Ingrid Wolfe
Introduction
The health of Europe’s children has improved markedly over the decades from 1970 to 2010. But what has been the contribution of child health policies, and what were the determinants of their success? These are not easy questions to answer because relevant health policies and desired outcomes for an area as broad as child health are many compared with, for example, policies designed to tackle a specifi c risk factor such as tobacco consumption, where the immediate goal is to reduce smoking rates.
As in other areas covered in this book, the translation of evidence about child health needs and effective interventions into policy and practice is a complex non-linear and often non-rational process. Kingdon (1984) identifi ed three essential conditions for successful policy-making: problem recognition, politics; and policies (this will be further elaborated in Chapter 15). The examples presented in this chapter will highlight important lessons about each of these aspects of children’s health policy. Three groups of conditions will be discussed that together account for approximately two-thirds of deaths among children (Fig. 6.1): infectious diseases, external causes and ill-defi ned causes (the last being part of the ‘other’ group).
Infectious diseases
This section will examine two of the once common infectious diseases of child-hood: fi rst, from diphtheria, we learn about the need for systems resilience;
second, through measles, we learn how – or how not – to respond to public uncertainty about vaccine safety.
Diphtheria
Diphtheria vaccination
In the 1950s, before a diphtheria vaccination programme began, there were more than 750,000 cases of the disease in the USSR. A universal childhood vaccination programme, initiated in 1958 (Khazanov 1964), successfully controlled the disease for several decades (Vitek and Wharton 1998). By the 1970s, the incidence in the USSR was 0.08 per 100,000 population, comparable to western Europe fi gures. The Semashko model of a centralized health system with a strong public health service, known as ‘San-Epid’, was responsible for disease surveillance and prevention and made an important contribution to the successful control of vaccine-preventable diseases (Gotsadze et al. 2010).
A slow resurgence of diphtheria in the USSR started in the late 1970s until an epidemic began around 1990. Cases of the disease increased by 70% between 1989 and 1990, tripled by 1991, and by 1992 was almost 6000. Within a year the number affected had reached nearly 20,000 and an epidemic was fi rmly established.
The dissolution of the USSR that began in the late 1980s put pressures on the old San-Epid system of public health, which failed to adapt suffi ciently to Figure 6.1 Causes of death among children aged 0–14 years in the EU-15, 2009–2010 Source: WHO Regional Offi ce for Europe 2012
the changing relationships among states and institutions. The newly emerg-ing states, to differemerg-ing extents, allowed their public health systems to become weakened and fragmented, and organizational instability compromised the ability of their public health systems to perform optimally. The result was a catastrophic operational failure: the inability to manage the early stages of the diphtheria outbreak and prevent the epidemic that ensued.
Figure 6.2 shows precipitate declines in vaccine coverage in the Common-wealth of Independent States (CIS) in the early to mid-1990s. Concurrent with the dip in vaccination rates are large peaks in disease incidence. Between 1990 and 1996, there were approximately 125,000 cases and 4000 deaths in the former Soviet countries (Centers for Disease Control and Prevention 1996).
Latvia and Sweden are shown as examples of neighbouring countries that had contrasting experiences with diphtheria. Sweden had a stable public health system and experienced no rise in diphtheria cases. Latvia underwent profound system upheaval, vaccine coverage rates fell and the largest epidemic in Europe occurred, which unusually was mostly among the adult population (Griskevica 2002). A mass vaccination campaign was supported by outside agencies and within a few years the Latvian vaccine coverage and disease incidence rates matched those of Sweden, where, from the mid-1970s onwards, vaccine coverage had continued to rise and diphtheria incidence to decline.
What happened in the CIS region that differed from the rest of Europe, and Sweden in particular? The epidemic occurred because of a complex and ulti-mately dangerous mix of infl uences. Vaccine-induced immunity wanes after some decades (Galazka and Robertson 1995) and, paradoxically, because of the success of the vaccination programme, the opportunity for naturally occurring immunity to emerge as a result of disease had diminished. There was no adult revaccination programme (Vitek and Wharton 1998), and increased suscep-tibility to diphtheria among adults was the result. Meanwhile, children had also become more vulnerable in the early 1990s because of a variety of changes in vaccination practice, such as lengthening the interval between booster
Figure 6.2 Diphtheria incidence and vaccine coverage in the Commonwealth of Independent States (CIS), Latvia and Sweden
Source: WHO Regional Offi ce for Europe 2012.
doses, increasing numbers of children believed to have contraindications to vaccination and a growing popular belief that vaccination could be harmful (Vitek and Wharton 1998). The result was an increase in the number of cases in children, which became an important factor in spread of disease to the adult population. The vaccine itself was quickly excluded as a cause; case–
control studies showed the vaccine itself was not faulty (Hardy 1993), and once vaccine coverage increased disease incidence fell quickly, confi rming the vaccine’s effi cacy.
The crucial factors in the epidemic becoming established were the profound social and economic changes accompanying the break-up of the USSR in 1991.
Overcrowded and impoverished urban housing conditions and reduced barriers to population movement between newly independent states also contributed.
These events helped to create a perfect storm of conditions that allowed an epidemic to occur. Disrupted health systems made it impossible to recognize the early signals of concern rapidly; thus the fi rst element of Kingdon’s policy framework (problem recognition) failed. Once the problem became evident, unstable public health systems were unable to take effective early action to control the burgeoning epidemic (Hardy 1993). This represents a failure of the politics aspect of the policy framework. The visible participants were engaged in the destruction and rebuilding of nations.
Control of the diphtheria epidemic in the CIS was eventually achieved by international cooperation, with an Interagency Immunization Coordinating Committee. Effective policy development and implementation could only take place when external infl uences were brought in to overcome domestic weaknesses.
What general lessons can be learned from the diphtheria epidemic?
Diphtheria began to spread in the CIS because of particular conditions affecting the region. It developed into an epidemic that was beyond the abilities of local systems to contain. The operational failures of local public health systems were exacerbated by a series of policy failures, which provide important learning points. Disruption of public health systems and health services on the scale that accompanied the massive political changes in the former USSR are rare events, but health systems in all European countries are in transition of varying degrees and types, with consequences for the resilience of health protection systems (Castleden et al. 2011). This is particularly the case for preventive services such as vaccination and surveillance in straitened economic conditions.
Indeed, some recommendations made following the diphtheria epidemic have yet to be implemented in many European countries. For example vaccina-tion programmes should be reviewed to ensure that populavaccina-tion immunity con-tinues to be adequate throughout the life course. This appears not to have led to changes in policy in the United Kingdom, for example, as there have been no changes to the schedule for diphtheria vaccination to ensure immunity per-sists into later adulthood, so susceptibility to resurgent disease may remain a problem (Health Protection Agency 2011).
Preventing epidemics of vaccine-preventable diseases requires stable and well-functioning public health systems that can anticipate and detect problems
and with the resources to deal with problems when they arise. Those advocating policies that fragment public health functions, for whatever reason, should consider the possible unintended consequences that may accompany such change (McKee et al. 2011).
Measles
Measles vaccination
The combined vaccine against measles, mumps and rubella (MMR) was intro-duced in most European countries around 1980, taking the place of the single measles vaccines that had been used from the late 1960s. As will be discussed in Chapter 7, measles cases declined rapidly as vaccine coverage increased.
However, in 1998, an early report about children with chronic colitis and regres-sive developmental disorders, which mentioned a possible association with the MMR vaccine, was published in the Lancet (Wakefi eld et al. 1998). A press con-ference accompanied the report, at which the lead author, Andrew Wakefi eld, recommended that parents should give their children a single measles vaccine instead of MMR, going far beyond the suggested hypothesis in the report. The MMR vaccine scare was born.
After the events surrounding Wakefi eld’s unsubstantiated recommendations to parents, the United Kingdom’s MMR coverage rate dropped from 99% in 2001 to 80% in 2003 (Parliamentary Offi ce of Science and Technology 2004).
There were 59 reported measles cases in 1998 just before the scare began, and 460 in 2003. Although the decline in cover rate is evident (Fig. 6.3) and a few hundred measles cases occurred, the incidence per 100,000 still remained very
Figure 6.3 Measles incidence and vaccine coverage (MMR) in the United Kingdom and Sweden
Source: WHO Regional Offi ce for Europe 2012 Notes: INC, incidence; COV, coverage
low. Since then, multiple inquiries and investigations have been conducted and the original case series was retracted. Wakefi eld was struck off the register of the General Medical Council after being found guilty of serious professional misconduct, and many subsequent studies have found no evidence of a link between MMR and autism (Institute of Medicine 2004; Honda et al. 2005).
However, the repercussions of these events continue; vaccine coverage remains in parts of the United Kingdom suboptimal and sporadic measles outbreaks still occur.
Vaccine scares are not new, and the MMR scare is unlikely to be the last one.
The United Kingdom was disproportionately affected by this scare, compared with Sweden for example, and vaccine coverage rates in the United Kingdom (86% in 2009) remain lower than the EU average (92% in 2009) (World Health Organization 2012). The only other European countries that experienced a notable decline in MMR coverage were Malta and Ireland, both countries with close cultural connections to the United Kingdom. The relatively constant level of circulating measles cases in France, which has never had uniformly high coverage rates, together with the events in the United Kingdom, contributed to a European resurgence of measles such that in the fi rst eleven months of 2011 there were over 30 000 cases of measles known in the EU; this is three to fi ve times higher than in the same period in 2007–2009 (ECDC 2011).
The traditionally lower coverage rates for measles in France may be related to the fact that it has a private and decentralized public health system (World Health Organization 2011) which can make large-scale public health programmes diffi cult to implement (see Chapter 7). But regulated central-ized systems such as that in the United Kingdom can present disadvantages when there is a loss of public trust in government (Schmitt et al. 2003). The policy response by the United Kingdom Department of Health largely consisted of public information and education campaigns that reiterated the safety of MMR and ‘catch-up campaigns’ to improve coverage rates, together with pay-ments to general practitioners to encourage high vaccination coverage rates (Parliamentary Offi ce of Science and Technology 2004).
Contemporaneous political and social events in the United Kingdom, for example the United Kingdom Government’s response to the emergence of bovine spongiform encephalopathy (BSE) – laid the groundwork for a loss of public trust in offi cial advice (McKee and Lang 1996). However, the specifi c policy responses to public concerns about the safety of MMR were also inadequate, mainly because the most important visible participants in vaccination, the parents, became alienated. This problem occurred for several reasons.
The fi rst reason for concern was a lack of information. Mechanisms for detect-ing rare or less rare adverse effects resultdetect-ing from vaccines in the United Kdetect-ingdom were inadequate. Large-scale vaccine effi cacy studies do not always detect rare effects, as was demonstrated by the eventual withdrawal of two of the three MMR vaccines that were available in 1992 (Immravax and Pluserix) because of rare asso -ciations with aseptic mumps meningitis, which were only noted once the vac-cines were in widespread use. A systematic review of studies examining adverse effects of MMR compared with single vaccines (Jefferson et al. 2003) found limited evidence on safety of MMR compared with single component vaccines, suggesting that the existing studies were inadequate or insuffi cient. The authors
concluded that improvements were needed in vaccine safety studies. Indeed, the methods for collecting, disseminating and learning from reported adverse outcomes associated with MMR, pre- and postmarketing, were inadequate.
Second, there was no safe space to discuss uncertainty. The media furore following the Wakefi eld case series made it more diffi cult for researchers to raise hypotheses to be tested in further investigations lest this raised additional fears and thus unintended consequences for vaccination rates. Open debate and questioning of the causes of disease and the effects of vaccines became nearly impossible as personal attacks on the key actors increased and media scare stories multiplied. The scientifi c and public health community, together with the government, seemed reluctant to engage directly with parents who expressed doubts about MMR. Nor was there much public engagement on the uncertainties surrounding the cause of autism, a condition of still uncertain aetiology that affects 1% or more of the school-age population. Instead of engaging and rapidly rebutting Andrew Wakefi eld’s recommendations, the Department of Health seemed fear ful that to do so might legitimize his claims, given the climate of distrust in government. Their decision may have inadvertently enabled Wakefi eld to be perceived as a unique sympathetic fi gure ready to listen to parents whose children had developed autism, eager to help them to fi nd an explanation. The failure by the academic community and the government to engage openly with the public gave the impression of a lack of compassion in the eyes of many anxious parents.
Third, social memory of measles and its potential dangers had faded, as it had for many infectious diseases that have been well controlled by successful vaccination programmes. Mothers said they were more infl uenced by the perceived risk of the MMR vaccine than those of measles (Parliamentary Offi ce of Science and Technology 2004). The response to this shift in risk perception lacked a suffi ciently convincing narrative. Presentations of statistics about likelihoods of disease complications, weighing them against vaccine reactions, may be technically correct but failed to engage and persuade parents. Guidelines on communication in science and health were subsequently issued (Social Issues Research Centre, the Royal Society and the Royal Institution of Great Britain 2001), but while the report noted the importance of credible sources, it focused on scientists and other fi gures of authority and were not about engaging with patients. There was little emphasis on the possible benefi ts of collaborating with other sources that could be more credible to the public. The Science Media Centre (www.sciencemediacentre.org) was founded as an independent organisation to facilitate communication between the scientifi c community and the media, however not directly with the public. The web sites of the United Kingdom Health Protection Agency and the NHS (Health Protection Agency 2012; NHS Choices 2012) have written information for parents, including a fi lm of a parent’s account of experience with measles, but they are strongly linked to the NHS name and logo (and therefore, to some parents, to a less-credible source of advice on vaccines). They have also yet to engage fully with modern information technology (Macario et al. 2011). In Canada, the British Columbian Centre for Disease Control tackled these problems head-on, instituting a parent-led forum for telling stories about what had happened to their children, for sharing experiences and discussing fears (Macario et al. 2011).
Fourth, there was an inconsistency in the approach to policy that further undermined the public’s trust. The United Kingdom Government had seen
‘choice’ as an important element of its market-focused policy of the NHS for some years. However, when it came to MMR, this principle did not apply.
The Department of Health argued that the safety record of MMR was well established while that of single measles vaccines was not; that a single-vaccine regimen would leave children unvaccinated for longer periods of time; and that failure to complete the course, therefore, increased the risk of disease compared with the standard vaccine schedule. A poll of parents showed that 64% thought that both MMR and single measles vaccinations should be available. Some professionals agreed (Parliamentary Offi ce of Science and Technology 2004).
The problems caused by the perceived policy of ‘choice – but only on my terms’ – was compounded when the Prime Minister refused to confi rm that his young son had received MMR. In addition, concerns about confl ict of interest infl uenced many people when it emerged that general practitioners received incentive payments for meeting their vaccination targets.
Finally, there was a lack of suffi cient planning and coordination about how the hypothesis presented in the paper would be presented to the public. Andrew Wakefi eld wrote to the Department of Health and the Chief Medical Offi cer to discuss his plans for recommending single vaccines. The Department of Health, therefore, had advance notice of the events of the press conference at which Wakefi eld went beyond the published paper, but it took no action. Meanwhile the Lancet, which published the original paper, had not been involved in the authors’ discussions with the Department of Health and was caught unaware when the recommendations to split the vaccine were made at the press conference. The lesson here is that all the actors involved in an important paper with relevance for public health, even an early report raising hypotheses for further investigation, should be involved in planning and preparing for publication to ensure that there are no surprises and that the message is crafted as carefully as possible.
What general lessons can be learned from the MMR scare?
Vaccination, perhaps uniquely among public health interventions, can inspire fear. It involves administering an intervention to a healthy child to prevent an illness that may not happen. There are tensions between the interests of the child and the parents’ autonomy over their child, and between consideration of the individual and the population (Finn and Savulescu 2011). The success of vaccination programmes depends on confi dence, social good will and a bond of trust between the scientifi c and medical communities, government and the public. These essential invisible threads were strained to breaking point in the United Kingdom.
What can be done? There seems still to be an unwillingness to engage openly in discussion when there is public doubt, or to acknowledge the loss of public trust in institutions. This is fuelled by a reluctance of offi cial authorities to hear the other side of a story. Parents and other members of the public have legitimate concerns and questions that deserve to be addressed openly and honestly. Uncertainty can and should be acknowledged. More compassion
for the plight of parents and patients is needed. Furthermore, to address the uncertainty, a thorough, systematic and reliable means of collecting data on
for the plight of parents and patients is needed. Furthermore, to address the uncertainty, a thorough, systematic and reliable means of collecting data on