortality for vac- initiatives and bundling of erad- tion efforts is that the last mile cine-preventable diseases in the United States. JAMA 2007;298:2155-63. ication-related vaccination with is the longest. Aggressive early 4. Yahya M. Polio vaccines — difficult to other services that have higher efforts often cause dramatic re- swallow: the story of a controversy in north-

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ern Nigeria. IDS working papers 261. Brigh- 5. World Health Organization. Proceedings 2010. J Infect Dis 2011;204:Suppl 1:S4-S13. ton, United Kingdom: Institute of Develop- of the Global Technical Consultation to assess DOI: 10.1056/NEJMp1300765 ment Studies, 2006. the feasibility of measles eradication, 28-30 July Copyright © 2013 Massachusetts Medical Society.

From Illness as Culture to Caregiving as Moral Experience Arthur Kleinman, M.D.

n the early 2000s, my wife devel- ily’s anxious and burdensome ex- and immigrant minority groups.3 Ioped early-onset Alzheimer’s perience of illness and the clini- But by the 1990s, it became clear disease, and I got taken up in the cian’s intense quest in diagnosing that the illness–disease distinc- everyday reality of being her pri- and treating disease were two sub- tion was being used in a way that mary caregiver. The experience stantially different kinds of things.1 undermined exactly the sort of was transformative on a profes- The former was a struggle to understanding it was meant to sional as well as a personal level: bear, interpret, and respond to foster. Eliciting the explanatory although it validated my decades- symptoms; the latter, the appli- model had become a conversation long insistence on the primacy of cation of a particular medical stopper, a mechanical task that patients’ lived experience of ill- system’s classification of disease assumed that dynamic meanings ness, it deepened my questioning entities and enactment of proto- could be fixed as a single, un- of the distinction, which I had typical treatment interventions. changing, material thing in the pa- popularized, between illness (as Calling for renewed attention to tient’s record. On clinical rounds, patients experience it) and dis- patients’ lived experience of symp- trainees presenting cases treated ease (as physicians diagnose, treat, toms, I emphasized the illness– the patient’s explanatory model and understand it). The useful- disease distinction and proposed as one more concrete parameter, ness of this conceptual divide be- that by eliciting lay explanatory like the CBC or electrolytes. What gan to seem inadequate to me, models through eight questions, was meant to humanize care by just as I was becoming dismayed clinicians could understand ill- providing room for lay voices and by the way it was being applied in ness experiences and so provide practices appeared instead to be medical education and practice. care as well as cure.2 reducing complex lives to limit- Meant to enrich the living art of Those questions — beginning ing, biased stereotypes. I hadn’t medical care, the distinction and with “What do you call your prob- reckoned with people’s capacity the philosophy it reflected had lem?,” “What do you think is its to routinize and objectify others’ instead been co-opted and com- cause?,” “How does it affect your suffering and fears in the quest to partmentalized as a discrete ele- body?,” and “What do you most render their tasks manageable. ment of a rote medical science. fear about it and the treatment?” To make matters worse, certain Back in the early 1970s, at a — were meant to open conversa- aficionados fetishized illness nar- time of rapid growth of high tions by bringing patients’ illness ratives per se as symbols and technology, reductionism, and bu- narratives into the patient–doctor stories, divorcing meaning from reaucracy in medicine, there had relationship, converting a rather the economic, emotional, and re- been rising anxiety that clinicians one-sided interaction into a richer, lational context of the lived expe- weren’t treating patients as indi- more egalitarian one. Patients’ and rience of suffering, rather than viduals whose lives and disorders physicians’ distinctive explanatory using storytelling to make expe- had a richly human background models reflected cultural orien- rience available for reflection and and social context. I began writ- tations of the society, the profes- communication. Moreover, the ing articles and books, drawing sion, and the institution that au- method seemed to assume that on my work as a consultation– thorized a certain kind of clinical culture was relevant only to lay- liaison psychiatrist and cross- reality, which would shape the persons, not professionals, and it cultural researcher, on how physi- patient’s treatment and the eval- got caught up in a cultural-com- cians’ narrow focus on diagnosis uation of outcomes. petence movement that reified eso- and treatment led them to miss This clinical method became teric cultural beliefs and ethnic or intentionally exclude the cen- widely taught, especially as a stereotypes.3 That had not been trality of the patient’s experience. model for delivering effective, my point. The way illness was I argued that the patient and fam- culturally informed care to ethnic being separated from disease also

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