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Neglected tropical : equity and social determinants

1 8 Jens Aagaard-Hansen and Claire Lise Chaignat

Contents Water, and household-related factors 147 Environmental factors ...... 147 8.1 Summary ...... 136 Migration ...... 148 8.2 Introduction ...... 136 Sociocultural factors and gender ...... 148 Neglected tropical diseases...... 136 as a root cause of NTDs...... 148 Equity aspects of neglected tropical diseases . 138 8.6 Implications: measurement, evaluation Methodology ...... 138 and data requirements ...... 150 8.3 Analysis: social determinants of Risk assessment and surveillance...... 150 neglected tropical diseases ...... 139 Monitoring the impact ...... 150 Water and sanitation...... 139 Knowledge gaps ...... 151 Housing and clustering ...... 140 Managerial implications and challenges . . . 152 Environment ...... 141 8.7 Conclusion ...... 152 Migration, disasters and conflicts ...... 141 Sociocultural factors and gender ...... 142 References ...... 153 Poverty ...... 143 Table 8.4 Discussion: patterns, pathways and Table 8.1 Relationship of the 13 NTDs to entry-points ...... 144 the selected social determinants and the five 8.5 Interventions ...... 146 analytical levels...... 145

1 The authors would like to acknowledge the valuable input of reviewers (especially Susan Watts and Erik Blas), and Birte Holm Sørensen for her comments regarding the potential of social determinants as indicators of multiendemic populations. Also thanks to staff members of the WHO Department of Neglected Tropical Diseases for their support and advice.

Neglected tropical diseases: equity and social determinants 135 8.1 Summary Consequently, poverty should be addressed both in gen- eral poverty alleviation programmes for NTD- The neglected tropical diseases (NTDs) are very het- populations and more particularly by ensuring afford- erogeneous and consequently the analysis of inequity able treatment. and social determinants is extraordinarily complex. The result is a pattern where the various NTDs are clus- Action 6: Setting up risk assessment and sur- tered in different ways. This leads to six recommended veillance systems. The NTDs are characterized by actions, all of which relate mostly to preventive and their focality determined by the complex combinations promotive measures. In each case the right of vulner- of environmental and social determinants. Pockets of able and marginalized groups to be heard and to exert multiendemic population segments are likely to “disap- political influence should be ensured. pear” within statistical averages and must be identified as a means to address inequity and in order to direct Action 1: Addressing water, sanitation and house- curative or preventive interventions to NTD hot spots, hold-related factors (the “preventive package”). thereby increasing efficiency. Cross-disciplinary risk The analysis shows overwhelming evidence of how the assessment and surveillance systems should be estab- intermediary social determinants of water and sani- lished based on combinations of epidemiological, tation, and housing and clustering, determine NTDs. environmental and social data, providing not only early Consequently, there is a need to address these risk fac- warnings for , but also evidence for long- tors in endemic communities to provide sustainable term planning under more stable conditions. prevention for clusters of NTDs.

Action 2: Reducing environmental risk factors. 8.2 Introduction Environmental factors are essential determinants for many of the NTDs. These factors are often introduced by , either directly or indirectly. Planning based Neglected tropical diseases on health impact assessments for new projects and miti- gating revisions of existing schemes are needed in order This chapter considers the so-called neglected tropi- to control NTDs. cal diseases (NTDs) (1–3), focusing on the 13 diseases covered by the World Health Organization (WHO) Action 3: Improving health of migrating pop- Department of Neglected Tropical Diseases: Buruli ulations. Migration encompasses the movements of , Chagas , , dengue (including nomads, labour migrants, people subjected to forced dengue haemorrhagic fever), , lymphatic resettlement and refugees from natural disasters or , African , , armed conflict. Their movements influence exposure , , , soil-transmitted and vulnerability to some NTDs, and access to health helminths and . From a biomedical perspec- care systems is reduced. The particular NTD issues that tive, the 13 NTDs are very heterogeneous. Box 8.1 relate to these groups should be addressed in ways that gives a brief description of each disease. are tailored to local conditions (patterns of morbidity, mobility, environmental and sociocultural factors). An aggregated measure of 11 of the 13 NTDs (omit- ting cholera and ) ranks sixth among the Action 4: Reducing inequity due to sociocul- 10 leading causes of disability-adjusted life years,2 ahead tural factors and gender. Sociocultural factors, of and (4 ). Estimates are, how- which are often closely linked to gender roles, interact ever, uncertain, and recent studies argue that incidences with NTDs in various ways. In some cases NTDs incur and impacts of schistosomiasis (5 ) and trachoma (6 ) added burdens due to stigma, isolation and other neg- have been underestimated. Researchers have mapped ative consequences. These factors may also reduce the the global distribution of trachoma (7 ) and lymphatic acceptability of health services, leading to differential filariasis, onchocerciasis, schistosomiasis and soil-trans- health care outcomes. There are unexplored potential mitted helminths (8 ). Brooker et al. (9 ) have attempted advantages in addressing these issues from a multidis- to map helminth in sub-Saharan . De ease perspective. Silva et al. (10 ) add an interesting time dimension to the analysis of soil-transmitted helminths, showing the Action 5: Reducing poverty in NTD-endemic trend 1994–2003. populations. Poverty emerges as the single most con- spicuous social determinant for NTDs, partly as a structural root determinant for the intermediary social determinants and partly as an important consequence 2 Disability-adjusted life years (DALYs) reflect a combination of the of NTDs, either directly (leading to catastrophic health number of years lost from early and fractional years lost expenditure) or indirectly (due to loss of productivity). when a person is disabled by illness or injury.

136 Equity, social determinants and programmes BOX 8.1 Brief description of neglected tropical diseases

Buruli ulcer is caused by a bacterium (Mycobacterium ulcerans) and is clinically characterized by big ulcers that lead to disfiguration and sometimes loss of limbs. There are indications that infection is based on direct contact to the environment, without vectors or reservoirs playing a role. Treatment is expensive and involves surgery and hospitalization. is caused by a protozoon ( cruzi). It is transmitted by various of “kissing bugs” () that live either in houses or in forests, or via . Domestic and wild play important roles as animal reservoirs. The symptoms develop gradually, mainly affecting the and the intestines. The main control measure is control. The disease is confined to Latin America. Cholera is caused by different types of Vibrio . Water and food contaminated with human faeces are the main sources of infection. Cholera cases are characterized by profuse diarrhoea, and rehydration is the main treatment. Cholera is present worldwide though rarely in parts where the sanitary infrastructure is of adequate standard. Dengue fever is caused by an and transmitted by mosquitoes ( aegypti). The symptoms are fever, , musculoskeletal pain and . If the patients are reinfected with another serotype there is a risk of dengue haemorrhagic fever. Within recent decades the disease has spread from to tropical areas in all parts of the world. Dracunculiasis (guinea- disease) is caused by a worm (), the larvae of which enter the human body through drinking water containing the tiny crustaceans that carry the larvae. Adult female erupt from the skin to shed eggs. Filtering water and surgical removal of adult worms are important control measures. Though much progress has been made, there is still a handful of endemic countries in Africa. Human (sleeping sickness) is caused by various Trypanosoma spp. The disease is transmitted by tsetse (Glossina spp.), and various types of animals (, and antelopes) serve as reservoirs. The central nervous system is affected and treatment with drugs is difficult and expensive. Control is largely aimed at vectors. Leishmaniasis is caused by various ( spp.) transmitted by female ( and spp.). Symptoms range from cutaneous or mucocutaneous cases to lethal visceral cases (in known as kala-azar) and treatment is difficult. Apart from South Asia, animal reservoirs include and canines. Leishmaniasis is widespread in tropical and subtropical areas. Leprosy is caused by a bacterium () that affects the skin and nerves. The disease develops slowly and can lead to severe dysfunction and disfiguration. The main route of infection is from person to person, though that has been disputed recently. No vectors are involved. Multidrug treatment has led to a rapid decline in . Lymphatic filariasis is caused by worms (, Brugia spp.) Mosquitoes serve as vectors. Adult worms can block the lymph vessels resulting in chronic symptoms such as swelling of the leg (), scrotum (hydrocele) or other body parts, but stages may also cause serious illness. Treatment is through drugs or surgery. The disease is widespread in Asia, Africa and Latin America. Onchocerciasis (river blindness) is caused by a worm (). It is transmitted by blackflies (Simulium spp.), which breed close to running streams. Patients can develop blindness and severe skin symptoms. The disease occurs mainly in Africa (where transnational campaigns of mass drug administration and have achieved significant results), and also in Latin America.

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Neglected tropical diseases: equity and social determinants 137 Continued from previous page

Schistosomiasis is caused by various types of worms, and eggs are spread via or faeces. species serve as intermediate hosts for the larvae, which penetrate human skin in contact with infected water. Control measures include inexpensive drugs, sanitation, snail control and avoidance of contact with infested water. The disease is found in tropical and subtropical areas of Asia, Africa and Latin America. Soil-transmitted helminths mainly comprise four types of worms: , and the hookworms and . The adult worms live in the intestines and the eggs are shed in the faeces. Cheap and effective drugs are often distributed in mass drug administration campaigns. Soil-transmitted helminths are found worldwide where there is poor sanitation. Trachoma is caused by an intracellular, bacterium-like organism ( trachomatis). It infects the eyes and is the leading cause of preventable blindness. It is closely linked to low , presence of domestic animals and flies. Trachoma is found in Africa, Asia, Latin America and the . Control measures include the SAFE strategy (see below).

Many of the NTDs are characterized by their focality some NTDs (for example cholera and leprosy) are not (11–13). Thus, morbidity and mortality may vary signif- limited to specific climate zones. However, as a short- icantly from one place to another due to different local hand, the term points to where most of the NTDs factors. This has several important implications. First, it (as well as most disadvantaged people) are found. The means that pockets of high burden of NTDs are likely NTDs are among what Hunt calls “type III diseases” – to “disappear” within statistical averages at higher (pro- the very neglected diseases that “receive extremely little vincial or national) levels. Second, it means that curative research and development, and essentially no com- or preventive interventions will become more efficient mercially-based research and development in the rich if they can be focused on the hot spots, particularly as countries” (15 ). populations at these locations are likely to be burdened by several NTDs at the same time, further increasing the efficiency of multidisease interventions. Third, from Methodology an equity perspective it is mandatory to find the most affected populations in order to ensure that “the health The present chapter is based on an extensive litera- of the most disadvantaged groups has improved faster ture review. An initial search in PubMed using terms than that of the middle- and high-income groups” (14 ). relevant to social determinants and NTDs gave 4401 references, of which 250 were deemed relevant; these were supplemented by secondary identification of Equity aspects of neglected tropical sources using their bibliographies, and key references diseases provided by WHO staff members of relevance to their particular fields. The term “neglected” has many meanings. Seen from a political public health perspective, it is an indication The subsequent analysis was based on an article assess- that these diseases were only recently “rediscovered” ment matrix that was developed in order to ensure a after having been overshadowed for many years by systematic and transparent approach when reading the “big three” (HIV, malaria and tuberculosis). From the selected articles. The analysis registered points of an equity perspective, NTDs are especially found in importance in relation to four main aspects: disadvantaged populations. Thus, more than 70% of • the five analytical levels: socioeconomic context countries and territories affected by NTDs are low- and position, differential exposure, differential vul- income and lower middle-income countries, and 100% nerability, differential health care outcomes, and of low-income countries are affected by at least five differential consequences (16); NTDs (3 ). This is partly because of the association with • the intervention aspects: availability, accessibility, various combinations of social determinants, as will be acceptability, contact coverage, diagnostic accuracy, described below, and partly because these populations provider compliance, consumer adherence, replica- are usually not in a position to draw the attention of bility, sustainability, scalability, feasibility (political, decision-makers to their problems and attract resources. economic and technical) (16); The focality of most NTDs also contributes to this • the 13 NTDs; neglect. The term “tropical” is not absolutely correct as • the relevant social determinants.

138 Equity, social determinants and public health programmes BOX 8.2 Social determinants of neglected tropical diseases considered in this chapter

 Water and sanitation  Housing and clustering (including building design, peri-domestic area and crowding of people)  Environment (including ecological and topographical factors, land coverage, climatic change and water resource development schemes)  Migration (including refugees, nomads, migrant workers and resettlers)  Disasters and conflicts (comprising elements of migration and breakdown of health care systems)  Sociocultural factors  Gender  Poverty (including inadequate income, subsistence and wealth)

The analysis pivots around combinations of these four (, schistosomiasis and soil-transmitted axes. The task is complex; the inclusion of 13 very helminths), adults (human African trypanosomiasis), heterogeneous NTDs, each with different social deter- elderly (blindness due to onchocerciasis or trachoma) minant profiles, calls for a very broad approach, while or patients infected early in life with overt manifesta- limitations of space necessitates a strict focusing on rel- tions presenting in later adult age (). atively few social determinants. Also, the chapter has However, several of these social determinants, for few references from Europe and central Asia. This is a example occupation and , will be touched reflection of the literature review, but may not be a on in passing in the text. fair picture of the realities. Further research may rec- tify that. Many of the social determinants are not only coexist- ing but frequently also more or less overlapping (17, 18). As the 13 NTDs are all infectious (and to a large extent 8.3 Analysis: social vector-borne), they are more dependent on the exter- determinants of neglected nal physical or biological conditions than many other diseases. Thus, factors such as water and sanitation, tropical diseases housing and clustering, and environment play central roles in the present analysis and may actually be seen Box 8.2 provides an overview of the social determi- as biosocial determinants. However, in spite of the very nants of NTDs that will be discussed in this chapter. In material characteristics, even these determinants are this list, water and sanitation, and housing and cluster- intricately integrated with sociocultural and economic ing, and to a certain extent environment, can be termed factors. In this section the selected social determinants intermediary, whereas the rest are structural. The social will be illustrated by some of the NTDs for which they determinants were selected based on the literature are especially important. review, either because there is substantial evidence that they play a role for many of the diseases (as in the case of poverty) or because they are necessary for under- Water and sanitation standing a group of NTDs (as in the case of housing and clustering). Some determinants are so interwoven In relation to NTDs, water can have both negative and that it would be artificial to separate them in the anal- positive connotations. It can act as a source of infection ysis (for example migration, disasters and conflicts; and or as a breeding ground for vectors; on the other hand, sociocultural factors and gender). adequate quantity and quality of water supply is vital for hygiene and the avoidance of infection. Inadequate There are major social determinants that are not sanitation and consequent exposure to human faeces included or not fully covered in this chapter, either plays a key role in the of certain diseases because they were not conspicuous in the literature (19 ). “The right to water, derived from the rights to searched, or because of limitations of space. These health and to an adequate standard of living … includes include , urbanization, education, social class, an entitlement to sufficient, safe, acceptable, physically religion and occupation. Most NTDs have distinct age accessible and affordable water for domestic and per- profiles, with higher either among children sonal uses” (15 ).

Neglected tropical diseases: equity and social determinants 139 The importance of water and sanitation as a determi- Thus, inadequate water and sanitation are well-docu- nant for cholera was forcefully demonstrated by John mented causes of many of the NTDs, as exemplified Snow in London in 1848 with the closing of the Broad above in the cases of cholera, dengue fever, dracunculia- Street water pump, though the authorities were reluc- sis, lymphatic filariasis, schistosomiasis, soil-transmitted tant to accept the evidence (20 ). Control measures that, helminths and trachoma. Water and sanitation can from a biomedical perspective, seem rational may also be seen as key intermediary social determinants that meet strong opposition among lay people due to inap- in turn are influenced by some of the more struc- propriate campaigns and political tensions (21 ). Lack of tural social determinants, especially poverty. Water and access to safe water and sanitation may result in cholera sanitation will be addressed below in relation to recom- epidemics among refugees (22 ). In South Africa, a chol- mended action 1. era was found to result from reduced access to clean water following the introduction of user fees in privatization schemes (23 ). Housing and clustering

The risk of contracting dracunculiasis is closely related This subsection considers the physical characteris- to the dynamics of water contact at household and tics of the house, including materials and design; the village level, as various daily chores such as fetching peri-domestic area, including kitchen gardens, vegeta- water, working in distant fields and trading all influence tion, solid waste dumps and domestic animals; and the access to safe drinking-water (24 ). Guinea-worm dis- clustering or crowding both within the home (number ease was considered one of the indicators for access to of people per room or area) and the neighbourhood safe drinking-water of the Water and Sanitation Dec- (proximity to neighbours). Selection of new hous- ade (1981–1990). ing sites away from vector habitats, and improved and properly maintained housing, are important elements For control of trachoma, the SAFE (surgery, antibiotics, of environmental management for vector control (36 ). facial cleanliness, environmental improvement) strategy Adequate housing is not only a key factor for health is based on both curative and preventive measures. The but also an essential human rights issue (15 ). inclusion of facial cleanliness demonstrates the impor- tance of access to adequate water supply not only for The importance of this intermediary social determi- drinking but also for washing (25–27). nant in Chagas disease control is very well documented (37 ). In Cuernavaca, Mexico, adjacent garden areas and A number of significant literature reviews have been vacant peri-domestic space and occurrence of squirrels, conducted on water and sanitation in relation to diar- opossums and pigs around the house were risk factors rhoeal diseases, some of which are also relevant to for Chagas disease because they increased the preva- NTDs (28 ). Water for personal and domestic hygiene lence of the vector Triatoma pallidipennis (38 ). In Costa has been found important in reducing rates of , Rica, a dirt floor (as opposed to cement) and storage of diarrhoea, schistosomiasis and trachoma, and sanitation firewood close to the house were shown to be direct facilities decreased diarrhoea morbidity and mortality risk factors for Chagas disease (39 ). Experience from as well as the severity of (29 ). It is illustrates how houses can be upgraded at important to distinguish between public and domestic low cost, using long-term solutions based on economic domains of disease transmission, as the required inter- feasibility and community participation (40 ). ventions are different (30 ). A review of soil-transmitted helminths and schistosomiasis shows that “when sani- Several studies have shown that housing and cluster- tation improvements are made alongside deworming, ing are significant risk factors for leishmaniasis. A study the results obtained last longer” (31 ). The importance in found that subjects whose homes had exte- of water and sanitation for schistosomiasis transmis- rior walls of cement or brick had a disease risk only sion and control has also been reviewed by Bruun and 40% that of persons whose homes had wooden or cane Aagaard-Hansen (32 ). walls (41 ). In , India, not only housing material but also in-house granary and presence of bamboo tree In some cases vectors may breed in domestic water near the house were found to be risk factors (11 ). Using sources. This is particularly important for the mos- a sequence of cross-sectional surveys and spatial anal- quito vectors of dengue fever and lymphatic filariasis. yses in a rural community in , a study of a Inadequate public water supply, either through water clustering of cases of (kala-azar) wells in northern (33 ) or piped systems in the showed that proximity to previous cases was a major (34 ), was found to be a factor in risk factor (42 ). inappropriate water storage providing breeding sites for the dengue fever vector. Reduction of breeding sites Environmental improvement is a component of the for culicine vectors in pit latrines is a possible means of SAFE strategy for control of trachoma (see previous controlling bancroftian lymphatic filariasis 35( ). subsection) (25 ). Crowding and various peri-domestic

140 Equity, social determinants and public health programmes factors that relate to the propagation of the pop- historical overview of human African trypanosomia- ulation and cattle ownership play an important role sis illustrates the close relationship between the disease in trachoma transmission (6, 43). A review by Marx and the environment (52 ). concludes that “support for household clustering of trachoma and transmission of disease, while not In , the spatial distribution of visceral leishmani- always consistent, appears strong” (44 ). asis shows that “many of the regions with highest rates lie near forest areas and pastures, which suggests that Soil-transmitted helminth have also been transmission of infection to the human population may associated with house construction, and in India originate, at least in part, from a sylvatic cycle” (53 ). crowding has been shown to be a risk factor for Ashford’s review of leishmaniasis provides a systematic Ascaris infection (45 ). There is an ongoing debate as to overview of the complex variation in mammal reser- whether soil-transmitted helminths are concentrated in voir hosts, vectors and Leishmania species in different certain households due to environmental or biological parts of the world (54 ). The article draws implications (genetic) factors. for control and makes a strong case for the importance of biological expertise. Environmental variables such as For leprosy, crowding is again an important factor, and temperature and soil type are the most important eco- both the household itself and the neighbourhood have logical determinants of the distribution of leishmaniasis been shown to be arenas for transmission (46 ). There is vectors in (55 ). a strong inverse relationship between socioeconomic development (and more particularly improved housing Distance to outdoor sources of infection may play a and reduced crowding) and leprosy (47 ). role for onchocerciasis (56 ). Construction of large dams for hydroelectricity and other developmental projects To conclude, housing and clustering play a major role “may reduce or alternatively, as with spillways, increase in exposure to several of the NTDs. In some cases (for the breeding sites of vectors” for onchocerciasis (57 ). example Chagas disease, leishmaniasis, soil-transmit- ted helminths and trachoma) the characteristics of the In a strong correlation has been shown house and the peri-domestic area influence the presence between improved water supply and decreased schisto- of vectors, whereas in others (for example leishmania- somiasis prevalence, whereas improved sewage disposal sis, leprosy, soil-transmitted helminths and trachoma) did not have the same effect (58 ). The relationship crowding or clustering facilitate direct exposure to the between water resource development schemes and via infected cohabitants. Housing and clus- schistosomiasis is well documented (59, 60). tering can be seen as an important intermediary social determinant for many of the NTDs, having direct may have considerable consequences causal links to poverty as a structural social determi- for the global distribution of NTDs and other diseases nant. This social determinant will be addressed below (61 ). Based on predictive modelling and spatial map- in relation to recommended action 1. ping technology, Zhou et al. (62 ) have projected that an additional 8.1% of the area of will be prone to schistosomiasis transmission by 2050. Environment Thus, environment is a strong biosocial determinant Environment is defined broadly, comprising conditions for many NTDs, predominantly through exposure, of soil, , fauna and climate as well as water and this will be addressed below in relation to rec- resource development schemes constructed by humans, ommended action 2. Chagas disease, cholera, human and can thus be viewed as a biosocial determinant. It is African trypanosomiasis, leishmaniasis, onchocercia- impossible to draw a clear distinction between “peri- sis and schistosomiasis have been chosen to illustrate domestic area” and “environment”, so there is a certain the case. There are certain indications that even Buruli overlap between this social determinant and housing ulcer is linked to environmental risk factors. and clustering. Environmental change (climate, water resource development schemes and ) is a major aspect of globalization (48 ). Migration, disasters and conflicts

Chagas disease control is based on an understanding of “The movement of people between countries now sylvatic and domestic transmission patterns of the Tri- accounts for approximately 130 million people (2% atominae vector (37 ). Altitude is an important factor for of the world’s population) per year”, and in “the mid the distribution of this vector for Chagas disease (49 ). 1980s, one billion people, or about one sixth of the Outbreaks of cholera in Bangladesh have been shown world’s population, moved within their own countries” to be closely related to climatic factors (50 ) as well (48 ). Migration may be temporary or permanent and as a number of environmental factors (51 ). Maudlin’s includes the movements of nomads, refugees, labour

Neglected tropical diseases: equity and social determinants 141 migrants and people subjected to forced resettlement. in countries where these diseases are not prevalent are Examples from show how water resource often ill-equipped to deal with their introduction” (75 ). development schemes lead to both planned and unplanned migration (63 ). Refugees may flee to neigh- Migration is an important factor for schistosomiasis bouring countries or to other areas within their own (76 ). The increasingly mobile population poses a chal- country (internally displaced persons), and the latter are lenge to schistosomiasis control in China (77 ), as does often more vulnerable because they are not covered the number and migration of livestock in Yunnan Prov- by international humanitarian laws and organizations. ince, China (78 ). Health services, including control programmes for migrating populations, face particular logistic problems Urbanization includes elements of migration and and are usually inadequate or absent (64–66). Negative clustering, as well as inadequate infrastructure. Urban- health implications of war have been shown in Uganda ization has been found relevant for many NTDs, and Sudan (67 ). Breakdown of health systems during including Chagas disease in Brazil (79 ), human Afri- conflict may be coincidental or purposive, as in the case can trypanosomiasis in the Democratic Republic of the of the Contra War in Nicaragua in the 1980s, when Congo (73 ), leishmaniasis in Latin American (80 ) and health facilities and staff were directly targeted (68 ). schistosomiasis (76 ).

A historical overview of cholera transmission in Africa To summarize, migration of human (and in some cases during the seventh (1970–1991) shows the animal) populations and trade are highly relevant to association with migration and refugees (69 ). Cholera at least half of the NTDs, including cholera, dracun- epidemics have been associated with the conflict- culiasis, human African trypanosomiasis, leishmaniasis induced movement of refugees from Mozambique and schistosomiasis, and can lead to the introduction to Malawi (70 ) and from Rwanda to the Democratic of into new areas or exposure of vulnerable Republic of the Congo (48 ). populations to new risk zones. At the structural level these population groups are often politically margin- The trade and movement of goods can also lead to the alized. Health services are usually absent or inadequate dissemination of parasites and vectors (61, 64). There is for migrating populations and in cases of natural disas- evidence for the spread of from north- ters or conflicts there is often a further breakdown of ern Asia to North America via used tyres (71 ). This has health care services leading to differential health care implications for transmission of dengue fever and other outcomes. This social determinant will be addressed . below in relation to recommended action 3.

Nomadism often results in higher prevalences of tra- choma (due to proximity to cattle) and dracunculiasis Sociocultural factors and gender (due to unsafe water), whereas helminth infections are relatively rare (as the nomads leave their waste behind). This subsection encompasses both sociocultural factors The nomads are able to avoid health risks, but they may and gender, given that gender roles are culturally con- also be potential active transmitters of disease (66 ). structed. Frequently they also determine occupation differentiation. It has been suggested that the conceptu- The first human African trypanosomiasis cases in alization of women’s health should be broadened from southern Ghana appeared due to population move- the traditional concentration on reproductive aspects ments (48 ). Internal or regional conflicts result in (81–83). Rathgeber and Vlassoff (84 ) have proposed a dysfunctional health care services and migration and framework for gender-sensitive research in relation to have consequently led to recrudescence of human Afri- tropical diseases, which has been further applied by can trypanosomiasis (52, 72). The case of urban human Vlassoff and Manderson (85 ). African trypanosomiasis in Kinshasa originated from influx of migrants due to conflict (73 ). Some studies in Africa have found an association between prevalence of dracunculiasis and particular In 1997, an outbreak of anthroponotic cutaneous leish- ethnic groups (86 ), and dracunculiasis detection rates maniasis occurred in an Afghan refugee settlement in are influenced by structural differences between the north-western Pakistan, and 100 000 deaths resulted Fulani and Yoruba groups in Nigeria (87 ). In Nigeria, it from visceral leishmaniasis in southern Sudan due to has also been illustrated how the dynamics of daily life migration (48 ). Possible factors causing an epidemic of and coping mechanisms at household and community in Khartoum included migra- level influence the transmission of dracunculiasis 88( ). tion from western Sudan combined with an increase in Cattand et al. find that, for human African trypano- the reservoir population, urban expansion and somiasis, “men are affected at nearly twice the rate of conducive climatic conditions (74 ). With regard to pop- women” (89 ). ulation movements and leishmaniasis, “health services

142 Equity, social determinants and public health programmes Regarding the gender aspects of leishmaniasis, Cattand in all four cases because of the stigmatization associ- et al. (89 ) report a much higher incidence among ated with chronic physical disability. Gender plays a males than females, but a community study of cutane- conspicuous role for many of the NTDs, and there is ous leishmaniasis in rural found no gender considerable variance in morbidity and mortality rates difference, as opposed to the official ministerial statis- for males and females by disease. Thus, males bear the tics (90 ). Several others point to underreporting and brunt of human African trypanosomiasis and schisto- delayed access to diagnosis and treatment for female somiasis due to exposure, whereas women suffer more cases as reasons for the apparent differential (85, 91, 92). from leprosy (stigma) and trachoma (blindness). For leishmaniasis, some studies report higher prevalence For leprosy, stigma and other negative sociocultural among males, while others point to underreporting consequences often play an important role (93–96). A and inadequate diagnosis and treatment for women. review of leprosy from a gender perspective found that At the structural level both ethnicity and gender are women were generally more afflicted in terms of lower closely linked to differential political influence and case detection in rural than in urban and tribal areas access to resources. The aspects mentioned here will be and that women had a relatively higher frequency of addressed below in relation to recommended action 4. reversal reactions, while males had a higher incidence of deformities (97 ). In India, female leprosy patients were more affected in their daily life and in their inter- Poverty action with the community (94, 96). A review of the socioeconomic impact of lymphatic filariasis found Poverty can be analysed at many levels, from global, varying degrees of stigmatization in different parts of through national, to community and household units the world (35 ). of analysis. Poverty can be viewed either from an abso- lute perspective, where simple lack of resources has Onchocerciasis skin disease has different prevalences serious consequences, for example inability to pay for in different ethnic groups (Yoruba and Fulani) in Oyo health services; or from a relative perspective, which State, Nigeria, and females had a significantly higher takes greater account of relative economic inequity in prevalence of skin conditions caused by onchocerciasis society. In the present chapter the former approach is (56 ). Among the Mande in Guinea, onchocerciasis has a adopted, unless explained otherwise. Costs incurred strong influence on mobility, marital status and occupa- through illness can be either direct (treatment, drugs, tion capability (98 ). Males are generally more affected tests) or indirect (transport and food for patients and than females, which has been ascribed to the “relatively caregivers, loss of earnings). “Catastrophic health high, innate resistance to the infection in females” (57 ). expenditures” can occur when the cost entailed by a disease permanently worsens a family’s financial liveli- Most studies indicate higher prevalence of schistosomia- hood (105, 106). sis for males than females, presumably due to higher exposure. Morbidity does not therefore appear to be A review of the socioeconomic implications of Buruli influenced by sex apart from its possible disruption of ulcer in the Ashanti region, Ghana, concluded that pregnancy and other “maternal functions” (99 ). Stud- indirect costs accounted for 70% and direct costs only ies from Sudan and show a complex relationship 30% of total treatment cost, and the disease was found between schistosomiasis and gender roles in relation to to be a huge burden for afflicted families and for the domestic activities and farming (100, 101). Female geni- health care system (107). tal schistosomiasis has recently been found to constitute an underestimated public health problem (102, 103). Low income (among other social determinants) is predictive of dengue fever in Belo Horizonte, Minas Women are more prone than men to have blinding tra- Gerais, Brazil (108). Analysis of secondary data for the choma. According to a literature review, this is due to same location found clusters of high rates of dengue more intensive exposure, because of their role as car- fever and leishmaniasis in underprivileged areas (12 ). egivers to younger children who are more likely to be The cost of dengue fever was estimated to be high in infected (26 ). In Mali no gender difference was found Thailand (109). With regard to human African trypano- in prevalence among preschool children whereas there somiasis, the disease “mainly affects economically active was a strong relationship between the trachoma status adults” and “hospitalization and treatment are expen- of women caregivers and their children (104). sive” (89 ). In a review of leishmaniasis and poverty (110), poverty is described as “the major underlying determi- To conclude, ethnicity is a social determinant for cer- nant” and “a potentiator of leishmaniasis morbidity and tain NTDs, mostly working via exposure (for example mortality”. Though government services for treatment dracunculiasis and onchocerciasis). Sociocultural factors of leishmaniasis are free in Nepal, lack of community are most conspicuous with regard to cutaneous leish- confidence in local health services led many patients to maniasis, leprosy, lymphatic filariasis and onchocerciasis, use private services, incurring high direct and indirect

Neglected tropical diseases: equity and social determinants 143 costs, with consequent depletion of savings, sale of may further lead to differential vulnerability and health assets and borrowing at high interest rates (111). A study care outcomes. Poverty will be addressed below in rela- from Bangladesh confirmed the harsh financial impact tion to recommended action 5. of kala-azar and described the families’ coping strate- gies (112). 8.4 Discussion: patterns, In north-eastern Brazil income inequality (as expressed pathways and entry-points by Theil’s L index) was significantly associated with the incidence of leprosy (113). As this index shows the rel- ative income differences in the municipalities studied, Based on the overview of the selected social determi- there is an interesting link to the more generic findings nants in relation to the 13 NTDs, this section will now of Wilkinson (114) and Marmot (115) that this param- aim to distil cross-cutting patterns and causal path- eter is of utmost importance for health. The study of ways leading to entry-points for recommended action. Kerr-Pontes et al. (113) is the only clear example from Table 8.1 summarizes the findings, showing the NTDs the literature review where relative poverty (as opposed in relation to the most conspicuous social determi- to absolute inability to pay) determines an NTD. nants at the various analytical levels of the Commission on Social Determinants of Health scoping paper (16 ). In Orissa, India, a costing study of lymphatic filariasis The table provides a simplified picture and is subject concluded that chronic patients lost 19% of total work- to debate. ing time per year (116). In Ghana, the disability and indirect economic loss (through inactivity) associated Water and sanitation, and housing and clustering, are with acute lymphatic filariasis manifestation of adenol- closely related to many of the NTDs, including Chagas ymphangitis seem to have been underestimated in the disease, cholera, dengue fever, dracunculiasis, leish- past (117). The serious negative impact of both acute maniasis, leprosy, lymphatic filariasis, schistosomiasis, and chronic lymphatic filariasis on productivity has also soil-transmitted helminths and trachoma. Not surpris- been documented in southern India (118). ingly, given that infectious diseases are being considered, the intermediary social determinants appear mainly at Raso et al. report from a study in Côte d’Ivoire that the level of exposure. These two social determinants are school-attending children from poorer households had therefore merged in one entry-point for intervention significantly higher prevalence and intensities of infec- (recommended action 1). tion with hookworms, and had worse access to formal health services (by travel distance) than schoolchildren Environment as a biosocial determinant is linked to from richer households (119). many of the NTDs, and Chagas disease, cholera, human African trypanosomiasis, leishmaniasis, onchocercia- For trachoma, Schémann et al. concluded that “there sis and schistosomiasis serve as examples. Buruli ulcer was a clear, continuous linear inverse relation between may be another case. Exposure is also the key level of wealth, development, and trachoma. Nevertheless, tra- analysis here due to the diseases’ transmission cycles. choma occurred at all levels of wealth and development Environment has been identified as an entry-point in and the data do not support the existence of a threshold recommended action 2. ‘poverty level’” (104). This is one of the rare examples found of a gradient in the relationship between the dis- Migration as a social determinant manifests itself at the ease (trachoma) prevalence and a social determinant levels of exposure, vulnerability and health care outcome (poverty). Another review confirms the conclusion that and is ultimately linked to the level of socioeconomic trachoma affects poor populations – though there is the context and position. The diseases cholera, dracuncu- interesting aspect that cattle ownership (of the wealthy) liasis, human African trypanosomiasis, leishmaniasis serves as a risk factor due to attraction of flies (6 ). and schistosomiasis have been selected to illustrate the issues, which lead to recommended action 3. Of all the social determinants explored in this chapter, poverty (inability to pay) is the only one having docu- In some cases sociocultural factors or gender determine mented association to all 13 NTDs. There are two main differential exposure to certain NTDs (dracuncu- mechanisms. Poverty as a structural social determi- liasis, human African trypanosomiasis, leishmaniasis, nant is closely linked to the intermediate determinants onchocerciasis, schistosomiasis and trachoma). Some of water and sanitation and housing and clustering. NTDs (cutaneous leishmaniasis, leprosy, chronic lym- In addition, poverty is a consequence of some of the phatic filariasis and chronic onchocerciasis) entail NTDs (for example Buruli ulcer, dengue fever, human negative social repercussions of stigma and social iso- African trypanosomiasis, leishmaniasis and lymphatic lation. Often differential health care outcomes are seen filariasis) – either due to very costly treatment (105, and the root causes can be found at the structural level. 106), or indirectly through loss of labour capability. This These issues are addressed in recommended action 4.

144 Equity, social determinants and public health programmes

Trachoma

helminths

Soil-transmitted Soil-transmitted

Schistosomiasis

Onchocerciasis

Lymphatic filariasis Lymphatic

Leprosy Leishmaniasis +++++ +

Disease

trypanosomiasis Human African African Human

n NTD and a social determinant at a given level. “?” indicates conflicting evidence. The table indicates conflicting evidence. “?” n NTD and a social determinant at given level.

Dracunculiasis Dengue fever Dengue

++++ + + ++++ + + Cholera

+++++ +

Chagas disease Chagas Buruli ulcer Buruli +++++++++++++ +++++++++++++ Consequences + Health care outcome Vulnerability + Health care outcomeConsequences + + Socioeconomic contextExposure + + + + +? + + + Health care outcome + + + + + Vulnerability + + + + + Exposure Relationship of the 13 NTDs to selected social determinants and five analytical levels “+” indicates instances where an overall either/or assessment of the literature reviewed demonstrates association between a “+” Poverty Socioeconomic context Sociocultural factors and gender Migration Socioeconomic context + + + + + Environment Exposure +? + + + + + + Housing and clustering Exposure + + + +? + Determinant and sanitationWater Exposure Level + + + + + + + provides a simplified picture and is subject to debate. TABLE 8.1 TABLE Note:

Neglected tropical diseases: equity and social determinants 145 Poverty emerges as the single most important social existence of appropriate drugs has led to a variety of determinant, exhibiting strong association for all NTDs. integrated interventions based on mass drug admin- Poverty is especially manifest at the levels of vulnera- istration – often also involving noncommunicable bility, health care outcomes and consequences and is diseases such as Vitamin A deficiency. The control of ultimately rooted at the level of socioeconomic con- other diseases (Chagas disease, dengue fever, dracuncu- text and position. It appears both as an ultimate cause liasis, human African trypanosomiasis and leishmaniasis) of NTDs via the intermediary determinants and as a depends to a large extent on vector control. consequence due to direct and indirect cost. Poverty as a cornerstone for inequity is addressed in recom- mended action 5. 8.5 Interventions

In some cases the social determinants define disadvan- Based on the analysis above of the selected social deter- taged population segments (nomads, ethnic groups, minants of importance to the NTDs and the levels women or the poor) that are not only carrying a dis- at which they interact, this section will suggest some proportionate burden of NTDs, but are at the same promising interventions based on the entry-points time not in a position to exert political influence in rel- identified above. Some general remarks should be made evant forums and attract resources. regarding the recommended actions.

As the 13 NTDs are all infectious (and to a large extent The interventions should be introduced in popula- vector-borne) diseases, exposure is the most prominent tions where there is a particularly heavy burden of one analytical level, either directly, for example with water or preferably several NTDs (as well as non-NTDs) or and sanitation, or indirectly, as with poverty. Vulnerabil- where patterns of key environmental and socioeco- ity may be seen in relation to the social determinants nomic indicators make it likely that they are a problem migration and poverty, where particular population (see recommended action 6 below). The choice of segments have greater susceptibility to some NTDs. intervention will depend on the local disease patterns Differential health care outcomes result in the cases of and environment as well as what is socioculturally fea- migration and poverty, due mainly to lack of availabil- sible in the context, and a flexible approach is needed. ity and affordability (respectively) of adequate health Success depends on appropriate intersectoral collabo- services. ration, for example between ministries of public works, agriculture, water and health or similar authorities at Most of the 13 NTDs are confined to certain geo- provincial or district levels. Intersectoral action for graphical areas, usually due to vegetational or climatic health is defined as “a recognized relationship between conditions determining the distribution of the vec- part or parts of the health sector with part or parts of tors (for example Chagas disease or leishmaniasis) or another sector which has been formed to take action the parasite (for example schistosomiasis). Others (for on an issue to achieve health outcomes (or interme- example cholera and leprosy) are mainly transferred diate health outcomes) in a way that is more effective, directly between humans and have a potentially more efficient or sustainable than could be achieved by the global distribution. health sector acting alone” (121). Genuine involve- ment of local communities is crucial not only in order From a biomedical perspective, the 13 NTDs fall into to make the interventions appropriate and sustaina- two broad categories: ble, but as an essential means to improved health and • Those for which there are already efficacious and community empowerment (115, 122, 123). The recom- inexpensive remedies (Chagas disease, cholera, mendations involve affirmative action in the sense that dracunculiasis, leprosy, lymphatic filariasis, onchocer- resources should be directed to specific areas, commu- ciasis, schistosomiasis, soil-transmitted helminths, nities and population segments, either as a reallocation trachoma) (31, 120); of existing funds or as a mobilization of additional • Those where remedies are not yet optimal (Buruli funds. This may cause political or practical problems, ulcer, dengue fever, human African trypanosomiasis, but is the most direct way to address inequities (14 ), and leishmaniasis, late lymphatic filariasis, late trachoma) the case is strengthened by new evidence provided in (89). this chapter that clusters of NTDs according to social determinants can be addressed cost-effectively by the With respect to the latter category, there may be avail- same intervention. able treatment using either surgery (Buruli ulcer) or drugs (human African trypanosomiasis and leishmani- asis), but they require hospitalization and the drugs are often costly or have significant side-effects. For some diseases (lymphatic filariasis, onchocerciasis, schisto- somiasis, soil-transmitted helminths, trachoma) the

146 Equity, social determinants and public health programmes Water, sanitation and household- Recommended action 1 constitutes a comprehensive related factors and integrated approach to address these social deter- minants in multiendemic areas. Lessons learned can be There are very direct links between a number of NTDs culled from the reviews of Esrey and Habicht (28 ) and and the intermediary social determinants of water and Esrey et al. (29 ), which provide important guidance sanitation, and housing and clustering (see Table 8.1). on priority-setting in relation to water and sanitation Though there is an overlap with only two (soil-trans- interventions. Ault (36 ) gives directions for environ- mitted helminths and trachoma) out of nine diseases mental management and Briceño-Leon (40 ) and with regard to these two social determinants, it still Bryan et al. (125) provide concrete examples of how makes sense to merge the two interventions. Partly, the housing may be improved. Issues of community par- social determinants are not clearly distinct (for exam- ticipation have been reviewed by Espino, Koops and ple, poor sanitation leads to contamination of the Manderson (126). peri-domestic area, as does livestock kept around the houses). Also, from an intervention perspective it would be more practical and cost-effective to enter a com- Environmental factors munity and address the two together. Some authors recommend a holistic community approach to these The environment can be seen as a biosocial determi- social determinants, as the risk factors are shared and nant for many of the NTDs (see Table 8.1) in that it hence need to be addressed at a community level provides a direct space in which infection can take rather than at the individual level (124). In her review place, predominantly through increased exposure. The of trachoma, Marx points to the importance of concep- environment is also linked to structural social determi- tualizing hygiene interventions at household and even nants, in particular poverty. community level (44 ).

RECOMMENDED ACTION 1. Addressing water, sanitation and household-related factors (the “preventive package”)

The “preventive package” should be introduced in populations where data have shown a particularly heavy burden of several relevant NTDs (as well as non-NTDs). It will address a combination of the NTDs for which efficacious and inexpensive treatment exists, as well as those for which the management depends on vector control or complicated and expensive treatment. The intervention will be a combination of preventive measures regarding water supply, sanitation, house improvement, cleaning of the peri-domestic area and clustering of people within confined areas. However, the intervention consists not only of provision of equipment and tangible structures; success also depends on relevant behavioural change (for example handwashing, covering of water containers and faecal disposal). The intervention programmes should therefore encompass well-planned, state-of-the-art programmes based on action-oriented learning. Improvement of housing and water and sanitation facilities is likely to be relatively costly. The intervention presupposes mobilization of political will and fund-raising, which will probably depend on a combination of public and private sources. Advocacy based on documentation of the burden of NTDs and the potential sustainable long-term benefits of the interventions could serve the point. Community participation and adaptation to local conditions is essential for this recommended action. Whatever interventions are implemented, mechanisms for maintenance should be an integrated part. This is crucial for the sustainability of the interventions. Successful implementation of the preventive package in a given community is likely to permanently reduce the NTDs in question as well as non-NTDs such as childhood diarrhoea.

Neglected tropical diseases: equity and social determinants 147 RECOMMENDED ACTION 2. Reducing environmental risk factors

Systematic health impact assessments should be implemented when water resource development schemes are planned. The substantial existing guidelines, tools and experiences should be utilized. In the many cases where schemes with negative health impacts have already been implemented, there is a need to analyse and mitigate the harmful conditions. It should be borne in mind that not only large water development schemes but even small local projects (for example minor irrigation schemes and impoundments constructed for fishing, water supply, flood control or livestock watering) may serve as important exposure points. Construction of large water resource development schemes of adequate standard presupposes the existence of political will. Intersectoral action for health, involving key ministries and other stakeholders (including local communities), is also instrumental, not least with regard to the smaller-scale impoundments and other schemes. Adequate risk assessment and surveillance systems are needed to forecast environmental changes of relevance to upsurges or outbreaks of NTDs (see recommended action 6).

The methodology for intersectoral health impact of in western Sahel (133), and modalities assessments in relation to water resource development have been explored for integration of human and vet- schemes is well established and encompasses biologi- erinary medical services for a nomadic population in cal, social and demographic aspects (127, 128). There are Chad (134). There is also significant knowledge of the many examples of the effect of large dams on health, operational aspects of health care provision for refugee including a number of NTDs (129, 130), though it is populations (22, 135, 136). methodologically difficult to evaluate the health impact of water resource development schemes (129) and the potential benefits to be derived from health impact Sociocultural factors and gender assessments. In some cases sociocultural factors or gender determine Entry-points for interventions related to the influ- differential exposure to certain NTDs (see Table 8.1), ence of environmental factors on vector-borne diseases and it varies from case to case whether men or women should be based on the principles of intersectoral are more negatively affected. It may be advantageous action for health and community participation (131). to address these conditions for clusters of NTDs and The report from the Consortium for Conservation other diseases to the extent that they occur in the same Medicine and the Millennium Ecosystem Assessment population. provides a broader picture of environmental themes (132). Sutherst’s review (61 ) on global change indicates Some control programmes have gained important potential entry-points for interventions in relation to expertise about how to reduce stigma, for example climate change, land use, land cover, biodiversity and the Danish Assistance to the National Leprosy Erad- water resource development schemes. ication Programme (DANLEP) in India (137). This programme addressed the local perceptions and neg- ative attitudes in a systematic way by staging meetings Migration in communities, schools and workplaces combining health education and leprosy . These experi- Migrant populations may be more exposed or vulnera- ences could be applied to multidisease settings with the ble to certain NTDs (see Table 8.1). Health services are aim of reducing suffering in endemic populations and usually insufficient, due to difficult logistics (nomads increasing coverage. or slum dwellers) or breakdown as a result of disasters and conflicts (refugees). Programmes should be tailored accordingly. Poverty as a root cause of NTDs

The review of Sheik-Mohamed and Velema (66 ) out- Poverty (in the sense of absolute low income, inabil- lines the main issues in relation to health care services ity to pay for basic services and marked vulnerability to for nomadic populations. Adapting health services to unforeseen health expenses) has been shown to be the the local context helped achieve increased coverage most all-encompassing root cause for NTDs. A human

148 Equity, social determinants and public health programmes RECOMMENDED ACTION 3. Improving health of migrating populations

Efforts should be made to ensure that migrant populations are given the right to be heard and exert political influence in relevant forums. Special health care programmes should be designed for labour migrants, nomadic populations and those subject to forced resettlement to provide health services for NTDs and other pertinent public health problems. The health care needs of refugees displaced by natural disasters or conflicts should be catered for with regard to NTDs and other relevant diseases. Curative and preventive interventions must be tailored to local conditions, including patterns of mobility, morbidity, and environmental and sociocultural factors. Adequate surveillance systems are needed to forecast and monitor population movements of relevance to upsurges or outbreaks of NTDs (see recommended action 6). When migration is combined with other social determinants (for example inadequate urban infrastructure or environmental risk factors for certain labour migrants) these additional conditions should be addressed concurrently.

RECOMMENDED ACTION 4. Reducing inequity due to sociocultural factors and gender

Efforts should be made to ensure that disadvantaged ethnic groups and indigenous populations, and those disadvantaged due to gender, are given the right to be heard and exert political influence in relevant forums. As stigma and gender-based inequity are deeply rooted in local sociocultural contexts, the interventions need to be adapted to those contexts. Where more than one NTD (and other diseases such as tuberculosis or epilepsy) have negative social impact, a concerted effort can be planned to ameliorate the consequences. The intervention will to a large extent consist of health education initiatives. It is important that health care providers are aware of and able to rectify issues arising from gender-based inequity in access to health care, which may be based on differences in acceptability or affordability of services. This will lead not only to increased coverage of services, but also to improved quality of life for NTD patients. In order to address gender-based inequity, there is a need to systematically provide gender- disaggregated data (see recommended action 6).

rights approach would view the adoption of measures An example from Japan and showing the cor- to reduce vulnerability to neglected diseases through relation between positive economic development and as part of the fundamental human decreasing leprosy incidence illustrates the importance right to health (138). Poverty serves as a fundamental of poverty-alleviating interventions (47 ), though the structural determinant and is at the same time a conse- relationship between disease and a number of socio- quence of some NTDs, due to the direct and indirect economic factors, including willingness and ability to costs incurred. Consequently, poverty alleviation and pay (139), is complex and largely beyond the scope of provision of affordable health care should be a central this chapter. There are a number of examples of how element in all efforts to address structural social deter- health sector reforms may inhibit access to treatment minants in relation to NTDs. (140–142).

Neglected tropical diseases: equity and social determinants 149 RECOMMENDED ACTION 5. Reducing poverty in NTD-endemic populations

Efforts should be made to ensure that disadvantaged (poor) population segments are given the right to be heard and exert political influence in relevant forums. Initiation of development projects in NTD-endemic areas should be considered as a means to strengthen income levels and access to subsistence resources. Depending on the local context, this should encompass a combination of large-scale schemes and community and household- based poverty alleviation interventions. In cases where treatment is disproportionately expensive (for example Buruli ulcer, dengue fever, human African trypanosomiasis and leishmaniasis), this should be addressed through targeted and subsidized health care interventions. Consideration should be given to ways of ameliorating the indirect cost of NTDs due to loss of productivity.

8.6 Implications: forewarning of impending increases in disease trans- measurement, evaluation and mission are provided by surveillance systems as an integral part of a public health infrastructure” (61 ). data requirements Geographic information system (GIS) and other tools for spatial analysis can be used in relation to landscape ecology and epidemiology (147, 148), for example in the Risk assessment and surveillance mapping of an urban visceral leishmaniasis epidemic in Brazil (53 ). Special issues relate to famine-driven The focality of NTDs has been described above. In migration (149). order to identify the populations where one or more NTDs pose an unacceptable burden, evidence is Some systems have been set up already, for example needed. Several of the articles reviewed point to the the WHO Global Outbreak Alert and Response Net- importance of adequate risk assessment and surveil- work, which recognizes the need for “early awareness lance, both generally and with regard to specific NTDs, of outbreaks and preparedness to respond” (150), and such as Chagas disease (37, 125, 143) and schistosomia- HealthMap, a global disease alert system introduced sis (78, 144). by WHO and the United Nations Children’s Fund (UNICEF) (151). Risk assessment and surveillance systems can enable appropriate interventions, for example for Chagas dis- Thus, there is overwhelming support for surveillance ease (37, 125), dengue fever (33 ) and leishmaniasis (42, and data gathering in relation to the NTDs and sig- 55). A surveillance system set up in a Cambodian ref- nificant progress has already been made. However, it ugee camp in Thailand led to early detection of an is one of the key conclusions of this chapter that there outbreak of dengue haemorrhagic fever, which allowed is a need for a more integrated approach within the prompt control through house spraying, larval control framework of a risk assessment and surveillance sys- and an extensive community education programme tem (recommended action 6). The evidence base (145). The work of de Mattos Almeida et al. (108) shows provided by the risk assessment and surveillance sys- how systematic use of secondary data on social deter- tem can contribute to addressing inequity in relation to minants such as education, poverty and household NTDs and will provide support for actions 1–5, recom- density can help predict dengue fever. mended above. A few studies have already shown the way towards an integrated approach (64, 152). Writing within a context of global climate change and emerging infectious diseases, Patz et al. recommend enhanced surveillance and response. “Attention needs Monitoring the impact to be directed towards establishing sentinel diagnos- tic centers in sensitive geographic regions bordering The risk assessment and surveillance system (recom- endemic zones” (146). In his review of global change mended action 6) will serve both to identify areas where and human vulnerability to vector-borne diseases, interventions (recommended actions 1–5) should be Sutherst says that “additional or alternative means of targeted and to provide a means of monitoring the

150 Equity, social determinants and public health programmes RECOMMENDED ACTION 6. Setting up risk assessment and surveillance systems

A risk assessment and surveillance system should be used to provide a continuously updated, gender- and age-disaggregated situation analysis of existing and imminent public health conditions in specific settings in order to identify populations at risk and forecast upcoming disease hot spots, thus providing not only early warnings for epidemics but also evidence for long-term planning under more stable conditions. Identification of such hot spots should not only be based on epidemiological data. Endemic populations should also be identified by combinations of environmental indicators (for example rainfall patterns, vegetation or altitude) and social indicators (for example life expectancy, female literacy rate, maternal mortality rate, rate or gross domestic product). A risk assessment and surveillance system should have the necessary cross-disciplinary expertise. In addition to biomedical specialists, experts from other fields should be involved, including biologists, climatologists, economists, demographers and anthropologists. A variety of cross-disciplinary tools is needed. The national health management information system, if of required quality, may provide much of the epidemiological data needed. Alternatively, sentinel sites may be set up or surveys conducted. The environmental aspects will depend on technologies such as GIS, global positioning system (GPS) and remote sensing (RS), whereas the social scientists will apply their own appropriate tools. Most endemic countries would benefit from having a risk assessment and surveillance system, targeted to the appropriate level, though in some cases (for example small Pacific Island States) they may opt for having supranational agencies. In large countries there may be a need for subunits at provincial or state level. It is crucial that the risk assessment and surveillance system, while providing aggregated data at higher levels, also illustrates local variations. Decisions need to be made regarding which public health conditions to include, depending on the local disease patterns. There is an urgent need to identify the most appropriate combinations of environmental and social determinants, preferably in an integrated research project. Care should be taken to draw on and supplement existing structures. Thus, the relevant partners and networks that are already involved in risk assessment and surveillance should be consulted. Furthermore, in many cases a risk assessment and surveillance system may be established largely by utilizing and merging existing data in an intersectoral approach. It should be recognized that staff overseeing the risk assessment and surveillance system will need time to harmonize and develop cross-disciplinary skills. Challenges faced will include mobilization of funding and putting in place skilled personnel and management able to engage in cross-disciplinary collaboration. Findings generated by a risk assessment and surveillance system need to be followed by appropriate action.

interventions, according to local circumstances. The be some time before impacts related to social determi- scope of NTDs that are targeted will determine which nants show up in evaluation studies (76 ). morbidity and mortality indicators are chosen. In some cases existing health management information sys- tems will provide the answers. In other cases ad hoc Knowledge gaps monitoring systems should be established or focused studies conducted. A few studies have already explored The literature review has shown that the available integrated approaches to risk profiling based on knowledge of the 13 NTDs varies significantly. Most combinations of indicators (64, 152). The impact of rec- outstanding is the lack of data on Buruli ulcer. Areas ommended actions 1–5 is not easily assessed, and it may that would benefit greatly from further review include

Neglected tropical diseases: equity and social determinants 151 the NTD-related social determinants that were not Most of the suggested actions entail a reallocation of included in this chapter (for example age, education, resources to marginalized NTD-multiendemic popu- occupation and urbanization); the social determinants lations. The preventive package (action 1), provision of of other neglected diseases (for example anthrax, bru- services to migrating populations (action 3), gender- cellosis, , Japanese encephalitis and yaws); based interventions (action 4) and poverty alleviation and links between the 13 NTDs described in this (action 5) are likely to meet resistance because they chapter and diseases dealt with in other chapters (for entail affirmative action and because the required example and tuberculosis). resources will need to be reallocated from groups that have hitherto been relatively more privileged (for The focality of the NTDs introduces another issue in example the wealthy, urban dwellers and men). The relation to knowledge gaps. Many examples have been difficulties associated with such reallocation as part of given of the importance of the local context (88, 100), budget negotiations at national or district levels may and greater attention needs to be given to location- be increased if funds donated by bilateral donors or specific variations than in the past (153). Thus, successful private partners are earmarked for specific diseases. In control of NTDs necessitates, in addition to a global such cases additional fund-raising may be needed. At overview, studies describing local variations in epide- the structural level, where it has been recommended miological, environmental and sociocultural factors. to ensure that the segments of the population that are disadvantaged (due to migration, ethnicity, gender Each of the six recommended actions above entails a or poverty) are given the right to be heard and exert number of research questions that should be addressed. political influence in relevant forums, a similar struggle The implementation of each of the suggested actions can be foreseen. However, equity can only be reached should be monitored by setting up appropriate cross- through a concerted effort even at this level. disciplinary studies. The risk assessment and surveillance system concept is innovative and lessons should be learned meticulously both with regard to the manage- 8.7 Conclusion rial and cross-disciplinary processes and with regard to the most appropriate combinations of epidemiological, The NTDs pose a particular burden to the most environmental and socioeconomic indicators. marginalized population segments and communi- ties, mostly in the developing countries. The inequity issues in the field of NTDs and social determinants are Managerial implications and extremely complex. Amongst the many social deter- challenges minants some were found to be particularly important for NTDs: water and sanitation, housing and clustering, While some of the recommendations above have cur- environment, migration, disasters and conflicts, soci- ative elements, the present analysis has mainly led to ocultural factors and gender, and finally poverty. The recommendations regarding prevention and health 13 NTDs are influenced by social determinants at all promotion. Seen in isolation hardly any of the find- the five analytical levels, though differential exposure ings are new – what is new is the emerging pattern stands out to be especially relevant. At the intervention of new clusters of NTDs that occur when an equity level accessibility and to a certain extent acceptability point of view is applied and the various social determi- are of relevance. The analysis leads to six recommended nants are used as analytical vantage points. Alternative actions, which focus more on preventive and promotive entry-points are thereby identified for interventions measures than on changes in curative service provision: that allow preventive measures to be applied to clusters 1. Addressing water, sanitation and household-related of NTDs. And as the diseases are not seen in isolation, factors cost-effectiveness balances may tilt. In order to uti- 2. Reducing environmental risk factors lize the full potential of this perspective, public health 3. Improving health of migrating populations experts and managers at national and international lev- 4. Reducing inequity due to sociocultural factors and els will need to look at the issues more flexibly and gender imaginatively than they have in the past. 5. Reducing poverty in NTD-endemic populations 6. Setting up risk assessment and surveillance systems Even from a practical managerial perspective the sug- gested actions are not easy to implement. They are all These recommended actions supplement the effica- complex (for example intersectoral or community cious, curative tools that are available for many of the based) and their success depends on long-term efforts. NTDs. Taking a social determinant perspective rear- Furthermore, the fact that they are largely preventive can ranges the NTDs according to new commonalities. In imply lower status. However, the long-term benefits in the same way as the availability of drugs cluster some terms of sustainability and levelling up justify the efforts. NTDs as being “tool ready”, a social determinant per- spective brings to the front other clusters of NTDs. By

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