Spring 2011

Page 1

Spring 2011

Volume 1, Issue 1

www.ghjournal.org

Editor-in-Chief

Ryan M. Gallagher

Head of Publicity

Kevin Xu

Online Editor

Debattama Sen

Head Layout Editor

Jamie Shen

Head Design Editor

Nina Paddu

Senior Editors

Jenny Shao, Amirah Sequiera, Nuriel Moghavem, Celine Pascheles,

Junior Editors

Karina Yu, Lillian Jin, Dina Abiri, Moyo Ajayi,

Associate Editors

=DĂ€UDK %DNVK $O\VRQ &XQningham, Merry Ding, Nicole Dussault , Melanie Gao, Samima Habbsa, Starlyte Harris, Lauren Hsu, Lexa Koenig, Shruti Kulkarni, Amanda Su, Crystal Wang

Advisory Board

Christine Marie George, Columbia University Anca Giurgiulescu, Columbia University Sabrina Hermosilla, Columbia University Jonas Lang, Columbia University

From the Editorial Board Based at Columbia University in the City of New York, The Journal of Global Health is a new international student publication released biannually. The mission of this publication is to facilitate dialogue among students at the medical, graduate, and undergraduate level on innovative solutions to interdisciplinary global health issues from a variety of academic, cultural, and geographic perspectives. The health of human populations depends on the collective efforts of professionals from a vast DUUD\ RI ÀHOGV LQFOXGLQJ VFLHQWLVWV SXEOLF SROLF\ PDNers, and medical practitioners. The most pressing global health issues require increasingly interdisciplinary approaches to solving them. Despite substantial recent growth of interest in global health policy and research, there is currently a lack of dialogue among students on global health issues in an organized, academic fashion. In this inaugural issue of The Journal of Global Health, we represent a wide range of perspectives from students throughout the world immersed in a variety of different academic disciplines relating to global health. Instructions for authors interested in submitting for our Fall 2011 issue can be found online at www.ghjournal.org.

Kunal Sood, University of California, San Francisco Contact Information and Media Inquiries

3430 Lerner Hall, Columbia University, 2920 Broadway, New York, NY 10027, USA Manuscripts should be submitted online via our online manuscript submission system at www.ghjournal.org. All inquiries regarding submissions for the Fall 2011 JGH issue should be addressed to: submissions@ghjournal.org. All inquiries regarding advertisements, subscriptions and permissions to republish or adapt material should be addressed to Ryan M. Gallagher, Editor-in-Chief, e-mail: ryan.gallagher@ghjournal.org.

Cover Art Credit: Debattama Sen

Credit: Emily Gallagher JGH is a member of the Columbia University InterPublication Alliance. All artiFOHV SXEOLVKHG LQFOXGLQJ UHVHDUFK DUWLFOHV ÀHOG QRWHV DQG SHUVSHFWLYHV UHSUHVHQW WKH RSLQLRQV RI WKH DXWKRUV DQG GR QRW UHà HFW WKH RIÀFLDO SROLF\ RI -*+ RU WKH LQVWLWXWLRQ V ZLWK ZKLFK WKH DXWKRU LV DIÀOLDWHG XQOHVV WKLV LV FOHDUO\ LQGLFDWHG

i

Table of Contents

19

Immunization Activities in 3RVW &RQĂ LFW 6HWWLQJV )LHOG 1RWHV from Southern Sudan Thuwein Yusuf Makamba Tulane University School of Public Health and Tropical Medicine, New Orleans, LA, USA

Research Articles

Perspectives

1

22

Ebola, Emerging: The Limitations of Culturalist Discourses in Epidemiology Jared Jones

A Snapshot of HIV in Pakistan: On the brink of an epidemic Eitezaz Mahmood

Yale University, New Haven, CT, USA

6

Northwestern University, Evanston, IL, USA

Political Systems and Health Inequity: Connecting Apartheid Policies to the HIV/AIDS Epidemic in South Africa Victoria Scrubb

24

University of Toronto, Toronto, ON, Canada

9

7KH ,QĂ XHQFH RI /LSRG\VWURSK\ DQG Traditional Medicine on ART Adherence in Tanzania

Ethical Dilemmas in Global Clinical Electives Mei Elansary1, Lauren K Graber1, Audrey M Provenzano2, Michele Barry3, Kaveh Khoshnood4, Asghar Rastegar1 Yale School of Medicine, New Haven, CT, USA, 2 Brigham and Women’s Hospital, Boston, MA, USA, 3 2IÀFH RI WKH 'HDQ *OREDO +HDOWK 6WDQIRUG 8QLYHUVLW\ Stanford, CA, USA, 4 Yale School of Public Health, New Haven, CT, USA 1

Sajida J Kimambo1, Lillian N Mtei1, Robin J Larson2, Johnson J Lyimo1, Muhammad Bakari1, Susan Tvaroha3, Lisa V Adams3, Kisali Pallangyo1, C. Fordham von Reyn3

27

Muhimbili University of Health and Allied Sciences, Dar es Salaam, Tanzania, 2VA Outcomes Group, White River Junction, VT, USA, 3Infectious Disease and International Health, Dartmouth Medical School, NH, USA. 1

Fighting Stigma: Lymphatic Filariasis Zaina Naeem University of Pennsylvania, Philadelphia, PA, USA

)LHOG 1RWHV

31

Dandy-Walker Complex by 14 Diagnosing Computed Tomography: Experience in

What is Global Health? Oliver-James Dyar1, 2 and Ayesha de Costa1 Division of Global Health, Nobels Väg 9, Karolinska Institutet, 171 77 Stockholm, Sweden. 2 University of Oxford, Oxford, U.K. 1

Uganda and Recommendations for Hospitals in Resource-limited Settings Michael C Dewan1, Benjamin C Warf2, John Mugamba3

Spotlight on Fukushima: the Aftermath

Yale School of Medicine, New Haven, CT, USA, 2 Department of Neurosurgery, Harvard Medical School, Boston, MA, USA, 3 CURE Children’s 1

Hospital of Uganda, Mbale, Uganda

33

of the Heart: A Student’s 16 Language Perspective on Congenital Heart

,QWHUYLHZ ZLWK 1RUPDQ - .OHLPDQ 3K ' 0DLOPDQ 6FKRRO RI 3XEOLF Health, Columbia University The director of Columbia University’s Eye Radiation and Environmental Research Laboratory discusses the public health consequences of the Fukushima nuclear plant’s radiation leak.

Defects and Volunteering Alina Yang Princeton University, Princeton, NJ, USA

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Research Articles

Ebola, Emerging: The Limitations of Culturalist Discourses in Epidemiology Jared Jones Yale University, New Haven, CT, USA Abstract In this paper, I offer a critique of the culturalist epidemiology that dominates the discourse of Ebola in both popular and international health spheres. Ebola has been exoticized, associated with “traditionalâ€? practices, local customs, and cultural “beliefsâ€? and insinuated to be the result of African igQRUDQFH DQG EDFNZDUGQHVV ,QGHHG UHLĂ€HG FXOWXUH LV UHFRQĂ€JXUHG LQWR D ´ULVN IDFWRU Âľ $FFRXQWV RI WKH GLVHDVH SDLQW $IULFDQ FXOWXUH DV DQ REVWDFOH to prevention and epidemic control efforts, at times even linking the eruption of the disease to practices such as burial traditions or consumption of bushmeat. But this emphasis is misleading;Íž the assumption of African “otherness,â€? rather than evidence, epidemiological or otherwise, underpins dominant culturalist logics that “beliefsâ€? motivate behaviors which increase the likelihood of Ebola’s emergence and spread. Conspicuously abVHQW IURP ERWK SRSXODU DQG RIĂ€FLDO UKHWRULF KDV EHHQ DWWHQWLRQ WR ODUJHU VWUXFWXUDO GHWHUPLQDQWV RI WKH FRXUVH RI (EROD HSLGHPLFV <HW JOREDO IRUFHV condition the emergence of Ebola far more than culture does. Inequality and inadequate provision of healthcare, entrenched and exacerbated by a legacy of colonialism, superpower geopolitics, and developmental neoliberalism, are responsible for much of Ebola’s spread. Certainly, structural force alone cannot account for the destruction Ebola has wreaked on the lives of victims and their families. Culture does matter. But the focus on culture comes at the expense of attention to sociopolitical and economic structures, obscuring the reality that global forces affect epidemics in Africa. In this paper, I seek to map the discursive contours of Ebola’s emergence, contextualize these trends within a larger debate about the role of anthropology in epidemiology, and question the simplistic link between culture and Ebola through a critical examination of structural-level forces.

Emergence (EROD LV D KHPRUUKDJLF IHYHU RI WKH Ă€ORYLUXV IDPLO\ ZLWK D 90% case fatality rate. There is no effective treatment for ebola except for the euphemistically labeled “supportive therapyâ€? (CDC, 2009). The virus is spread through contact with infected Ă XLGV W\SLFDOO\ EORRG DQG RQFH LW KDV LQIHFWHG D QHZ SDWLHQW LW rapidly attacks the internal organs and connective tissue, causes severe bleeding, vomiting, aches, mental impairment and dementia, and in severe cases, grand mal seizures. The typical cause of death is multi-organ system failure (Lashley & Durham, 2007). 7KH LQWHUQDWLRQDO FRPPXQLW\ Ă€UVW EHFDPH DZDUH RI (EROD LQ 1976, when the disease erupted in Yambuku, Zaire (now the Democratic Republic of the Congo, or DROC) and N’zara, Sudan (WHO, 2007). During these outbreaks, most of the world took only passing notice of this new disease. Scientists who had dealt with the disease and the Zairois and Sudanese touched by it would not soon forget the epidemic, but media focus was limited and Western concern was low. It was not until the late 1980s that Ebola would “emerge.â€? In 1989, Ebola was detected in a shipment of crab-eating macaque monkeys to a laboratory in Reston, Virginia, and media frenzy ensued (Associated Press, 1989). Here was an exotic and deadly disease with no cure, let ORRVH IRU WKH Ă€UVW WLPH RQ $PHULFDQ VRLO 8OWLPDWHO\ WKH SDUWLFXlar subtype that had proven fatal to the monkeys was discovered to be harmless in humans (CDC, 2009), but fear of the virus had been sparked by the event and only grew with time. Within a few short years, Richard Preston published The Hot Zone, a bestselling book about Ebola and the Reston event, and Outbreak, D Ă€OP VWDUULQJ 'XVWLQ +RIIPDQ DQG 0RUJDQ )UHHPDQ SRU

trayed the potential scenario that an infected monkey shipped from Africa could cause a major epidemic within the U.S. Despite media attention, the fear surrounding Ebola is in many ways overstated. The virus is indeed incredibly lethal—if you are infected. But in the course of over 30 years since its LQLWLDO DSSHDUDQFH RQO\ SHRSOH KDYH GLHG LQ WRWDO &'& 2009). For comparison, twice as many children die of malaria each day (WHO, 2003). Yet Ebola looms far larger in the Western imagination. Why? Because the virus represents a threat to Western populations. It could travel from there and infect us here. It could mutate and spark a pandemic. It could be stolen by terrorist groups or weaponized by hostile forces. It has the potential to infect us in a way that malaria, conquered as an epidemic disease in the West and easily treated in resource-endowed hosSLWDOV GRHV QRW $ VLJQLĂ€FDQW ERG\ RI OLWHUDWXUH H[DPLQHV WKH discourse of “emerging and re-emergingâ€? infectious disease. As anthropologist and physician Paul Farmer has argued, such categorizations are often limiting because they imply a change in the biological organism or pathogenicity, when, in fact, diseases emerge and re-emerge because of social forces (Farmer, 1999). Moreover, the terms mask where and for whom the diseases have emerged. Tuberculosis, for instance, never “disappeared,â€? as its label of “re-emergingâ€? might indicate. But those who it continued to infect and kill in shocking numbers were people from the poorest countries. Consider that for OECD countries, tuberculosis has disappeared. It “re-emergedâ€? only when it once again posed a threat to Western populations in the form of Multi-Drug Resistant TB, which was potentially untreatable. 1

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Research Articles

Ebola is an example of such a disease, one that emerged into Western consciousness more than it did into the biological landscape. Media coverage of the epidemic in 1976 was virtually non-existent;Íž a search through the New York Times archives indicates that only one article was written about the disease prior to 1989. But after the 1989 macaque monkey incident, media interest exploded. As Paul Farmer writes:

2007). Such arguments convey that Africans are both ignorant and stubborn in their misconceptions while supporting the notion that Ebola outbreaks are caused by a cultural tradition of bushmeat consumption. As I will show later, similar theories of causation link burial practices to outbreaks. More generally, African culture is seen as an obstacle to overcome when implementing outbreak control. Locals are presumed to subscribe to alternative disease models rooted in “traditional healing,� believe in sorcery or the supernatural as the cause of the disease, or generally hold “misconceptions� about its etiology. Laurie Garrett’s description of the response to the Kikwit epidemic is telling:

Modern communications, including print and broadcast media, have been crucial in the construction of Ebola—a minor player, statistically speaking, in Zaire’s long list of fatal infections—as an emerging infectious disease‌ journalists DQG QRYHOLVWV ZURWH EHVW VHOOLQJ ERRNV DERXW VPDOO EXW KRUULÀF SODJXHV ZKLFK LQ WXUQ EHFDPH SURÀWDEOH FLQHPD 7KXV V\PEROLFDOO\ DQG SURYHUELDOO\ (EROD VSUHDG OLNH ZLOGÀUH³DV D danger potentially without limit. It emerged. (Farmer, 1999).

[It was] something called a virus. Something called Ebola. These things gripped the estimated 400,000 people of Kikwit with a terror unlike any they had ever felt‌ The victims died fast, screamed incoherent phrases of apparent devilish origin. They seemed possessed‌ There were ancient ceremonies handed down by the ancestors that could purge evil spirits—they usually lifted the landa-landa [a local name]. But not this time. The magic was too powerful. Surely it must be the work of an exceptionally evil one, who was the potent fount of Satanism (Garrett, 2000).

Toward a Culturalist Epidemiology Ebola did not merely emerge;Íž it emerged from Africa. Since its discovery, the mystery and intrigue surrounding Ebola has been linked to its foreign origins. The virus was exocitized, and the imagery invoked in many minds was that of an ancient evil surfacing from its hidden resting place in the darkness of the $IULFDQ MXQJOH &11 SURGXFHG D VSHFLDO LQ ZLWK HVVHQWLDOO\ this message, describing “a killer on the loose in the rainforHVWÂľ &11 $Q DUWLFOH HQWLWOHG ´7KH 1H[W 3ODJXH DQG the Nextâ€? argues that “[in] the remotest tropics of Africa and South America lurk a coterie of viruses‌ [such as] Ebolaâ€? (Wade, 1994). A New York Times piece describes how “the rare and terrifying Ebola virus has emerged from its hiding place in WKH KHDUW RI WKH $IULFDQ MXQJOHÂľ (GLWRULDO 7KH REVHVsion with Ebola’s “hidden reservoirâ€? in Africa runs through nearly every Western account of the disease in the media. This connection between African culture and Ebola is more than mere rhetorical racialization of the disease. Culture itself is reconstituted as a “risk factorâ€? for infection in light of assumptions about African “Otherness.â€? In both SRSXODU DQG RIĂ€FLDO L H :+2 &'& DFFRXQWV $IULFDQ ´EHliefsâ€?—often about disease etiology and transmission—are represented as ignorant and backwards, supposedly hindering or counteracting more enlightened epidemic control efforts. Africans are presumed to believe in spirits and witchcraft as the cause of Ebola, and reject biomedicine and the interventions it necessitates. These “beliefsâ€? are sometimes even held to motivate cultural behaviors or “customsâ€? that are responsible for initial outbreak of the disease and facilitate its spread. The Bushmeat Hypothesis, which posits that hunting, slaughtering, and eating infected gorilla or monkey meat is the primary cause of the virus’s entrance to a new population, is among the dominant explanations for Ebola outbreaks, and typically these accounts attribute bushmeat consumption to African culture (Fox, 2004). Rural Africans sometimes eat these animals;Íž this fact is UHFRQĂ€JXUHG LQWR QHDU FHUWDLQ SURRI RI D FDXVDO PHFKDQLVP $FDGHPLF VWXGLHV GHSOR\ D WHFKQR VFLHQWLĂ€F GLVFRXUVH WR PDVN this simple cultural logic in advancing the hypothesis. “Despite efforts to change the eating habits of African villagers,â€? con tends one article, “many believe occult forces are behind Ebola. They do not understand that they could limit their exposure by avoiding dead or sick animalsâ€? (Rizkalla, Blanco-Silva, & Gruver, JGH t Volume 1 t Issue 1 t Spring 2011

These statements seem to suggest that Africans hold eccentric and primitive “beliefsâ€? and may not accept the “truthâ€? of modern biomedicine. Byron Good’s Medicine, Rationality, and Experience offers cogent analysis of the epistemology of medicine, which views itself not as a cultural construction, but a logical progression of objective knowledge into techniques designed to correct concrete biophysical abnormalities. Biomedicine, as a form of science, thus holds a privileged position in Western societies, as the arbiter of the divide beWZHHQ ´NQRZOHGJHÂľ DQG ´EHOLHI Âľ WKH Ă€UVW GHQRWLQJ XQLYHUsal truth and the latter a mere presupposition with a connotation of error (Good, 1994). In short, they believe, we know. The answer to the supposed barrier of culture, according to Western physicians and WHO teams, must be community education campaigns and anthropologically minded initiatives.

The Unhappy Marriage of Epidemiology and Anthropology Susan DiGiacomo has argued that anthropology and epidemiology should be natural allies in the study of disease. %XW ZKHQ DQWKURSRORJ\ LV RSHUDWLRQDOL]HG LQ ELRVFLHQWLĂ€F VHWWLQJV ´FXOWXUH LV UHLĂ€HG DV DQ HQVHPEOH RI PHDVXUDEOH ÂśIDFWRUV¡ ZLWK GHWHUPLQLVWLF SRZHU RYHU VSHFLĂ€F DVSHFWV RI LOOQHVVÂľ 'LGiacomo, 1999). Thus, anthropology has not truly been integrated into epidemiology. Rather, anthropology is “raided for ELWV RI LQIRUPDWLRQ DERXW ÂśFXOWXUH¡ ZKLFK FDQ WKHQ EH SOXJJHG into a statistical model that generates correlations amenable to being represented as causalâ€? (DiGiacomo, 1999). Randall Packard and Paul Epstein have advanced similar claims with respect to the experience of medical research on HIV/ AIDS in Africa. They argue that scientists were inevitably inĂ XHQFHG E\ DVVXPSWLRQV RI K\SHUVH[XDOLW\ RI $IULFDQ SHRples and other peculiarities of culture, and constructed causal theories to match these assumptions. Anthropology quickly became viewed merely as a way to overcome culture barriers: ´7KH PHGLFDO UHVHDUFK FRPPXQLW\ GHĂ€QHG WKH SDUDPHWHUV RI 2

Research Articles on culture at the expense of structure, however, is obfuscating. Take, for instance, the imagery of the village, which is almost universally deployed. Sub-Saharan Africa actually has one of the highest rates of urbanization (which is typically linked to industrialization) in the world. In fact, DROC and Gabon, the two countries with the greatest numbers of Ebola outbreaks, are the two most urbanized countries in Africa at 67% and 84%, respectively (Falola & Afolabi, 2007). Many depictions of Ebola victims invoke the idea of African “traditionalistsâ€? but a large number of those affected by Ebola live in cities, accept the biomedical model of disease, and are amenable to epidemic control efforts. In Ebola, Culture, and Politics: The Anthropology of an Emerging Infectious Disease, Hewlett describes “village life,â€? detailing family organization, social structure, and cataloguing local explanatory models of sorcery or supernatural causation (Hewlett & Bonnie, 2008). Yet the same source also notes that 60% of the cases were in urban, not rural areas (Hewlett & Bonnie, 2008). The Gulu district, where the epidemic occurred, was not some backwards and timeless village;Íž it had three large hospitals, paved roads, nightclubs, restauUDQWV HOHFWULFLW\ DQG QXPHURXV JRYHUQPHQW RIĂ€FHV 7KLV ZDV a modern city, though a poor one. The inhabitants generally accepted biomedical model and visited hospitals during illness. The spread of the Ebola beyond the index case is, as I have argued, discursively linked to cultural modes of transmisVLRQ %XW WKH JUHDWHVW DPSOLĂ€HU DSSHDUV WR KDYH EHHQ KRVSLWDOV Healthcare workers constitute one of the hardest hit groups. Other patients are also infected, some returning to their homes without knowing they are infected. They may then transmit the virus to the rest of their family or others in their community (Preston, 1994). In the Belgian missionary hospital LQ <DPEXNX ZKHUH WKH Ă€UVW FDVH RI (EROD DOWKRXJK LW ZDV QRW FDOOHG WKDW DW WKH WLPH ZDV UHSRUWHG WKH QXUVHV ODLG RXW needles every morning, which they would use to give shots to EHWZHHQ SDWLHQWV HDFK GD\ *DUUHWW D VLJQLĂ€FDQW transmission risk for blood-borne virus. Nosocomial transmission was shockingly high in Yambuku, as it was in the N’zara outbreak, where Ebola spread rapidly through the staff and patients at the Maridi hospital (Garrett, 1994). Inadequate supplies and unsterile syringes have also been cited in the Uganda HSLGHPLF RI DQG WKH .LNZLW HSLGHPLF LQ +HZOHWW & Bonnie, 2008). One report declares that “in-adequate [sic] and poor quality of protective materials, especially at the beginning of the outbreak, was a big problem and contributed to the transmission of Ebola virus within the health care settingâ€? (Lamunu et al., 2006). The CDC Ebola Factsheet lists nosocomial transmission as one of the most serious causes of the spread of the disease (CDC, 2009). Yet despite the clear role of poor healthcare infrastructure, the focus in the literature has been on education and community mobilization campaigns, consigning inadequately funded hospitals to a status as an unalterable African condition in which epidemics play out. Poverty, inequality, and poor healthcare infrastructure remain outside the realm of conceivable intervention. The shift in emphasis from resources to culture masks the fact that improving the quality of health care and reducing inequalLW\ FRXOG VLJQLĂ€FDQWO\ UHGXFH WKH VSUHDG RI (EROD HSLGHPLFV

the social science input in line with the dominant behavioral PRGHO 6SHFLĂ€FDOO\ WKH\ DVNHG DQWKURSRORJLVWV DQG RWKHU VRFLDO VFLHQWLVWV WR SURYLGH LQIRUPDWLRQ DERXW ÂśULVN EHKDYLRUV¡ that might facilitate transmissionâ€? (Packard & Epstein, 1991). In short, anthropology has been employed as the handmaiden of epidemiology. Its role has been circumscribed to identifying “beliefsâ€? in order to help design education campaigns and implement “culturally appropriate intervention strategies.â€? Medical researchers ask anthropologists to deal with the “cultural issues.â€? In this light, the discipline has become little more than a specialist in local beliefs and customs. Anthropologists are presumed to have knowledge of culture which they can package into discrete units for international health experts in order to make outbreak control more effective. Many anthropologists seem even to embrace this role. A recent book by anthropologists Barry and Bonnie Hewlett, Ebola, Culture, and Politics: The Anthropology of an Emerging Infectious Disease, effectively serves this purpose. After cataloging local disease models, customs, and beliefs, the book’s conclusion ZDV WKDW ´DQWKURSRORJLVWV FDQ KHOS VROYH VSHFLĂ€F FOLQLFDO ODERratory, epidemiological, and other problems that emerge during an outbreak, such as why people run away from the ambulance, why they refuse to seek treatment at the clinic, and‌ suggest ways to modify clinical and mortuary practices so they are culturally sensitive and appropriateâ€? (Hewlett & Bonnie, 2008). Certainly, there is a need for cultural awareness in any public health campaign or outbreak control. But anthropology discards its position as a contextualizing discipline by circumscribing its role to “explainingâ€? the enigmatic beliefs of locals for use in a behavioralist epistemology. It implicitly reinforces the assumption that behaviors are culturally determined, ignoring social, political, economic, and historical factors that affect health outcomes and disease distribution. Epidemiology has almost always limited itself to an analysis of individual behaviors as “risk factors.â€? Indeed, these individualizing claims of causality may be useful for public health interventions because they allow for rapid targeting of risky behaviors or populations. EducaWLRQ FDPSDLJQV ZKLFK LQ PDQ\ FDVHV DUH KLJKO\ HIĂ€FDFLRXV H J Uganda’s “Zero Grazingâ€? campaign, which has substantially reduced HIV/AIDS transmission rates), are easier to implement than wide-sweeping improvements to public health infrastructure. But anthropology cannot allow itself to be limited to serving as a handyman for “cultural problemsâ€? in outbreak control. It must reclaim broader role as a contextualizing discipline and OD\ EDUH WKH VWUXFWXUDO IRUFHV WKDW LQĂ XHQFH GLVHDVH SDWWHUQV

What’s culture got to do with it? $V , KDYH DUJXHG WKURXJKRXW WKLV SDSHU PDQ\ RIĂ€FLDO reports and news stories suggest that culture may be a causal agent of Ebola. Particularly striking is the lack of attention to structural forces, global, national, or local, which have conditioned the emergence and spread of Ebola. African political, social, and economic context is taken as a given, set aside in a “black box,â€? and untouched by outbreak control efforts. African “Othernessâ€? overpowers the possibility of a non-cultural causality in the dominant discourse, and other factors are left unexamined as potentially causal or exacerbating. The focus

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clientelism. As historian Fred Hayward notes, the European powers left behind an economy based on commodity exports and state-controlled agricultural monopolies, which was highly susceptible to abuse (Hayward, 1986). Further, Africanist Mahmood Mamdani has cogently argued that the colonial state had an entrenched system of decentralized despotism in which the central government turned a blind eye toward chiefs demanding WULEXWH DV ORQJ DV WKH\ SURGXFHG SURĂ€W 0DPGDQL &RUruption is not cultural, nor determined solely by the actions of individual African leaders. It is part of colonialism’s long shadow. Shortly after DROC’s independence from the Europeans, the CIA assisted in the assassination of Patrice Lumumba, a suspected left-wing potential ally of the Soviets, and helped 0REXWX 6HVH 6HNR VHFXUH WKH SUHVLGHQF\ RI =DLUH LQ Mobutu was a notoriously corrupt leader who amassed immense SHUVRQDO ZHDOWKÂł ELOOLRQÂłE\ UDLGLQJ SXEOLF FRIIHUV DV WKH entire country had been in debt (Garrett, 2000). Mobutu’s rule was marked by blatant disregard for the health and well-being of his populace, inattention to improving infrastructure. The doling out of political favors and positions were required to stay in SRZHU 'HFDGHV RI SRWHQWLDO JURZWK ZHUH VWLĂ HG KRVSLWDOV ODQguished, and healthcare providers, especially those in the poorest areas, were left unpaid. Journalist Laurie Garrett rightly argues that Ebola’s emergence in Zaire was the result of “greed, corruption, arrogance, tyranny, and callousness‌ [it was] was the inevitable outcome of disgraceful disconcern—even disdain—for the health of the Zairois publicâ€? (Garrett, 2000). But she, like many others, doesn’t link these factors to a likely cause: U.S.-Soviet geopolitics, and the three decades of support and nearly unfettered U.S. military aid which allowed Mobutu to stay in power. Structural Adjustment Policies (SAPs) and other forms of conditionality by the IMF or World Bank have also contributed to the poor quality of healthcare infrastructure in Africa. There LV D YDVW OLWHUDWXUH EDVH WKDW GHWDLOV KRZ Ă€VFDO OLEHUDOL]DWLRQ FRPponents required cutbacks in public expenditure;Íž healthcare was considered one of the most expendable programs. Healthcare spending dropped precipitously;Íž needed hospitals were not built, necessary supplies were not provided, salaries went unpaid, hospitals were left understaffed, and many of the best and brightest doctors left the African countries because of the despicable hospitals and lack of opportunity (Schoepf, Schoepf, & Millen, 2002). The accompanying trade liberalization also diminished, indirectly, healthcare funding, because revenues from tariffs were a sizable portion of government budgets, and as this source dried up, spending had to be further cut. Moreover, by encouraging “outward orientation,â€? SAPs sought to increase production in the most SURĂ€WDEOH H[SRUW VHFWRUV DJULFXOWXUH DQG PLQHUDOV :KLOH ZHOO intentioned, this served to entrench Africa’s position as a global commodity exporter. Global commodity prices are incredibly YRODWLOH VRPHWLPHV Ă XFWXDWLQJ PRUH WKDQ LQ D JLYHQ \HDU and are vulnerable to U.S. and EU agricultural subsidies, causing D Ă RRGLQJ RI WKH PDUNHW DQG ORZHULQJ RI WKH SULFH 5HO\LQJ RQ commodities and the whims of global prices was arguably a poor development strategy for DROC, making budgetary planning extremely challenging and diminishing its capacity to undertake long-term infrastructure projects (Mkandawire & Soludo, 1999). To be clear, I do not wish to overstate the claim that global forces are responsible for the incidence and spread of Ebola

,Q WKH .LNZLW HSLGHPLF KRVSLWDO IDFLOLWLHV KDG QR running water, no electricity and no working waste-disposal system;Íž there was a lack of disposable medical materials and protective equipment;Íž nursing often involved invasive procedures and was usually conducted without protective gear (Hewlett & Bonnie, 2008). Further, the hospital was understaffed, overworked, and its workers had incredibly low morale—the overwhelming majority of Zaire’s physicians and nurses had gone unpaid since 1991 because of salary arrears (Hewlett & Bonnie, 2008). By the time MĂŠdecins Sans Frontières (MSF) had arrived in the country, 73% of the dead were healthcare workers, and almost all of the infected had been treated in the hospital and may have acquired infection there (Garrett, 2000). What stopped this mode of transmission? Mere supplies and additional manpower is one possibility. MSF helped institute a normalized routine and provided barrier nursing supplies and clean needles. “Exhausted, frightened healthcare workers make mistakesâ€? writes Garrett. “Needles slip, bottles break, hands tremble, all creating opportunities to spread the virus.â€? Yet with appropriate supplies and additional nurses, “the hospital spread of Ebola came to an immediate and grinding haltâ€? (Garrett, 2000). Transmission continued to occur in the community, albeit at a vastly lower rate, particularly in homes where family members cared for the ill. Since nearly every case of the disease was linked to the hospital, people had grown suspicious of the KRVSLWDO¡V HIĂ€FDF\ DQG PDQ\ FKRVH WR WUHDW SDWLHQWV DW KRPH So why are African hospitals so poor? This question is left largely unexamined in health policy reports. “It’s Africaâ€? is the implication. “Of course it’s poor.â€? Poverty, inequality, and crumbling infrastructure are left untouched as a black box;Íž rarely do health reports or newspaper articles suggest their causes or remedies. They are considered an unalterable and fundamentally African condition. Culture, conversely, another contextual facWRU LV FRQVLGHUHG HDVLO\ ´Ă€[DEOHÂľ WKURXJK HGXFDWLRQ FDPSDLJQV or community mobilization efforts. Yet while the assumption of cultural causation of ebola is dubious at best, it is clear that inequality, lack of adequate supplies, and short-staffed hospitals do spread Ebola. These conditions, however, do not merely exist. They are determined by larger structural, and often global, forces. The persistence of African poverty is a topic too large to examine in the present investigation. But here I will suggest some of the ways in which larger global forces have caused or perpetuated inequality across the continent, and limited the resources available for healthcare provision. Numerous authors point to endemic corruption and the patrimonial tendencies of predatory and autocratic regimes as the cause of poor economic performance and low provision of public goods, including health care. Many development consultants contend that corruption is part of the “cultureâ€? in Africa (see Dambisa Moyo’s best-selling Dead Aid, for instance), yet it is possible to trace the phenomenon to a legacy of colonialism. Since colonial administrations never included Africans themselves, newly independent states had a GHDUWK RI TXDOLĂ€HG EXUHDXFUDWV DQG VLJQLĂ€FDQW FRPSHWLWLRQ IRU control of government. When the Belgians left the Congo in 1960, there were merely six indigenous college graduates in the country (Moss, 2007). Ruling the Congo required dispensing favors and positions in order to effectively gain political traction, which fostered a political environment of corruption and JGH t Volume 1 t Issue 1 t Spring 2011

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Research Articles outbreaks. Ebola could have emerged even if Africa were more developed, and there are customs in Africa that may aggravate the spread of disease (for instance “love touches,â€? or ritual contact or kissing of the deceased at funerals). My JRDO KDV EHHQ WR UHIRFXV DWWHQWLRQ WR IDFWRUV WKDW LQĂ XHQFH the proliferation of Ebola epidemics that have traditionally been ignored. Inadequately funded and poorly supplied hospitals represent the single greatest transmission risk for the Ebola virus. Such conditions do not emerge in a “vacuum.â€? They have been caused by a long history of international intervention in Africa and perpetuated by actions in the West. We must unpack the “black boxâ€? of African poverty and poor health care and address it head-on, rather than try to awkwardly work around it. Too long have international “expertsâ€? and Western media maintained what I call “globalization doublethink.â€? There is intense fear that the Ebola virus could contribute mayhem and destruction were it to mutate and cross the Atlantic or Mediterranean. But there is little attention paid to the fact that in an increasingly interconnected world, global IRUFHV DQG LQWHUDFWLRQV FDQ DOVR Ă RZ WKH RSSRVLWH GLUHFWLRQ propagate inequality, and alter disease distributions. We need to recognize that our actions and policies towards foreign countries, policies, agricultural subsidies, and geopolitical struggles can have grave consequences for global health outcomes.

edy of Ebola and other human suffering is destined to play out. Our actions—the policies our governments enact, the deFLVLRQV LQWHUQDWLRQDO Ă€QDQFLDO LQVWLWXWLRQV PDNH WKH DJHQGDV laid down by major actors on the world stage—all have an impact on inequality and subsequently disease distribution. But these factors are not set in stone. We can, and should, change them. Governments in Africa should increase the healthcare spending in order to improve the quality of healthcare infrastructure and provide adequate supplies. OECD governments should untie aid;Íž currently about 60% of all aid to Africa is tied, meaning it must be spent on goods or services from the GRQRU FRXQWU\ YDQ GH :DOOH )RUHLJQ FRQVXOWDQWV Ă€nanced by African debt are clogging the decision-making apSDUDWXV LQ $IULFD ZLWK XQFHUWDLQ EHQHĂ€WV DQG VXEVWDQWLDO FRVW The US, EU, and Japan should end their massive agriculture VXEVLGLHV ZKLFK KDYH XQIDLUO\ Ă RRGHG WKH PDUNHW DQG ORZHUHG global prices, driving down African farmers’ incomes. The WTO should broker an agreement to provide trade protections to African manufacturers, particularly against China. Finally, Western donors must be prepared to fund costly infrastructure projects with few prospects for immediate benHĂ€W EXW WKH SRWHQWLDO WR YDVWO\ LPSURYH WKH SURGXFWLYLW\ RI the African economy and health of the African populace. These suggestions alone will not stop Ebola outbreaks, nor will they end African poverty. My aim has not been to write a policy report but to highlight the limitations of such culConclusion turalist discourses of epidemiology and call for greater attenIn this paper, I have argued that the culturalist tion to the more salient features of Ebola epidemics in Africa. epidemiology that dominates the study of Ebola is limiting. I call upon policymakers and citizens alike to recognize the ,W H[RWLFL]HV WKH GLVHDVH DQG UHFRQĂ€JXUHV DVVXPSWLRQV DERXW globalized effects of their actions, shift their focus from cula vaguely monolithic African culture into causal explanations tural to structural factors in Ebola epidemics, and work tofor the spread of infection. Culture becomes a “risk factor,â€? wards diminishing inequality and poverty rather than altering a DQG WKH IRFXV RI MRXUQDOLVWLF DFFRXQWV DQG RIĂ€FLDO UHSRUWV DOLNH UHLĂ€HG ´FXOWXUHÂľ ZKHQ LPSOHPHQWLQJ RXWEUHDN FRQWURO HIIRUWV Anthropologists are only called in to help correct the problem. They are asked to identify cultural “beliefsâ€? with presumed deterministic power over behaviors that may spread Ebola. An- References thropologists are tasked with designing education campaigns, explaining the actions of international health teams to locals, Associated Press. (1989, December 2). Deadly Virus Discovered in Laboratory Monkeys. New York Times. and designing “culturally sensitiveâ€? intervention strategies. Anthropology does itself a disservice by agreeing to CDC. (2009). Ebola hemorrhagic fever information packet. Atlanta: CDC, serve in this circumscribed capacity. It should not be a reduced U.S. Department of Health and Human Services. study of culture or the exotic. It is the ultimate contextualizing &11 5HWXUQ WR WKH +RW =RQH (EROD 9LUXV 2XWEUHDN LQ =DLUH discipline, and it ought to embrace its role as such. This means recognizing how social, political, historical, economic, and ide- 'L*LDFRPR 6 0 &DQ WKHUH EH D Âś&XOWXUDO (SLGHPLRORJ\¡" 0HGLFDO ological factors affect patterns of disease emergence and pro- $QWKURSRORJ\ 4XDUWHUO\ liferation. I have argued that in the case of Ebola, inadequately (GLWRULDO 0D\ :KR :LOO %H WKH :RUOG¡V 'RFWRU" 7KH 1HZ <RUN funded hospitals allow single index cases to explode into full- Times. blown epidemics. We must now open up the “black boxâ€? of African poverty and ask why healthcare provision is so deriso- Folola, L & Afolabi, N. (2007). The Human Cost of African Migrations. New ry, why Africa remains so poor and unequal. Neither is this an York, NY: Routledge Taylor and Francis Group. academic exercise in the assignment of blame. Exploring the Farmer, P. (1999). Infections and Inequalities: The Modern Plagues. Berkeley, answers to such questions can reveal what concrete steps we CA: University of California Press. can take to limit disease outbreaks and improve the quality of lives of Africans who must endure economic stagnation, politi- )R[ 0 -DQXDU\ (EROD 0D\ &RPH IURP ÂśEXVK PHDW¡ VWXG\ 5HXWHUV cal turmoil and repression, and shockingly high mortality rates. Garrett, L. (2000). Betrayal of trust: the collapse of global public health. New My principal argument has been that global structural forc- York, NY: Hyperion. es, not cultural beliefs or practices, condition the emergence and spread of Ebola epidemics. But these forces are not unalterable. Garrett, L. (1994). The coming plague: newly emerging diseases in a world out African poverty is not a permanent canvas on which the trag of balance. New York, NY: Penguin Books. 5

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Research Articles Good, B. J. (1994). Medicine, rationality, and experience: an anthropological perspective. Cambridge: Cambridge University Press. Hayward, F. (1986). In search of stability: independence and experimentation. In the Africans: a reader. New York, NY: Praegar Publishers. Hewlett, B. S. & Bonnie L. H. (2008). Ebola, culture, and politics: the anthropology of an emerging infectious disease. Belmont, CA: ThomsonWadworth.

Packard, R., & Epstein, P. (1991). Epidemiologists, social scientists, and the structure of medical research on AIDS in Africa. Social Science and Medicine, 33(7), 771-794. Preston, R. (1994). The hot zone: a terrifying true story. New York, NY: Random House. Rizkalla, C, Blanco-Silva F., & Gruver, S. (2007). Modeling the impact of ebola and EXVKPHDW KXQWLQJ RQ ZHVWHUQ ORZODQG JRULOODV (FR+HDOWK

Lashley, F. & Durham, J. (2007). Emerging infectious diseases: trends and issues. New York, NY: Springer Publishing company.

Schoepf, B. G., Schoepf C., & Millen, J. V. (2000). Theoretical therapies, remote remedies: SAPs and the political ecology of poverty and health in Africa (pp. 97-126). In Kim, J. Y., Millen, J. V., Irwin, W, & Gershman, J., eds. Monroe, Maine: Common Courage Press.

Lamunu, M., Lutwama, J. J., Kamugisha, J., Opio, A., Nambooze, J., Ndayimirijie, N., (‌) Okware, S. (2006, March). Paper presented at the 10th International Congress on Infectious Disease, Singapore.

van de Walle, N. (2001). African economies and the politics of permanent crisis, 1979-1999. Cambridge: Cambridge University Press.

Mamdani, M. (1996). Citizen and subject: contemporary Africa and the legacy of late legalism. Princeton, NJ: Princeton University Press.

:DGH 1 6HSWHPEHU 0HWKRG DQG PDGQHVV WKH QH[W SODJXH DQG WKHQ next. The New York Times.

Mkandawire, T, & Soludo, C. C. (1999). Our continent, our future: African perspectives on structural adjustments. Trenton, NJ: African World Press.

WHO. (2003). Malaria is alive and well and killing more than 3000 African children every day. [Press Release]. Geneva: World Health Organization.

Moss, T. J. (2007). African development: making sense of the issues and actors. Boulder, CO: Lynne Rienner Publishers.

WHO (2007). Ebola Haemorrhagic Fever in the Democratic Republic of the Congo. Geneva: World Health Organization.

Political Systems and Health Inequity: Connecting Apartheid Policies to the HIV/AIDS Epidemic in South Africa Victoria Scrubb University of Toronto, Toronto, ON, Canada Abstract South Africa’s transition to a post-apartheid government marked a new era of liberation and equality for black South Africans. However, the notions of white supremacy and racial segregation, ideologies of apartheid government, continue to hinder the South African government’s attempts to restructure its healthcare system. In addition, new economic drives toward privatization act as a new barrier to the achieving of equality in the South African healthcare system. The persistent inequality in the delivery of health care within South Africa is illustrated in the nation’s distribution of HIV/AIDS;͞ black South Africans bear the highest burden of disease. This paper argues that the current inability of the South African government to adequately address the HIV/AIDS epidemic is symptomatic of still-existing apartheid ideologies in the healthcare system, faulty public-private relationships, and structural gaps between health policy making and implementation. $SSUR[LPDWHO\ PLOOLRQ SHRSOH LQ 6RXWK $IULFD DUH FXUrently living with HIV, and of these people, 3.2 million are women and 280,000 are children under age 14. 17.8% of 6RXWK $IULFDQ DGXOWV DJHG WR DUH OLYLQJ ZLWK +,9 DQG there are almost 2 million South African children under age 17 who have been orphaned due to HIV/AIDS (UNAIDS, 2011). By overlapping historical analysis of apartheid health policies with current neoliberal discourse, we can witness patterns emerging between HIV/AIDS treatment and incidence disparities and South Africa’s political and economic policies. Starting in 1948, black South Africans became the target of exclusionary and exploitive laws that separated South Africans on the basis of race. The government forced black JGH t Volume 1 t Issue 1 t Spring 2011

South Africans to live in designated areas that were separate from areas inhabited by white South Africans. These areas, known as Bantustans, comprised of merely 13% of South Africa in size but were home to over 80% of the population (Price, 1986). In each Bantustan, a large number of which were situated in rural South $IULFD KHDOWK FDUH ZDV SULPDULO\ SURYLGHG E\ QRQ SURĂ€W PLVsionary hospitals and overseen by local elites. By giving control of the healthcare system to individual Bantustans, the national government of South Africa essentially removed its responsibility to monitor and account for the quality of health services in those areas. Due to little government regulation and oversight of privatized health care during apartheid, health services in Bantustans frequently ignored quality-of-care guidelines and became 6

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places of abuse and maltreatment (Kon & Lackman, 2008). In many cases, black South Africans who resided in urban areas were largely employed as caregivers, cooks and laborers, and other jobs that put them in contact with the white South African population. Basic health services were provided by the South African government to urban blacks to prevent them from spreading disease to the white South African population that inhabited urban areas (Price 1986). Because very few white South Africans resided in Bantustans, there was little interest amongst South African health policymakers to ensure that basic health care would be provided in rural hospitals. The odds of continuous contact between black populations of Bantustans and white South African populations were low. Almost two decades after the end of apartheid, vast disparities exist in South African HIV/AIDS prevalence and health care. For example, HIV prevalence in the more urbanL]HG :HVWHUQ &DSH SURYLQFH LV DW LQ FRPSDULVRQ WR KwaZulu-Natal, which has an HIV prevalence of 39.1% (UNAIDS, 2011). In addition, infant mortality was 20% among EODFNV EXW RQO\ DPRQJ ZKLWHV OLIH H[SHFWDQF\ ZDV years for blacks and 70 years for whites. There was one physician for every 330 whites but only one for every 91,000 blacks (Kon & Lackman, 2008). In addition to diffusing its responsibility to provide national health services, the apartheid-era government limited the budgets for rural health systems. In 1978, for example, merely 0.23% of the South African GNP was allocated to health systems in Bantustans whereas as 2.3% was given to urban health centers (Price, 1986). Even while Bantustan health care was already subject to limited funding and inferior services, the organization and execution of health care within rural areas furthered ethnic divisions. Delivery was organized through ethnically segregated health services that simultaneously reinforced apartheid ideologies of racial division. Hospitals in Bantustans were “staffed by people from the ethnic group of the relevant authority and who were supposed to treat only patients of the same ethnic groupâ€? (Price, 1986). As a result, workers and patients were forced to think not only in terms of black and white but also in terms of their sub-ethnic identity, in a setting of communities subdivided based on kinship lineages and marriage. This, in turn, contributed to ethnic consciousness centered on the belief that people needed to be separated into ethnically hoPRJHQRXV QDWLRQ VWDWHV LQ RUGHU WR PLQLPL]H FRQĂ LFW 6XFK relationships illustrate the broader connection between politics, socialization, and health outcomes. Moreover, even after the end of apartheid, the goals of securing white supremacy and promoting racial segregation set by the apartheid government continued to inhibit South Africa’s potential to implement effective health policies that aimed to reduce social disparities in terms of access, quality of service, and treatment. Driven by the growing needs of the South African urban middle class during the 1980’s, the emergence of the private KHDOWKFDUH V\VWHP KDV PDGH LW LQFUHDVLQJO\ GLIĂ€FXOW IRU EODFN South Africans to access high quality public health care and WUHDWPHQW +XQWHU 'HVSLWH WKH IDFW WKDW RQO\ RI the South African population has access to the private healthFDUH VHFWRU SDWLHQWV UHFHLYHG VXEVLGLHV DQG WD[ EHQHĂ€WV IRU contributing to the private health sector (Kon & Lackman, 2008). The majority of private health facilities are located

in urban areas, not accessible to the black population of the Bantustans. The high costs of private healthcare made it especially unaffordable for indigenous, black South Afrcians .RQ /DFNPDQ 0RUHRYHU WKH LQà X[ RI IXQGLQJ into the private sector has drawn medical professionals out of public facilities due to the attractiveness of sounder infraVWUXFWXUHV DQG KLJKHU SURÀW PDUJLQV LQ WKH SULYDWH KHDOWKFDUH sector. By the early 1980’s, 40% of South African healthcare professionals worked in the private sector, but, by the 1990s, that percentage had climbed to 66% (Kon & Lackman, 2008). Overcoming the unequal distribution of human resources between the public and the private healthcare system is a major existing problem in South Africa. Health care professionals in rural clinics tend to have more poorly developed skills and less management experience, and the entire South African public KHDOWK V\VWHP LV SODJXHG E\ XQGHUVWDIÀQJ DQG RYHUFURZGLQJ of patients (Coovadia et al., 2009). Compounded by the presence of hundreds of community health workers sponsored by non-governmental organizations, there is little standardization in terms of the training, oversight, and supervision of South African healthcare workers, which ,in turn, has compromised the delivery of key programs in child health, maternal health, tuberculosis, and HIV/AIDS (Coovadia et al., 2009). In 1990, when privatization of healthcare was still in its elementary stages, the HIV/AIDS prevalence was 0.7% in South Africa;͞ however, by 1994, the HIV/AIDS prevalence was 8%. When the post-apartheid government came into power, it promised to alleviate the division between the public and private VHFWRUV WKURXJK WKH XQLÀFDWLRQ RI %DQWXVWDQ KHDOWK V\VWHPV under the jurisdiction of provincial and national healthcare systems. As a result, the rural health sector was consolidated from 400 independently-run local systems into nine provincial healthcare systems (Kon & Lackman, 2008). Although responsibility for implementing public programs remained at the provincial level, the national government sought to ensure that the collection and distribution of revenue was equitable, and it set new standards for service provision (Schneider & Stein, 2001). In collaboration with the National AIDS Committee of South Africa, the new government also introduced a National AIDS Plan that would place the prevention and treatment of HIV/AIDS at the forefront of the nation’s health policy. Under the leadership of the post-apartheid government, the National AIDS Plan initiated a cooperative effort to alleviate the burden of HIV/AIDS on the South African population through the promotion of primary health care, preventative interventions, and educational initiatives regarding condoms, safe sex and treatment options—all of which focused heavily on government action via the local level (Wouters, Rensburg, & Meulemans, 2010). While the push to offer such programs to South Africans at the local level was a progressive idea that recognized local diversity and attempted to strengthen the Bantustan health system, the National AIDS Plan grossly overlooked the inability of existing functional organizations and infrastructures to comply with the new standards. South African healthcare became increasingly fragmented and decentralized by this particular policy. At the time, local leaders were ill-equipped to manage the organizing, problem solving, and coordinating needs of the National AIDS Plan (Schneider & Stein, 2001). Consequently, the National 7

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AIDS Plan was unable to counter the transmission of HIV/ AIDS or provide necessary treatment to HIV-positive patients. The failure of the post-apartheid government to address HIV/AIDS highlights the importance of making policies compatible with feasible implementation strategies. The National AIDS Plan was a strategy that was hampered by political instability, concurrent societal reconstruction, and a weak preexisting healthcare infrastructure. A likely result of the demands made by the black South African population for treatment, government funding for the treatment of HIV/AIDS rose IURP LQ WR LQ :RXWHUV HW DO Since the seeming failure of the second government’s attempt to mount a national strategy against HIV/AIDS and decrease HIV/AIDS mortality and prevalence, the international community has vehemently criticized the inability of the South African government to adequately address the needs of civil society, to involve its citizens in the process of healthcare policy making, and to address the lack of overall governmental accountability in the provision and division of healthcare funds. As a result, the latest National Strategic Plan on AIDS 2007-2011 has incorporated national, non-governmental, and civil bodies, and it has been hailed as “South Africa’s most dynamic and comprehensive document yet on AIDS issuesâ€? (Wouters et al., 2010). The National Strategic Plan prioritized prevention of HIV (mother to child and among youth), HIV treatment, and HIV research, monitoring and surveillance, with an emphasis on increasing access to HIV/AIDS treatment (Wouters et al., 2010). However, while the National Strategic Plan 2007-2011 has addressed numerous pressing issues from previous policy failures, it nonetheless fell short of its goals. The main objective of the 2007-2011 Plan was to extend treatment to the majority of people with HIV/AIDS;Íž however, because of poor budgeting and limited human resources, the potential success of this plan was unmet, leading instead to a decrease in treatment options for people with HIV/AIDS. Additionally, the private sector continues to harbor the majority of healthcare professionals even though the public sector supports 82% of South Africans (Wouters et al., 2010). Despite the population’s dependence on the public healthcare system, only one out of every three South African doctors works in the public sector, which has become heavily supported by professional nurses. Yet, at the same time, the ratio of nurses to patients within the South African healthFDUH V\VWHP DV D ZKROH KDV GHFOLQHG IURP WR SHU South Africans between 1994 and 2007 (Wouters et al., 2010). Although the National Strategic Plan 2007-2011 was formulated using a multi-sector, interdisciplinary approach and with consideration of the failures of past plans, its ideals and aims failed to be in sync with its actual capacity for implementation. As South Africa nears the end of its latest National Strategic Plan, it is moving closer to developing manageable and feasible ways to address HIV/AIDS. Review and evaluation of WKH VXFFHVV RI WKH FXUUHQW SODQ ZLOO XQGRXEWHGO\ SRLQW WR Ă€nancial budgeting and equal distribution of human resources as key areas for improvement. It is important to be mindful that the elimination of social services that help black South Africans obtain jobs and education and the increasing privatization of the South African healthcare system would further push poor black South African communities into situations of inequity, analogous to those seen during apartheid.

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The South African government inherited a political system characterized by unequal distribution of wealth and resources in addition to the challenge of rising HIV/AIDS prevalence in its black population. Whereas the private sector was largely supported by the international community and continues to provide high quality care, it is also extremely limited in scope. Despite increased pressure from international communities to reduce public healthcare expenditure in favor of privatization, the government should be more conscious of the needs of the black South African population when making healthcare policies. Similar to the HIV and AIDS and STI National Strategic Plan 2007-2011, long term solutions that address funding and the redistribution of human resources will give South Africa the potential to overcome the legacy of apartheid and effectively reduce the impact of HIV/AIDS on the South African population.

References Coovadia, H., Jewkes, R., Sanders, D., & McIntrye, D. (2009) The health and health systems of South Africa: historical roots of current health challenges. The Lancet, 374, 817-834. Hunter, M. (2010) Beyond the male-migrant: South Africa’s long history of health geography and the contemporary AIDS pandemic. Health and Place, 16 Kon, Z. & Lackan N. (2008) Ethnic disparities in access to care in post-apartheid South Africa. American Journal of Public Health, 98(12), 2272-2277. Price, M. (1986) Health care as an instrument of Apartheid policy in South Africa. Health Policy and Planning, 1 Schneider, H. & Stein, J. (2001) “Implementing AIDS policy post-apartheid South $IULFDÂľ 6RFLDO 6FLHQFH DQG 0HGLFLQH UNAIDS (2011). South Africa Nation Overview. Retrieved from: www.unaids.org/ en/Regionscountries/SouthAfrica/ Wouters, E., Rensburg, HCJ. & Meulemans, H. (2010) The National Strategic Plan of South Africa: what are the prospects of success after the repeated failure of SUHYLRXV $,'6 SROLF\" +HDOWK 3ROLF\ DQG 3ODQQLQJ

Research Articles

7KH ,QĂ XHQFH RI /LSRG\VWURSK\ DQG Traditional Medicine on ART Adherence in Tanzania Sajida J Kimambo1, Lillian N Mtei1, Robin J Larson2, Johnson J Lyimo1, Muhammad Bakari1, Susan Tvaroha3, Lisa V Adams3, Kisali Pallangyo1, C. Fordham von Reyn3 1 Muhimbili University of Health and Allied Sciences, Dar es Salaam, Tanzania, 2 VA Outcomes Group, White River Junction, VT, USA, 3 Infectious Disease and International Health, Dartmouth Medical School, NH, USA. Abstract Administration of antiretroviral therapy (ART) to HIV-infected patients is a major public health priority in resource-limited settings. Emerging data from resource-limited settings suggest that rates of ART adherence are comparable to those reported in European and North $PHULFDQ FRXQWULHV +RZHYHU GDWD RQ LQLWLDO DFFHSWDQFH RI $57 DQG IDFWRUV DIIHFWLQJ DGKHUHQFH DUH YHU\ OLPLWHG :H DVVHVVHG WKH LQĂ Xence of lipodystrophy (LD) and the use of traditional medicine (TM) on acceptance of and adherence to ART among HIV-infected subjects in Tanzania eligible for treatment. ART eligible subjects who had either accepted or refused ART were interviewed and examined to: a) assess their use of traditional medicine, and b) identify perceived (patient self report and physician examination) and objective (anthropometric measurement-based) features of LD. Concern about lipodystrophy was reported to affect acceptance of ART by 19 patients (36%) who accepted ART (p < .01) and affect adherence to ART amongst 3 patients (6%) who accepted ART. Perceived features of lipodystrophy ZHUH QRWHG E\ SDWLHQWV ZKR DFFHSWHG $57 DQG SDWLHQWV ZKR UHIXVHG $57 S 7UDGLWLRQDO PHGLFLQH ZDV XVHG E\ RI VXEMHFWV LQ ERWK JURXSV DQG DIIHFWHG $57 DFFHSWDQFH LQ D RI SDWLHQWV ZKR UHIXVHG $57 E RI SDWLHQWV ZKR accepted ART. Features of LD are common among patients on ART in Tanzania, and we believe that it may have a substantial effect on ART acceptance but not ART adherence. TM use is common, and it may also have a modest effect on both ART acceptance and adherence.

Introduction routine clinical care sessions, several factors emerged as potential reasons for non-acceptance of ART. These included the IHDU RI ERG\ FKDQJHV DVVRFLDWHG ZLWK IDW UHGLVWULEXWLRQ GHĂ€QHG as lipodystrophy) and use of traditional medicine. While rates of ART-associated lipodystrophy are not known in Tanzania, reported rates in various developing countries have ranged from 9% to 34% (Multimura, Stewart, Rheeder, & Crowther, 2007;Íž Osler, Stead, Rebe, Boulle & Meintjes, 2007). This wide range is likely due to different study designs, different durations of HIV infection, and different types of ART regimens. 8VH RI WUDGLWLRQDO PHGLFLQH ZDV DOVR LGHQWLĂ€HG DV D potential barrier to the initiation of ART. The use of traditional medicine is common in Sub-Saharan Africa;Íž it is one that predates the advent of the modern medical practices that promote ART. According to the World Health Organization’s GHĂ€QLWLRQ RI ´WUDGLWLRQDO PHGLFLQH Âľ LW HQWDLOV WKH ´NQRZOHGJH skills and practices based on the theories, beliefs and experiences indigenous to different cultures that are used to maintain health, as well as prevent, diagnose, improve or treat physical and mental illnessâ€? (WHO Media Centre, 2008). In Tanzania, for example, the ratio of traditional healers to the population LV DV RSSRVHG WR D UDWLR RI IRU DOORSDWKLF SK\VLcians. Again, limited data is available on the effect of traditional medicine use on ART acceptance. In this report, we present data on patient self-assessment and physician assessment of lipodystrophy, as well as anthropometric measurements from an HIV-infected trial population in Dar es Salaam, Tanzania. Also, we summarize attitudes toward ART use as they relate to concerns about lipodystrophy and use of traditional medicine.

Antiretroviral Therapy (ART) consists of drug combinations that are used in the treatment of HIV infection. It is usually a combination of at least three drugs, including a Nucleoside or Nucleotide Reverse Transcriptase Inhibitor (NRRTI), a Non-Nucleoside Reverse Transcriptase Inhibitor (NNRTI), and a Protease Inhibitor (PI). Since 2003, various international initiatives have supported efforts to increase ART access for people living with HIV in low-income countries. At the end of 2008, more than 4 million people were receiving ART, two-thirds of whom were from Sub-Saharan Africa. The use of antiretroviral therapy has been found to decrease the severity of HIV/AIDS-related illnesses, de crease mortality, and improve survival among HIV/AIDS patients. As access to ART continues to increase in resourcelimited settings, it is important to understand factors that LQà XHQFH +,9 WUHDWPHQW LQLWLDWLRQ DQG GUXJ DGKHUHQFH It has been found that among patients who accept ART in resource-limited settings, rates of adherence are comparable to those reported in industrialized countries (Gill, Hamer, 6LPRQ 7KHD 6DELQ /DXUHQW HW DO 6SDFHN HW al., 2006). However, data on correlates of HIV-infected patients’ initial acceptance of ART in resource-limited settings are not widely available (Fisher et al., 2006;͞ Hardon et al., 2007;͞ Karcher, Omondi, Odera, Kunz & Harms, 2007). Based on our experiences with ART adherence and acceptance among HIV-infected patients enrolled in a TB vaccine trial in Tanzania, almost 30% of ART-eligible patients who we worked with were reluctant to accept ART. From our discussions with patients during 9

JGH t Volume 1 t Issue 1 t Spring 2011

Research Articles We hypothesized that lipodystrophy is common among patients on ART in Tanzania. In addition, we hypothesized that fear of lipodystrophy may contribute to decreased likelihood of ART initiation. Among patients who initiated ART, fear of lipodystrophy may also contribute to reduced likelihood of adherence to ART medication. Similarly, traditional medicine is common among HIVinfected patients in Tanzania, and it may also contribute to decreased likelihood of ART initiation. Among patients who initiated ART, use of traditional medicine may contribute to decreased likelihood of ART adherence.

Methods Subjects and Survey 3DUWLFLSDQWV ZHUH LGHQWLĂ€HG IURP D FRKRUW RI HIV-infected persons participating in the DarDar Study. Initiated in 2001, the DarDar study is a Dartmouth Medical School/ Muhimbili University of Health and Allied Sciences (MUHAS) collaborative phase III trial to evaluate a BCG prime-boost vaccine strategy for the prevention of HIV-associated tuberculosis (TB) (Vuola et al., 2003). We gratefully acknowledge the support of and contributions made by the participants and the staff of the DarDar Study. In the DarDar study, participants were ambulatory HIVinfected subjects over the age of 18 years with a CD4 count > 200/mm3, two positive ELISA tests for HIV, a BCG scar, and no evidence of active TB. They were followed every three months for routine clinical care with periodic laboratory analyses. At each visit, subjects who met 2003 World Health Organization HIV Care and Treatment criteria for ART treatment initiation were counseled and referred to ART clinics. Subjects who missed scheduled appointments were traced through phone calls and home visits. ,Q $SULO ZH LGHQWLĂ€HG VXEMHFWV LQ WKH 'DU'DU 6WXG\ database (N =2013) whose CD4 count had fallen to <200 cells/mm3 during follow-up and had been referred for ART treatment (N =448). After exclusion of 93 subjects ZKR KDG GLHG RU ZHUH XQUHDFKDEOH $57 HOLJLEOH VXEMHFWV ZHUH VWUDWLĂ€HG DFFRUGLQJ WR ZKHWKHU WKH\ KDG LQLWLated ART (N =246, 69%) or had not (N =109, 31%). A convenience sample was then selected from each group. In choosing subjects taking ART (ARTpos), priority was given to those with the longest duration of ART treatment. In choosing subjects who were not taking ART (ARTneg), priority was given to those with the longest duration of ART-eligibility without treatment. Selected subjects were informed of the study and invited to participate via telephone contact or home visit to account for phone unavailability. Participation in the study was voluntary and interested subjects were scheduled to come to the clinic for the interview and examination with reimbursement of transportation costs. Subjects who wished to participate but were unable to come to the clinic were interviewed and examined LQ WKHLU KRPHV $OO VXEMHFWV ZKR ZHUH FRQWDFWHG $57SRV DQG $57QHJ DJUHHG WR SDUWLFLSDWH 7KH ,QVWLtutional Review Boards of Dartmouth College and MUHAS approved the DarDar Study and this particular sub-study. JGH t Volume 1 t Issue 1 t Spring 2011

A survey was used to assess subjective perceptions of and attitudes toward lipodystrophy, as well as use of and attitudes toZDUGV WUDGLWLRQDO PHGLFLQH 7UDGLWLRQDO PHGLFLQH ZDV GHĂ€QHG DV use of alternative therapy in form of herbal, liquid, pill-form, injectable and other medicines that were not prescribed by a licensed medical doctor. Questions included both open-ended and closed-ended formats, which were answered via Likert-type scales and multiple-choice items. The questions were expert-reviewed by faculty members at Dartmouth College’s Centers for Evaluative Clinical Science. The questions on the survey were translated into Kiswahili and piloted on 10 subjects at the study site. CronEDFK¡V DOSKD DOSKD ZDV FDOFXODWHG WR DVVHVV WKH VXUYH\¡V internal reliability. One investigator who was not blinded to ART VWDWXV DGPLQLVWHUHG DOO RI WKH Ă€QDO TXHVWLRQQDLUHV DQG SHUIRUPHG all subjective physician assessments of lipodystrophy. Subjects were asked to report perceived morphological body changes in various areas of their body including shoulders, breast, abdomen, face, hips, buttocks, arms, and legs within the past year. Perceived changes were graded as “subtle,â€? “moderate,â€? or “severe.â€? Anthropometric measurements Height, weight, mid-upper arm circumference (MUAC), hip-circumference, and waist-circumference were measured according to the Lohman anthropometric standardization manual (Lohman, Roche, & Martorell, 1988). Height was measured with a stadiometer and weight measured (in kg) by a beam balance in kg (without shoes). Using a tape measure (in cm), waist circumference was measured at the narrowest area around the waist just above the navel, hip circumference was measured at the largest extension of the buttocks, and MUAC was measured halfway between the acromium and the olecranon of the non-dominant arm. All measurements were obtained in the absence of outer clothing. Waist-to-hip ratio (WHR) was calculated by dividing waist circumference by hip circumference. A waist size of >102 FP LQ PHQ DQG ! FP LQ ZRPHQ DQG D :+5 RI ! LQ PHQ and >0.80 in women were regarded as abnormal (Dalton et al., +DQ /HHU 6HLGHOO /HDQ %RG\ PDVV LQGH[ %0, was calculated in kg/m2 from the measured weight and height. /LSRG\VWURSK\ ZDV GHĂ€QHG EDVHG RQ ERG\ FKDQJHV associated with fat redistribution in HIV infected patients, combining self-report data from participants with clinical assessment by the healthcare provider (Andrew & HIV LipodystroSK\ &DVH 'HĂ€QLWLRQ 6WXG\ *URXS 6XEMHFWV ZHUH DVNHG WR report perceived morphological body changes in various areas of their body including shoulders, breast, abdomen, face, hips, buttocks, arms and legs within the past year. If they had noWLFHG VSHFLĂ€F ERG\ PRUSKRORJLFDO FKDQJHV ZLWKLQ WKH ODVW \HDU they were asked to identify the changes as mild, moderate, or severe. The examining physician made subjective assessments at the time of the study visit and used three analogous categoULHV WR UDWH WKH VHYHULW\ RI HDFK OLSRG\VWURSK\ IHDWXUH LGHQWLĂ€HG Demographic and patient information was obtained from the DarDar study database, which contained clinical, immunological, and virological information of the study population. The VDPSOH VL]H FDOFXODWLRQ ZDV EDVHG RQ Ă€QGLQJV IURP D SUHYLRXV survey at the DarDar study site that showed the use of traditional medicine (TM) by 8% of subjects not on ART and, it estimated that the rate would be increased to 33% among patients who 10

Research Articles were on ART. A sample size of 48 subjects in each group was Prevalence of lipodystrophy by subjective assessments FDOFXODWHG WR SURYLGH D VXIĂ€FLHQW SRZHU WR GHWHFW D GLIIHUAs seen in Table 2, patients who accepted ART were more HQFH LQ 70 XVH EHWZHHQ WKH WZR JURXSV DOSKD EHWD likely than patients who refused ART to report each of seven morphological changes that are characteristic of lipodystroData analysis SK\ SDWLHQWV ZKR DFFHSWHG $57 LQGLFDWHG DW OHDVW Microsoft Excel and STATA version 9.2 were used for statistical analysis. Group comparisons were done using t-tests, one element of peripheral fat loss or central fat redistribuFKL VTXDUH WHVWV DQG UDQN VXP WHVWV $ WZR VLGHG S ZDV tion, compared to 11 patients (21%) who refused ART. A similar percentage of patients who accepted ART and paWKH WKUHVKROG IRU VWDWLVWLFDO VLJQLĂ€FDQFH tients who refused ART indicated at least one element of peripheral fat loss or central fat distribution (respectively, 39 Results VXEMHFWV YV VXEMHFWV :KLOH WKH UDWLQJV IRU each component of lipodystrophy were also similar between Participant characteristics Participant characteristics based on whether or not they physician and subjects, physicians typically judged the sewere taking ART are indicated in Table 1. Patients who ac- verity of lipodystrophy as less severe than the subjects did. FHSWHG $57 ZHUH VLJQLĂ€FDQWO\ ROGHU PHDQ DJH LQ FRP- Overall, the agreement between patient and physician subparison to 38 years of age, p = .04), had been aware of their jective assessments of lipodystrophy was fair (kappa = 0.3). diagnosis of HIV longer (median duration 6 versus 4 years, Table 2. Subjective assessments of body morphological changes by subjects and physicians p = .02), and had higher CD4 counts (median of 296 cells/ ___Subject self-assessment___ Physician subjective assessment mm3 versus 160 cells/ mm3, p < .01). Both groups were ARTpos ARTneg ARTpos ARTneg predominantly female (82 subjects, 78%), single (70 subN = 52 N = 53 N = 52 N = 53 p-value n (%) n (%) p-value n (%) n (%) Any body morphological MHFWV DQG KDG QR PRUH WKDQ D SULPDU\ HGXFDWLRQ 0.001 39 (75) 11 (21) 0.0001 37 (71) 15 (29) change VXEMHFWV 7KH PDMRULW\ VXEMHFWV UHSRUWHG Subtle 5 (10) 10 (19) 15 (29) 9 (17) Moderate 14 (27) 1 (2) 15 (29) 6 (11) that a household member knew of their HIV-positive status. Severe 20 (38) 0 (0) 7 (13) 0 (0) Any fat gain in breast 17 (33) 2 (4) 0.001 NA NA $PRQJ WKH SDWLHQWV ZKR DFFHSWHG $57 VXEMHFWV Subtle 4 (8) 1 (2) Moderate 5 (10) 1 (2) were taking a combination of stavudine, lamivudine and neviSevere 8 (15) 0 (0) rapine. Protease inhibitors had not been used by any patient. 0.14 Any fat gain in shoulders 6 (12) 0(0) 0.01 6 (12) 2 (4) Subtle 1 (2) 0 (0) 6 (12) 2 (4) The median duration of ART use was 22 months. 14 subjects Moderate 1 (2) 0 (0) 0 (0) 0 (0) Severe 4 (8) 0 (0) 0 (0) 0 (0) (27%) reported a change had been made in their ART regi0.11 Any fat gain in abdomen 26 (50) 2 (4) 0.0001 21 (40) 11 (21) PHQ $ FKDQJH LQ $57 UHJLPHQ ZDV GHĂ€QHG DV WKH FKDQJH RI Subtle 5 (10) 2 (4) 9 (17) 6 (12) Moderate 11 (21) 0 (0) 9 (17) 5 (10) one or more antiretroviral drug in the patient’s regimen that Severe 10 (19) 0 (0) 3 (6) 0 (0) 0.002 Any fat loss in face 26 ( 50) 6 (11) 0.0001 19 (37) 3 (6) was recommended by a physician. 10 of these changes (77%) Subtle 8 (15) 5 (9) 7 (13) 2 (4) Moderate 9 (17) 1 (2) 10 (19) 1 (2) were due to ART-related side effects including peripheral neuSevere 9 (17) 0 (0) 2 (4) 0 (0) ropathy, gastro-intestinal symptoms, and mood and anxiety 0.001 Any fat loss in arms and legs 25 (48) 5 (10) 0.0001 15 (29) 0 (0) Subtle 6 (12) 4 (8) 8 (15) 0 (0) disorders. Self-guided discontinuation of ART was reported Moderate 7 (13) 1 (2) 4 (8) 0 (0) Severe 12 (23) 0 (0) 3 (6) 0 (0) by 2 (4%) subjects;Íž one of them due to “attached stigmaâ€? and Any fat loss in hips and 0.0001 buttocks 26 (51) 5 (10) 0.0001 16 (31) 0 (0) the other because of excessive waiting time at the ART clinic. Subtle 7 (13) 4 (8) 9 (17) 0 (0) Moderate Severe Any prominent veins in arms & legs Subtle Moderate Severe

Table 1. Characteristics of survey subjects, according to ART status (all ART-eligible).

Age in years, mean (range)

ARTpos

ARTneg

N = 52

N = 53

41 (24-58)

38 (25-59)

Male, n (%)

13 (25)

10 (19)

Female, n (%)

39 (75)

43 (81)

Married/cohabiting, n (%)

16 (31)

18 (35)

Single, n (%)

36 (69)

34 (65)

p-value 0.042

0.45

0.67

Highest education 1 (2)

1 (2)

26 (50)

30 (57)

Secondary education, n (%)

22 (42)

19 (36)

3 (6)

3 (6)

0.92

6 (3-19)

4 (2-14)

0.02

College education or higher, n (%) Yrs since HIV diag. median (range) HIV- positive status known to any

38 (76)

37 (71)

0.58

household member n (%) CD4 count, median (range)*

296 (108-760)

160 (3-207)

21 (40) 3 (6) 8 (15) 10 (19)

4 (8) 3 (6) 1 (2) 0 (0)

0.0001

5 (10) 2 (4)

0 (0) 0 (0)

14 (27) 8 (15) 3 (6) 3 (6)

2 (4) 2 (4) 0 (0) 0 (0)

0.01

*Grades based on physician assessment

Subtle- No change in clothing fit

Subtle-Noticeable only if specifically looked for

Moderate- Clothing has become tight on loose

Moderate- Easily noticeable to provider

Severe- Has required a change in clothing size

Severe- Obvious to casual observer

Prevalence of lipodystrophy by anthropometric measurements Table 3 illustrates the anthropomorphic measurements collected to objectively assess the prevalence of body changes according to ART status. Female patients undergoing ART KDG VLJQLĂ€FDQWO\ ORZHU 08$& DQG KLS FLUFXPIHUHQFH YDOXHV (p = .01 and p = .02 respectively) than male patients who were undergoing ART. The difference between the mean waist circumferences of men who accepted ART and those of men ZKR GLG QRW DFFHSW $57 ZDV LQVLJQLĂ€FDQW FP YV FP p =. 12). Both male and female patients who accepted ART had VLJQLĂ€FDQWO\ KLJKHU PHGLDQ :+5V DQG S DQG p < .01) and appeared to be more likely to exceed thresholds IRU DQ DEQRUPDO :+5 YV S IRU PHQ DQG vs. 83%, p= 0.09 for women) than patients who refused ART.

Marital status

Primary education, n (%)

1 (2) 0 (0)

NA = not available *Grades based on subject self-assessment:

Gender

No education, n (%)

8 (15) 11 (21)

0.0001

* Most recent value.

11

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Research Articles

Prevalence and beliefs regarding traditional medicine use As seen in Table 4, about half of subjects, regardless of ART status, had a history of traditional medicine use. Among patients who had used traditional medicine at least once, the median duration of use was 6 months in patients who accepted ART and 2 months in patients who refused ART (p = 0.02). Over 80% of traditional medicine users (46 subjects) reported using traditional medicine to treat HIV or HIV-related symptom. Several were currently using traditional medicine for this purpose, LQFOXGLQJ SDWLHQWV ZKR DFFHSWHG $57 DQG ZKR UHIXVHG ART. However, few participants indicated that their HIV treatment physician was aware of their traditional medicine use (2 patients who accepted ART and 4 patients who refused ART). $V VKRZQ LQ 7DEOH SDWLHQWV ZKR UHIXVHG $57 KDG VWURQJHU beliefs in the value of traditional medicine than patients who acFHSWHG $57 1RWDEO\ SDWLHQWV ZKR UHIXVHG $57 IHOW traditional medicine would manage symptoms of HIV compared WR SDWLHQWV ZKR DFFHSWHG $57 S 2QO\ RI subjects believed that traditional medicine could “cureâ€? HIV. ARTneg subjects had a marginally higher level of belief than ARTpos subjects that ART side effects were greater than traditional medicine side effects (p = 0.06). ARTpos subjects were more likely to report that TM has more side effects than ART (p = 0.02) than ARTneg subjects did. ,QĂ XHQFH RI OLSRG\VWURSK\ DQG WUDGLWLRQDO PHGLFLQH XVH on ART acceptance and adherence As seen in Table 6, over 90% of patients (36 subjects) who accepted ART reported that having or worrying about getting lipodystrophy had no impact on their adherence to ART. On the other hand, among patients who refused ART, 23% (12 subjects) indicated that worrying about getting lipodystrophy impacted their decision whether to start ART “a lotâ€? while 13% VXEMHFWV VDLG HLWKHU ´D IDLU DPRXQWÂľ RU ´D OLWWOHÂľ RI patients who accepted ART said that TM made them less likely WR DGKHUH WR $57 ZKLOH WKH UHPDLQLQJ VDLG LW KDG QR LPpact. Among patients who refused ART, 42% said traditional PHGLFLQH PDGH WKHP OHVV OLNHO\ WR VWDUW $57 ZKLOH VDLG it had no impact. No patients reported that traditional medicine use made them more likely to initiate or adhere to ART. JGH t Volume 1 t Issue 1 t Spring 2011

12

Discussion Morphological changes associated with fat redistribution in lipodystrophy affect cosmetic appearance and may stigmatize HIV-infected patients on ART with possible effects on both initial acceptance of and subsequent adherence to ART. We found that perceived features of lipodystrophy were surprisingly FRPPRQ LQ SDWLHQWV ZKR DFFHSWHG $57 DQG ZHUH LQGLcated by a large proportion of patients who refused ART (21%). Objective features of lipodystrophy, based on WHR criteria, ZHUH SUHVHQW LQ RI WKLV VWXG\¡V SDWLHQWV ZKR ZHUH RQ ART and 40-83% of patients who refused ART. We observed that these rates were higher than those reported by other studies done in Sub-Saharan Africa. For instance, amongst patients in Kigali, Rwanda who had been on ART for more than one year, the presence of lipodystrophy was 34% (Mutimura et al., 2007). In a South African sample of patients on ART, the prevaOHQFH RI OLSRG\VWURSK\ ZDV IRXQG WR EH 2VOHU HW DO These observed differences in reported prevalence of lipodystrophy abnormalities between our study and preexisting studies PD\ EH UHODWHG WR GLIIHUHQW PHWKRGV RI PHDVXULQJ DQG GHĂ€QLQJ lipodystrophy and duration on ART treatment. However, further research is needed to probe the cause of these differences. Lipodystrophy in HIV infection is usually associated with dyslipidemia (abnormalities of lipid and lipoprotein in the blood, which include cholesterol, triacyliglycerides, and lipoproteins). Since abnormalities of lipid and lipoprotein in the blood serve

Research Articles as markers that may predict the risk of cardiovascular disease, dyslipidemia raises concern for the possible future risk of car- References diovascular disease among HIV-infected people in Sub-Saharan $QGUHZ & +,9 /LSRG\VWURSK\ &DVH GHĂ€QLWLRQ 6WXG\ *URXS $Q REMHFAfrica. In our study, concern about the risk of lipodystrophy ap- WLYH FDVH GHĂ€QLWLRQ RI OLSRG\VWURSK\ LQ +,9 LQIHFWHG DGXOWV D FDVH FRQWURO VWXG\ peared to play a role in the decision of initiating ART in 36% of /DQFHW the patients (19 subjects) but did not to play a role in self-reported Dalton M, Cameroon A, Zimmet P, Shaw J, Jolley D, Dunstan D (‌) AusDiab FRPSOLDQFH ZLWK $57 $PRQJ VXEMHFWV HOLJLEOH IRU $57 ZKR S. (2003). Waist circumference, waist-to-hip ratio and body mass index and their refused to start ART, when asked about whether lipodystrophy correlation with cardiovascular disease risk factors in Australian adults. Journal of may have affected their willingness to initiate ART: 7 (13%) in- ,QWHUQDO 0HGLFLQH dicated that worries about lipodystrophy made them feel much less likely to initiate ART, while 12 (23%) indicated that worries Duran S, Saves M, Spire B, Cailleton V, Sobel C, Carrieri P (‌). the APROCO about lipodystrophy made them feel somewhat less likely to ini- study group. (2001). Failure to maintain adherence to highly active antiretroviral WKHUDS\ WKH UROH RI OLSRG\VWURSK\ $,'6 tiate ART. 34 (64%) patients indicated that it did not affect their ZLOOLQJQHVV WR LQLWLDWH $57 2XU Ă€QGLQJV FRQWUDVW ZLWK D VWXG\ Fisher A., Karasi J., Kibibi D., Omes C., Lambert C.,Uwayitu A. (‌) Arendt V. conducted in France, in which social and psychological stigma $QWLYLUDO HIĂ€FDF\ DQG DVVLVWDQFH LQ SDWLHQWV RQ DQWLUHWURYLUDO WKHUDS\ LQ .Lassociated with fat redistribution in lipodystrophy appeared to gali, Rwanda: the real- life situation in 2002. HIV Medicine, 7 (1), 64-66. play a role in ART adherence (Duran et al., 2001). In this particular study, 83 of the study’s 277 participants failed to adhere *LOO & - +DPHU ' + 6LPRQ - / 7KHD ' 0 6DELQ / / 1R URRP to ART twenty-four months after the initiation of the study. for complacency about adherence to antiretroviral therapy in Sub-Saharan Africa. AIDS, 19(12), 1243-1249. Participants who did not adhere to ART indicated a large number of self-reported lipodystrophy-related symptoms, such as +DQ 7 /HHU ( 6HLGHOO - /HDQ 0 :DLVW FLUFXPIHUHQFH DFWLRQ OHYHOV LQ WKH change in body shape, a bigger stomach, and breast enlargement. LGHQWLĂ€FDWLRQ RI FDUGLRYDVFXODU ULVN IDFWRUV SUHYDOHQFH VWXG\ LQ D UDQGRP VDPSOH The prevalence of traditional medicine use was slightly over %0- LQ ERWK $57SRV DQG $57QHJ JURXSV 7KH PDMRULW\ RI subjects (84%) used traditional medicine to treat HIV-related Hardon A., Akurut D., Comoro C., Ekezie C., Irunde H., Gerrits T., & Laing R. symptoms. In contrast to a study in which alternative thera- (2007). Hunger, waiting time, and transport cost: Time to confront challenges to $57 DGKHUHQFH LQ $IULFD $,'6 &DUH pies such as herbal remedies, prayers, meditations and massage therapy were typically used for treatment of ART re- Karcher H., Omondi A., Odera J., Kunz A. & Harms G. (2007). Risk factors for lated side effects (Duran et al., 2001), very few participants treatment denial and loss to follow-up in an antiretroviral treatment cohort in Kein our study used traditional medicine to treat ART related Q\D 7URSLFDO 0HGLFLQH DQG ,QWHUQDWLRQDO +HDOWK side effects (2%). Our study corroborated studies in the U.S. and Europe that suggested how physicians may be unaware Laurent C., Diakhate N., Fatou N., Awa T., Salif S., Awa F. (‌) Delaporte E. of subjects’ use of traditional medicine (Duran et al., 2001). (2002). The Senegalese government’s highly active antiretroviral therapy initiative: an 18-month follow-up study. AIDS 16(10), 1363-1370. Possible limitations in our study include the use of a small convenience sample, which limits our ability to generalize the Lohman T., Roche A. & Martorell R., (1988). Anthropometric standardization referstudy’s results. The fact that patients who accepted ART were ence manual. Champaign, IL: Human Kinetic Book. prioritized based on duration of ART treatment with the median ART treatment of 22 months increased the possibility of detect- Mutimura E., Stewart A., Rheeder P., & Crowther N. (2007). Metabolic function ing higher lipodystrophy rates than what has been reported in and prevalence of lipodystrophy in a population of HIV-Infected African subjects other cited literature on ART usage in Sub-Saharan Africa. The UHFHLYLQJ +LJKO\ $FWLYH $QWLUHWURYLUDO 7KHUDS\ -RXUQDO RI $,'6 high prevalence of lipodystrophy reported by patients who ad- Osler M., Stead D., Rebe K., Boulle A., & Meintjes G. (2007). Severe hyperlactatehere to ART raises concern of long-term comorbidity conditions PLD FRPSOLFDWLQJ $57 ZLWK VWDYXGLQH Ă€UVW OLQH WKHUDS\ LQ 6RXWK $IULFD LQFLGHQFH that are associated with lipodystrophy, such as diabetes mellitus risk factors, and outcomes. 14th CROI. and cardiovascular diseases. Further patient studies on lipid proĂ€OHV EORRG JOXFRVH DQG LQVXOLQ PD\ LPSURYH RXU DELOLW\ WR DFFX- Spacek L., Shihab H., Kamya M., Mwesigire D., Ronald A., Mayanja H. (‌) Quinn rately identify lipodystrophy and better assess its impact on over- T. (2006). Response to ART in HIV-infected patients attending a public, urban all health of HIV infected patients on ART in Tanzania. Finally, FOLQLF LQ .DPSDOD 8JDQGD &OLQLFDO ,QIHFWLRXV 'LVHDVHV Perceived and objective features of lipodystrophy were fairly Vuola J., Ristola M., Cole B., Jarviluoma A., Tvaroha S., Ronkko T., Rautio O., Arcommon in our sample of HIV-infected patients in Tanzania. beit R., & Reyn F. (2003). Immunogenicity of an inactivated mycobacterial vaccine Concern about lipodystrophy may be related to initial acceptance for prevention of HIV-associated tuberculosis: a randomized, controlled trial. AIDS, of ART in approximately a third of subjects but does not appear ² to have a discernable relationship to ART adherence. Finally, traditional medicine was used by a majority of our HIV-infected WHO Media Centre. “Traditional Medicine.â€? World Health Organization. Retrieved subjects but does not appear to be greatly related to ART ad- from www.who.int herence. However, it is important to be mindful that our study did not assess dose and effectiveness of traditional medicines that were used. It is possible that side effects noted by patients on ART may be related to concurrent traditional medicine use, but further research is needed to assess this. 13

JGH t Volume 1 t Issue 1 t Spring 2011

Field Notes

Diagnosing Dandy-Walker Complex by Computed Tomography: Experience in Uganda and Recommendations for Hospitals in Resource-Limited Settings Michael C Dewan1, Benjamin C Warf2 , John Mugamba3 1 Yale School of Medicine, New Haven, CT, USA, 2 Department of Neurosurgery, Harvard Medical School, Boston, MA, USA, 3 CURE Children’s Hospital of Uganda, Mbale, Uganda

&OLQLFLDQV LQ WKH GHYHORSLQJ ZRUOG ² SDUWLFXODUO\ WKRVH treating infants and patients with congenital neurological disHDVHV ² VKRXOG EH HTXLSSHG ZLWK WKH NQRZOHGJH WR GLDJQRVH Dandy-Walker complex (DWC) without relying on solely magnetic resonance imaging (MRI). In this paper, we will outline our recommendations for accurate diagnosis of DWC using computed tomography (CT) imaging on a sample of East African patients treated at our hospital in Uganda. Finally, we present a closer look at the social obstacles faced by this unique disease, and offer a framework for approaching these challenges.

What is the Dandy-Walker Complex? ´'DQG\ :DONHU PDOIRUPDWLRQÂľ ZDV Ă€UVW XVHG LQ WR GHVFULEH WKH FRPELQDWLRQ RI D F\VWLF GLODWLRQ RI WKH fourth ventricle and a hypoplastic cerebellar vermis (Benda, 6LQFH WKDW WLPH WKH HSRQ\P KDV XQGHUJRQH PRGLĂ€FDWLRQV Citing inherent challenges in the diagnosis of individual disease entities and inconsistencies within the literature base, Barkovich and colleagues introduced the term Dandy-Walker complex (DWC) in 1989 to represent a continuum of developmental anomalies of the posterior fossa (Barkovich, Kjos, Norman, & Edwards, 1989). The members of DWC each have varying degrees of fourth ventricular cystic dilation, vermian dysgenesis, and posterior fossa enlargement, as described in the sections that follow. In increasing severity, the DWC includes mega cisterna magna (MCM), Blake’s pouch cyst (BPC), Dandy-Walker variant (DWV), and Dandy-Walker malformation (DWM). DWC is a relatively common congenital malformation occurring in at OHDVW LQ OLYHERUQ LQIDQWV LQ WKH 8QLWHG 6WDWHV 3DULVL Dobyns, 2003). Though not fully elucidated, DWC likely results from a defect in the embryologic development of loose connective tissue of the pia mater within the fourth ventricle, creating a dorsal outpouching and variable vermian hypoplasia. The result is often an obstructive form of hydrocephalus secondary to LQDGHTXDWH IRXUWK YHQWULFOH FHUHEURVSLQDO Ă XLG &6) GUDLQDJH

How Does DWC Present? In the developing world, DWC usually comes to medical attention following a protracted period of hydrocephalus that eventually leads to overt macrocephaly. The majority of our patients in Uganda had a head circumference exceeding the WK SHUFHQWLOH DW URXJKO\ PRQWKV RI OLIH 0DQ\ SDWLHQWV JGH t Volume 1 t Issue 1 t Spring 2011

were also present with signs and symptoms of chronic increased intracranial pressure, which include irritability, vomiting, bulging fontanelle, gaze palsy, and nystagmus. Though structural involvePHQW RI WKH FHUHEHOOXP LQ SDUW GHĂ€QHV ':& FHUHEHOODU G\Vfunction in infancy is uncommon (Kumar & Burton, 2008).

Imaging Techniques and Diagnosis in Underdeveloped Countries Autopsy analysis aside, imaging is requisite for diagnosis of ':& :HVWHUQ PHGLFLQH KDV WKH EHQHÀW RI URXWLQH SUHQDtal sonographic evaluation of fetal well-being, and therefore, the majority of patients receive neurosurgical consultation immediately after birth. Patients receive MRI evaluation to conÀUP WKH SUHQDWDO GLDJQRVLV RI ':& DQG WR LGHQWLI\ DVVRFLDWHG central nervous system (CNS) anomalies, which are present in up to 71% of DWM patients (Has et al., 2004). The superiority of MRI over computed tomography (CT) scans in evaluating the posterior fossa structures means that few, if any, DWC patients in the U.S. will receive a CT scan. MRI has the advantage RI GHÀQLQJ LQ GHWDLO WKH SUHFLVH QDWXUH RI &16 DEQRUPDOLWLHV Such luxuries are distant considerations for many patients in underdeveloped countries. The next best option for these patients is a CT scan. Though commonplace even among rural hospitals in the United States, a CT scanner can nonetheless be a rare commodity outside the developed world. Take Uganda as an example: as of early 2011, there were only 3 CT scanners outside Uganda’s capital city. Poor road networks, risLQJ IXHO SULFHV DQG OLPLWHG ÀQDQFHV FROOHFWLYHO\ FUHDWH D FKDOlenging dilemma for patients who live far from a CT scanner. In the case of MRI, many third world countries like Uganda don’t even have a MRI device. In countries that do have MRI devices, MRI use is often cost-prohibitive. Whereas a single CT scan can cost as little as $60 USD, the cost of MRI, on average, exceeds 86' VXFK DQ H[SHQVH LV DUJXDEO\ H[FHVVLYH IRU SRYHUWL]HG populations. While modern medicine may encourage the use of MRI for accurate diagnosis of DWC, there needs to be an alternative for the developing world;͞ a CT scan is a more reasonDEOH FRVW HIÀFLHQW RSWLRQ :LWK DGHTXDWH VXSSRUW PRVW SDWLHQWV can receive a CT scan. Based on our experiences working with patients at the Cure Children’s Hospital of Uganda (CCHU), even patients from the most desperate of socioeconomic and political environments have been able to obtain CT scans. 14

Field Notes Our Experience and Recommendations

of DWC. The patient, and the CT images, should then be sent to a physician who has the ability to treat the pathology. Before an intervention can be performed on such patients, an evaluation of clinical and radiographic data must always be performed by the physician who intends to intervene surgically. From a general physician’s perspective, absolute diagnostic certainty is not necessary. A well-informed suspicion of WKH SUHVHQFH RI ':& EDVHG XSRQ &7 ÀQGLQJV ZRXOG VXIÀFH ,Q RXU H[SHULHQFH HDFK RI WKH SDWLHQWV ZHUH SUHVHQW ZLWK macrocephaly with or without signs of increased intracranial pressure. Following diagnostic imaging with CT, paWLHQWV ZHUH FODVVLÀHG DV ':0 ':9 RU 0&0 DQG WKH\ were surgically managed for resolution of hydrocephalus. Endoscopic third ventriculostomy and/or ventriculoperitoneal shunting achieved resolution of signs and symptoms of progressive hydrocephalus in the vast majority of patients.

In 2004, the United States Agency for International Development (USAID) donated a CT scanner to Cure ChilGUHQ¡V +RVSLWDO RI 8JDQGD &&+8 7KLV DVVHW VLJQLĂ€FDQWO\ improved the diagnostic capabilities of a hospital treating diseases that demand an advanced imaging modality. Because of this acquisition, clinicians at the hospital are now able to treat dozens of diseases that previously went undiagnosed. Dandy-Walker complex is one such disease. Between 2004 DQG SDWLHQWV ZHUH GLDJQRVHG ZLWK DQG WUHDWHG IRU ':& at CCHU. These patients were selected from a population of LGHQWLĂ€HG DV KDYLQJ F\VW OLNH SRVWHULRU IRVVD SDWKRORJ\ RU hindbrain dysplasia. It was from this larger population that the diagnostic criteria, outlined below, were applied to extract those with DWC. The following are the three disease entities along the DWC spectrum that we feel can accurately be diagnosed using CT imaging. Our recommendations for accurate diagnosis combine features of accepted criteria outlined elsewhere (Sasaki-Adams et al., 2008;Íž Strand, Barnes, Poussaint, Estroff, & Burrows, 1993).

Special Considerations for DWC Patients Proper management of these unique patients requires commitment from a large and diverse group of healthcare providers including pediatricians, radiographic technicians, nurses, anesthetists, neurosurgeons, and laboratory personQHO ,Q DQ HQYLURQPHQW ZKHUH Ă€QDQFLDO DQG KXPDQ UHVRXUFes are limited, often a single individual may occupy many of these roles. Furthermore, while the medical care these patients receive while hospitalized is of utmost importance, the social environment surrounding the patient and its implications for a successful recovery cannot be overstated. Hydrocephalus, whether associated with DWC or another cause, carries a powerful stigma in many cultures;Íž it is a stigma that poses great barriers to patient recovery and societal assimilation. In Uganda, for example, a mother might perceive D FKLOG ZLWK PDFURFHSKDO\ DV DQ ÂśDOLHQ ¡ ÂśGHPRQ ¡ RU WKH ÂśGHYLO¡ himself. Some fathers believe that such children are the conVHTXHQFH RI LQĂ€GHOLW\ RQ WKH SDUW RI WKH PRWKHU ,Q IDFW WKH fathers of the majority of macrocephalic children treated at CCHU have abandoned their spouse. Communities will often reject the mother and child for fear that either one carries a negative contagion that could disrupt society. Unfortunately, some mothers will even kill their children in an effort to escape the burden or rid her community of a presumed evil being. It is for these reasons that the hospital maintains an active and well-supported social outreach team charged with educating patient caregivers about their child’s disease, and offering VSLULWXDO VRFLDO YRFDWLRQDO DQG RFFDVLRQDOO\ Ă€QDQFLDO VXSSRUW It became apparent early in the establishment of CCHU that surgical outcomes correspond with the degree of social support surrounding a patient and his or her caregiver(s). During the hospital admission process, trained social workers evaluate each caretaker’s social status, including his or her home environment, level of education, occupation, spiritual needs, and community support. During this evaluation, caretakers often paint a picture of the hardships suffered during the life of their child. A plan is then made for each patient, and social workers, religious staff, and medical personnel work in concert to address these challenges and develop solutions. At CCHU, a large effort is made to educate patient care takers about the etiology of their child’s condition. Through words, pictures, and videos, the medical staff offers a basic ex-

Dandy-Walker malformation (DWM) 1. Complete absence of the cerebellar vermis, or severe unequivocal hypoplasia of the inferior vermis 2. A posterior fossa CSF collection in direct communication with the fourth ventricle 3. An unequivocally enlarged posterior fossa Dandy-Walker variant (DWV) 1. Inferior vermis hypoplasia 2. Posterior fossa CSF collection in direct communication with the fourth ventricle 3. No obvious enlargement of the posterior fossa Mega cisterna magna (MCM) 1. Enlarged cisterna magna 2. Large posterior fossa volume 3. Formed cerebellar vermis

'DQG\ :DONHU 0DOIRUPDWLRQ $[LDO &7 LPDJHV UHYHDO VLJQLĂ€FDQW SRVWHrior fossa enlargement, absence of the cerebellar vermis and dilation of the third, fourth, and frontal and temporal horns of the lateral ventricles.

We feel that the above characteristics can all be accurately LGHQWLÀHG RU UHIXWHG E\ D[LDO &7 LPDJLQJ DQG GR QRW UHTXLUH MRI. The features above can be recognized and documented by a physician with a basic grasp of neuroimaging. It goes without saying, however, that any clinician responsible for readLQJ VXFK LPDJHV VKRXOG KDYH D ÀUP XQGHUVWDQGLQJ RI QHXURanatomy. These points are not meant to suggest that the diagnosis of and distinction between individual DWC entities are simple tasks. While trained neurosurgeons at CCHU are the ones who read CT scans, a general physician can also obtain such scans and identify features that suggest a diagnosis 15

JGH t Volume 1 t Issue 1 t Spring 2011

Field Notes planation for the biological cause of their child’s disease. This knowledge is meant both to eliminate the caretaker’s fear that their child is a form of punishment and to empower him or her with knowledge to educate community members at home. Religious leaders employed by the hospital are available to counsel caregivers and their children throughout their hospital stay. Families are free to interact as much or as little as they choose with the religious staff. Spiritual counseling is available to guests on an individual basis, and prayer and song sessions are regularly held for community worship. CCHU strives to accommodate patients from every geographic region and tribe of Uganda and beyond. With over 80 different tribes and scores of distinct languages and dialects, CCHU employs staff that speak dozens of languages to ensure that patient caretakers can tell their child’s story in their native tongue. The hospital leadership believes that of all the obstacles faced by these patients, a language barrier is one that can be eliminated from the outset. Finally, CCHU empowers patient caretakers, and women in SDUWLFXODU E\ HTXLSSLQJ WKHP ZLWK ÂśLQFRPH JHQHUDWLQJ¡ DFWLYLties. A section of the hospital is charged with training women to make beaded necklaces from scrap paper, and selling their work in local markets. Such activities are designed to provide patients with a small source of income and to reduce their dependence on potentially unreliable partners or family members. This multifaceted approach to caregiving makes CCHU unique among Ugandan hospitals. It is only when patient caretakers are empowered with this knowledge and skill-set that these patients have a fair chance at living meaningful lives. $FFXUDWH GLDJQRVLV RI ':& LV WKH Ă€UVW VWHS LQ WUHDWLQJ DWC-associated hydrocephalus. Failure to do so may result in progressive hydrocephalus, cerebral cortical compression and atrophy, irreversible macrocephaly, herniation, and death. Recognition of signs and symptoms of hydrocephalus should prompt

QHXURLPDJLQJ WR GHĂ€QH WKH HWLRORJ\ RI K\GURFHSKDOXV ':& or otherwise. Using the criteria reported in this manuscript, we believe three entities along the DWC continuum can be accurately diagnosed using CT scanning instead of MRI. Patients can then be offered a variety of surgical treatment options with the goal of resolving hydrocephalus.

References Barkovich, A. J., Kjos, B. O., Norman, D., & Edwards, M. S. (1989). Revised clasVLĂ€FDWLRQ RI SRVWHULRU IRVVD F\VWV DQG F\VWOLNH PDOIRUPDWLRQV EDVHG RQ WKH UHVXOWV RI PXOWLSODQDU 05 LPDJLQJ $PHULFDQ -RXUQDO RI 5RHQWJHQRORJ\ %HQGD & 7KH 'DQG\ :DONHU V\QGURPH RU WKH VR FDOOHG DWUHVLD RI WKH IRUDmen Magendie. Journal of Neuropathology and Experimental Neurology, 13(1), 14-29. +DV 5 (UPLĂť + < NVHO $ ,EUDKLPRøOX / <LOGLULP $ 6H]HU + ' %DĂťDUDQ 6 'DQG\ :DONHU PDOIRUPDWLRQ D UHYLHZ RI FDVHV GLDJQRVHG E\ prenatal sonography. Fetal Diagnosis and Therapy, 19(4), 342-347. Kumar, P., & Burton, B. (2008). Congenital Malformations: Evidence-Based Evaluation and Management. New York: McGraw-Hill. Parisi, M. A., & Dobyns, W. B. (2003). Human malformations of the midbrain and KLQGEUDLQ UHYLHZ DQG SURSRVHG FODVVLĂ€FDWLRQ VFKHPH 0ROHFXODU *HQHWLFV DQG 0HWDEROLVP Sasaki-Adams, D., Elbabaa, S. K., Jewells, V., Carter, L., Campbell, J. W., & Ritter, A. M. (2008). The Dandy-Walker variant: a case series of 24 pediatric patients and evaluation of associated anomalies, incidence of hydrocephalus, and developmental outcomes. Journal of Neurosurgery: Pediatrics, 2(3), 194-199. Strand, R. D., Barnes, P. D., Poussaint, T. Y., Estroff, J. A., & Burrows, P. E. (1993). &\VWLF UHWURFHUHEHOODU PDOIRUPDWLRQV XQLĂ€FDWLRQ RI WKH 'DQG\ :DONHU FRPSOH[ DQG WKH %ODNH¡V SRXFK F\VW 3HGLDWULF 5DGLRORJ\

Language of the Heart: A Student’s Perspective on Congenital Heart Defects and Volunteering Alina Yang Princeton University, Princeton, NJ, USA Lan Xiao Hua is a 13 year old girl from Gansu, China. She had Ventricular Septal Defect, a hole in her heart’s right ventricle. Doctors said she would be able to live to approximately 20 years of age. Xiao Hua’s family knew about her congenital heart disease (CHD) since she was 7 years old, but with the humble living they made coaxing wheat from the dry, parched land of Gansu Province, the necessary surgery expenses would have required 10 years’ worth of their income. Xiao Hua’s condition is not untreatable. Rather, CHD requires what is considered one of the simpler cardiac surgeries. Had Xiao Hua been operated on earlier, the chances of a successful surgery would have been almost 99%. After the surgery, she would have been completely normal, with JGH t Volume 1 t Issue 1 t Spring 2011

few lingering symptoms. Instead, without the necessary surgery for CHD, Xiao Hua was easily exhausted by the simplest of everyday activities, such as walking. Her lips were tinted blue whenever she did any work. Even breathing was painful for her. Xiao Hua was more susceptible to transmittable diseases and caught colds frequently, a symptom of poor blood circulation. She was also shorter than other 13-year-old girls because her faulty heart contributed to stunted growth and development. Xiao Hua desperately needed the heart surgery, but she didn’t have the resources needed to obtain treatment. Lan Xiao Hua’s plight is not unusual. Congenital heart defects (CHD) are a leading cause of child mortality both worldwide and in the U.S. According to the American 16

Field Notes the home to Lan Xiao Hua, which has an annual mean precipitation of 420 mm (2006). A local saying in Gansu goes: the only time the people can shower is “at birth, marriage, and at deathâ€? because of the scarcity of water. Because water can sell at roughly 80 RMB per barrel, families struggle to provide proper nourishment for pregnant women and their growing fetuses. While it cannot be concluded that lack of precipitation is directly linked to CHD, it does, however, affect the diets and nutrition of Gansu families. Scientists suggest that some types of congenital heart defects can be related to an abnormality of an infant’s chroPRVRPHV WR RI &+' FDVHV VLQJOH JHQH GHIHFWV WR RI &+' FDVHV RU ´HQYLURQPHQWDO IDFWRUVÂľ RI &+' FDVHV %XW LQ WR RI &+' FDVHV WKHUH LV QR LGHQWLĂ€DEOH FDXVDO DJHQW RI &+' ,Q RQH VWXG\ IRU example, maternal exposure to poisonous chemicals, negative life events, and antibiotic medicines during pregnancy were key environmental risk factors that contributed to CHD. The researchers also suggested that the frequent conWhat Are Congenital Heart Defects? sumption of meat, eggs, beans and milk during pregnancy Congenital heart defects are structural problems with ZDV D SURWHFWLYH IDFWRU IRU &+' *DR =KDR /L the heart that are present at birth. Defects range in severity from simple problems, such as “holesâ€? between chambers of the heart, to very severe malformations, such as complete absence of one or more chambers or valves. In severe defects, CHD can lead to heart failure, a condition in which the heart is unable to pump blood throughout the body. Other common results include lifethreatening brain infections and the hemorrhaging of the heart. Heart Association, CHD is one of the most common birth defects in the U.S. (American Heart Association, 2011). Nearly two times more American children die from congenital heart disease annually than those who die from all other forms of childhood cancers combined (Children’s Heart Foundation, 2009). Whereas approximately 1% of newborns suffer from congenital heart defects in the United States, that percentage is roughly 6% in the province of Gansu, China (Gao & <XH 0DQ\ IDPLOLHV LQ LQGXVWULDOL]HG FRXQWULHV DUH DEOH to afford reconstructive surgery for CHD shortly after birth. But in China’s Gansu Province, the cost of an approximately 30,000 RMB (or approximately $4000) operation is unattainable for millions of poverty-stricken Gansu residents. As a volunteer of Angel Heart International, a nonprofit organization dedicated to helping children with CHD in China and other developing countries, I had the opportunity WR PHHW ZLWK *DQVX IDPLOLHV ZKR PDGH QR PRUH WKDQ 50% SHU \HDU /DQ ;LDR +XD¡V IDPLO\ ZDV RQH RI WKHP

Today, the outlook for a child with a congenital heart defect is better than ever.

Causes and Treatment of CHD Researchers do not yet fully understand why CHD develop. Many scientists and philanthropic foundations highlight the role of heredity in some heart defects (American Heart Association, 2011;Íž Bruneau 2008;Íž Gelb & Weismann 2007;Íž Pierpont et al. 2007). For example, an individual who has a congenital heart defect may be especially likely to have a child with a similar condition. The American Heart Association advises that pregnant women should avoid alcohol, drugs, and environmental toxins to decrease the chance that their newborns would develop congenital malformations. (American Heart Association, 2011). Unfortunately, for the majority of CHD cases, the precise cause of CHD remains unknown. Treatment ranges from procedures that use catheters to repair the defect to open-heart surgery, and, in the severest cases, heart transplants are an option.

What Is Overlooked? While possible causal agents of CHD include drugs, chemicals, and infections during a fetus’ development in the womb, or genetic and chromosomal defects apparent shortly after conception, mainstream resources for medical knowledge overlook another noteworthy possibility: socio-economic correlates. It may not be a coincidence that Gansu, China, which has a CHD incidence rate that is six times China’s average, also has a poverty rate three times China’s average poverty rate. Millions of rural residents in Gansu work in subsistence farming and animal husbandry, earning an average annual per capita income that’s only 63% of China’s average income in 2000 (Adams et al, 2008). Extreme drought is common in Dingxi, Gansu, 17

The future Today, the outlook for a child with a congenital heart defect is better than ever. Advances in testing and treatment give most children born with heart defects the chance to grow into adulthood and the ability to live active, productive lives. However, it is also true that Lan Xiao Hua’s condition was most likely not due to genetic disorder, or irresponsible consumption of drugs and alcohol on the part of her mother. Even though she was JLYHQ WKH EHVW KHU IDPLO\ FRXOG RIIHU ² PLON DQG EUHDG ² VKH DQG KHU PRWKHU OLNHO\ VXIIHUHG IURP PDOQXWULWLRQ Lan Xiao Hua’s chances of a normal, adult life are much greater today than they were a decade ago, now that she has been treated for CHD. However, until recently, she was just one of many children who were not receiving treatment for CHD. The World Health Organization estimates that the number of children with CHD waiting for treatment is between 2 million and 6 million, to which 800,000 WR PLOOLRQ QHZ FDVHV DUH DGGHG HDFK \HDU .LUE\ Limited data exists that describes the relationship between socioeconomic factors and CHD susceptibility. (Bartlett et al, 2004). Studies published on all the congenital anomalies (CAs) have either indicated no clear socioeconomic or psychosocial correlates of CHD or a higher prevalence of CAs among children born to lower social class mothers. (Knox et al, 1991;Íž Olsen et al, 2003;Íž Stone et al, 1989). More research is urgently needed to examine psychosocial and socioeconomic correlates of CHD incidence. JGH t Volume 1 t Issue 1 t Spring 2011

Field Notes

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No single global health care delivery model can be generalized to the hundreds of thousands of medical causes and charities that currently exist. Many organizations, in fact, successfully work together with consultants and corporate phiODQWKURSLVWV WR GHWHUPLQH FRVW HIĂ€FLHQW ZD\V RI LPSDFWLQJ D FRPPXQLW\ 7KLV LV ZKHUH ZH VHH WHUPV VXFK DV ´HIĂ€FLHQF\ Âľ “business-model, â€? and “results-based philanthropyâ€? and we are made aware of how “xâ€? many of people were helped by D ´\Âľ DPRXQW LQ GRQDWLRQV 7KH QRQ SURĂ€W RUJDQL]DWLRQDO culture largely dedicated to assisting the greatest number of people, with the least amount of money and resources. Yet an “outcomes-basedâ€? approach to analyzing medical SKLODQWKURSLHV LV GHFHSWLYHO\ VLPSOH HYHQ DV PRUH QRQSURĂ€WV DUH GUDZQ WR D ´EXVLQHVV PRGHOÂľ LQ EULQJLQJ HIĂ€FLHQF\ WR FKDUity and maximizing the number of patients reached using the least amount of funds. For example, a noteworthy association RI QRQSURĂ€WV DQG LQGLYLGXDOV FDOOHG /LWWOH 5HG 6FDUI VHHNV WR reach every child suffering from CHD in Gansu. However, in the case of Angel Heart International, for instance, success LV QRW GHĂ€QHG E\ WKH QXPEHU RI FKLOGUHQ FXUHG RI FRQJHQLWDO heart defects. Instead, we aim to build a strong communication and education platform that is focused on providing family visits, effective physician-patient communication, and educational seminars for CHD patients and their family members. How would we measure “performance outputâ€? in the case of Lan Xiao Hua? Lan Xiao Hua’s sister wrote to Angel Heart International expressing that the pivotal moment in her life was not her sister’s surgery but the many times volunteers “would always drop by to check up on my sister and the rest of [them], each time loaded with goodies and treats.â€? How do we measure number-based results without taking into account the emotional support volunteers can bring before, during, and after the CHD surgery process? These are the volunteers who make day-long trips to make a single house call and are at the patient’s bedside every step of the way. How do we measure the phone calls and road-trips, three years later, that are still made to visit and stay in contact with the families of every child who has worked with Angel Heart International? We shouldn’t shy away from questions of global health delivery in underdeveloped communities. For some, it will be about the numbers, the number cured of a life-threatening LOOQHVV DQG DERXW PDQDJLQJ GHPDQG IROORZLQJ HIĂ€FLHQF\ UHducing costs, and increasing viability. Fundraising is an effective and popular approach for children, college students, and adults to become involved in a global health issue. Certainly, numbers demonstrate whether charities are accountable and Ă€QDQFLDOO\ KHDOWK\ RUJDQL]DWLRQV 7KHVH ODUJH FKDULWLHV KDYH DGmirable and impressive goals;Íž their inspiring human success VWRULHV WHVWLI\ WR WKH HIĂ€FDF\ RI WKH UHVXOWV EDVHG DSSURDFK Little Red Scarf, for example, has sponsored more than 400 separate surgical operations since 2007. Organizations such as Little Red Scarf seek to provide medical care to various communities, numbering in hundreds and thousands treated per year. Some of the most ambitious organizations even seek to eliminate entire medical illnesses from certain communities. Since its inception, Angel Heart International has exSDQGHG VHUYLFHV WR VFKHGXOH PHGLFDO DLG IRU D PHUH FKLOdren in a year. Yet, we could never capture in numbers the JGH t Volume 1 t Issue 1 t Spring 2011

MR\ WKDW WKHVH FKLOGUHQ UHFHLYH ZKHQ WKH\ DUH ÀQDOO\ DEOH WR DWWHQG VFKRRO DJDLQ UHFHLYH WKHLU ÀUVW SHQFLO ER[ DQG PDNH IULHQGV ZLWK our volunteers. Both models, result-based care (like Little Red Scarf) and the more personal, process-based care style (in the case of Angel Heart International) are necessary. They are necessary not only for ensuring access to essential medical services, but also to allow for broader systems of social welfare capable of addressing the social determinants of health. Because every disease has a biological and more human-rooted story, solutions to each disease need to be rooted in the biomedical and social, humanistic sphere.

References Adams, J., & Hannum, E. (2008). Girls in Gansu, China: Expectations and aspirations for secondary schooling. Gansu Survey of Children and Families Papers. American Heart Association. (2011). Congenital Heart Defects. Retrieved from: www.heart.org Bruneau, B. (2008). The developmental genetics of congenital heart disease. Nature, Children’s Heart Foundation. (2009). Fact Sheets. Retrieved from http://www. childrensheartfoundation.org/about-chf/fact-sheets. *DR % <XH ) 7KH (SLGHPLRORJLFDO ,QYHVWLJDWLRQ RI &RQJHQLWDO +HDUW 'LVHDVH LQ *DQVX 3URYLQFH &KLQHVH &LUFXODWLRQ -RXUQDO *DR / =KDR = /L ' &DVH FRQWURO VWXG\ RQ HQYLURQPHQWDO ULVN IDFWRUV of congenital heart disease, China Public Health, 21(2), 161-162. Kirby, T. (2010). ESC tackles child congenital heart disease in poor countries. LanFHW ² Pierpont, M., Basson, C., Benson, D., Gelb, B., Giglia, T., Goldmuntz, E, (...)Webb, C. (2007).Genetic basis for congenital heart defects: current knowledge. Circulation, Weismann, C. G. & Gelb, B. D. (2007). The genetics of congenital heart disease: a review of recent developments. Current Opinion in Cardiology, 22(3), 200-206.

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Field Notes

,PPXQL]DWLRQ $FWLYLWLHV LQ 3RVW &RQà LFW 6HWWLQJV Field Notes from Southern Sudan Thuwein Yusuf Makamba Tulane University School of Public Health and Tropical Medicine, New Orleans, LA, USA Introduction In July 2011, The Republic of South Sudan will become the newest country in Africa. In January 2011, a referendum vote for Southern Sudanese independence passed, with 98.8% of the electorate preferring secession from the Islamist North Sudan 665& 7KH UHIHUHQGXP YRWH ZDV WKH ÀQDO FRPSRQHQW RI WKH &RPSUHKHQVLYH 3HDFH $JUHHPHQW ZKLFK ZDV VLJQHG LQ to end the Sudanese Civil War, the longest civil war in Africa. 7KLV FLYLO ZDU DQG FODLPHG WKH OLYHV RI two million people and displaced four million Sudanese (Cometto, Fritsche, & Sondorp, 2010). The clashes between the northern-based Islamist government and the southern-based rebel group, the Sudan People’s Liberation Army, were prompted by YDULRXV UHDVRQV LQFOXGLQJ FRQà LFWV RYHU UHOLJLRQ UHVRXUFHV JRYernance, and self-determination (ICG, 2002). When the ComSUHKHQVLYH 3HDFH $JUHHPHQW ZDV VLJQHG LQ LW EURXJKW DQ HQG WR WKH FRQà LFW 8QIRUWXQDWHO\ 6RXWKHUQ 6XGDQ ZDV OHIW ZLWK no health infrastructure and an inadequate healthcare system. ,Q RQO\ RI WKH 6RXWKHUQ 6XGDQHVH SRSXODWLRQ had access to healthcare. The health situation in this country remains grave: the maternal mortality rate is 2,030 per 100,000 ELUWKV VNLOOHG KHDOWKFDUH SHUVRQQHO DWWHQG RQO\ RI SUHJQDQF\ deliveries, and there is only one doctor per 100,000 people (Cometto et al., 2010). Other socioeconomic indicators are grim;͞ only 16% of females can read and write and schools have an average of 129 students per classroom (SSCCSE, 2010). About 80% of the population does not have access to any toilet facility (SSCCSE, 2010). The recovery of the health sector is impeded by lack RI VHFXULW\ ODFN RI HOHFWULFLW\ VHFXODU FRQà LFWV SRRU EDVLF LQIUDstructures, and weak leadership. The combination of these factors PDNHV UHFRQVWUXFWLRQ PRUH GLIÀFXOW WKDQ SUHYLRXVO\ HQYLVLRQHG Health sector recovery in Southern Sudan has been coordinated by World Health Organization and The World Bank. These organizations have been involved with technical assistance to the Government of Southern Sudan, providing resource mobilization and policy formulation (Cometto et al., 2010). In this environment, the main implementers of healthcare activities are Civil Society Organizations (CSO), which include Non-Governmental Organizations (NGOs), Faith Based Organizations (FBOs), and Community Based Organizations (CBOs). Most NGOs run programs in two or three counties, each program having a budget of $1-2 million per year (Cometto et al., 2010). The NGOs work under Southern Sudan governmental leadership to accomplish their goals while building the Ministry of Health’s capacity in the healthcare sector. There are at least 76 CSOs involved with healthcare delivery in Southern Sudan (Cometto et al., 2010);͞ they face a P\ULDG RI FKDOOHQJHV ,QWHU HWKQLF FRQà LFWV DQG URJXH JRYHUQ 19

ment soldiers continue to foster an insecure environment, which contributes to the slow pace of recovery. Poor infrastructures and lack of electricity escalate the operational costs of providing health care, while an inadequate supply of human resources for health makes it impossible to expand any health care activities.

The Case for Strong Immunization Programs The advent of childhood vaccinations revolutionized the ÀHOG RI SXEOLF KHDOWK DQG FRQWLQXHV WR EH RQH RI WKH PRVW FRVW effective public health interventions. Vaccinations led to the eradication of smallpox in 1979, and scientists are currently on the cusp of using vaccinations to eradicate poliomyelitis (Modlin, 2010). Recent estimates provide an illustration of the effective nature of vaccines: immunizations averted up to 61% of measles deaths, 69% of tetanus deaths, 78% of pertussis deaths, 94% of diphtheria deaths, and 98% of polio deaths that would have occurred in the absence of vaccinations (Jamison, Breman, & Measham, 2006). These estimates are derived from mathematical models that focus on susceptible proportions of the population, infectivity rates of disease, and case fatality rates. In 2003, it was estimated that immunizations prevented two million childhood deaths from measles, neonatal tetanus, and pertussis (Tangermann, Nohynek, Eggers, 2007). However, there is a wide disparity in access to vaccines between industrialized and developing countries, as evidenced by the non-uniform global GHFOLQH RI PRUWDOLW\ UDWHV LQ FKLOGUHQ XQGHU ÀYH ,Q .HQ\D WKH LQFUHDVH LQ FKLOG PRUWDOLW\ ZDV SHU \HDU DPRQJ WKRVH UHsiding in rural areas and among those who lack a formal education (Houweling, Kunst, Moser, & Mackenbach, 2006). The VLWXDWLRQ LV ZRUVH LQ SRVW FRQà LFW VHWWLQJV VXFK DV 6RXWKHUQ Sudan, where immunization services are nearly nonexistent. Southern Sudan has one of the highest child mortality rates LQ WKH ZRUOG DW GHDWKV SHU OLYH ELUWKV &RPHWWR HW DO 2010). Vaccine-preventable diseases like measles and neonatal tetanus account for the majority of childhood deaths and for the high childhood disease burden in Africa (Clements, Gasaria, & Nshimirimana, 2008). However, Southern Sudan only KDV FRYHUDJH RI PHDVOHV YDFFLQHV DQG D GLVPDO WRWDO immunization coverage. In August of 2010, Kajo Keji County in the Eastern Equatorial State of South Sudan had immunization coverage of 11% (South Sudan Ministry of Health, ,Q WKHVH SRVW FRQà LFWV VHWWLQJV ZKHUH KHDOWK V\VWHPV have been destroyed by decades of war, it is critical to have strong immunization programs because these health systems cannot manage large outbreaks of measles or polio. In Southern Sudan, an unvaccinated child infected by a disease that a vaccine may have otherwise prevented will most likely die due to lack of healthcare services. With the current condiJGH t Volume 1 t Issue 1 t Spring 2011

Field Notes tions, the best method to guarantee the survival of post-conà LFW FKLOGUHQ LV WR LQYHVW LQ VWURQJHU LPPXQL]DWLRQ SURJUDPV I spent six months in Southern Sudan’s Kajo Keji and Magwi Counties as a volunteer Health Programs Quality Intern for the American Refugee Commission International (ARC). I worked on Primary Healthcare and HIV/AIDS programs. ARC decided to support a three month acceleration plan that would boost immunization coverage for Kajo Keji County. I assumed the leadership role for this exercise. In collaboration with the County Health Department (CHD), an acceleration plan was sketched to reach every village throughout the entire Kajo Keji County at least once every month. The Kajo Keji County Health Department lacked the FDSDFLW\ DGPLQLVWUDWLYHO\ DQG ÀQDQFLDOO\ WR VHW XS D FRQVLVWHQW immunization program. The Southern Sudan government had been incapable of providing monetary support for the CHD, leading to a delay in the payment of health worker salaries, which resulted in a health workers strike. To that end, basic healthcare delivery came to a complete halt and NGOs had to intervene. With the monetary resources from ARC, the acceleration immunization campaign was designed with the objective of increasing immunization coverage in Kajo Keji County. The campaign was designed to take a community ownership approach, such that the vaccinators and supervisors were recruited from their own villages under the leadership of the County Health Department.

health. Most of these workers had little background in immunization and few had completed nine months of training as Community Health Workers. With this crop of vaccinators, we were afraid that the quality of our immunization program could be compromised. It was important to set up a one day workshop on fundamentals of immunization to educate the selected vaccinators. The workshop covered the tallying process, administration of antigens, community mobilization, contraindications, and surveillance of adverse reactions. This workshop was imperative because it transferred knowledge and skills about immunization services and processes to the vaccinators. The vaccinators then had to demonstrate back to the trainers how to safely adminisWHU LQMHFWLRQV DQG KRZ WR ÀOO LPPXQL]DWLRQ UHFRUG GDWD VKHHWV In order to maintain the high quality of the program, we GHYHORSHG WZR OD\HUV RI VXSHUYLVLRQ :H UHFUXLWHG RQ ÀHOG VXpervisors who were responsible for overseeing the vaccinators throughout the county. We also hired central supervisors from CHD, ARC, and SUHA. Five central supervisors, equipped with motorcycles and motor-vehicles, conducted support supervision, ZKLFK HQWDLOHG VXSHUYLVLQJ WKH ÀHOG WHDPV DQG FRPSOHPHQWLQJ them with resources and encouragements. Our support superviVRUV UHLQIRUFHG WKH ÀHOG WHDPV ZLWK YDFFLQHV LFHSDFNV V\ULQJHV and other vital supplies. Support supervision was the most important component of this program. It enabled us to improve the vaccinators’ production, while also making sure that vaccines were administered safely and that the data was recorded accurately. Goals and Objectives Social mobilization and community awareness of this The objective for this exercise was to conduct an exercise were two other components necessary for the success acceleration immunization campaign in 2010 in Kajo Keji of this campaign. There is evidence suggestive of 12% to 20% County during the months of August, September, and No- increases in the absolute level of immunization coverage and YHPEHU WKDW ZRXOG ÀW ZLWKLQ WKH EXGJHWDU\ OLPLW RI 33% to 100% increases in relative coverage compared to baseUSD. The goal was to double the county’s immunization lines when communication is included as a key component of coverage of 13%. The targeted population was children who immunization strengthening (Waisbord, Shimp, Ogden, Morry, were under one year of age. The antigens administered were Ogden, 2010). Radio broadcasts are widely listened to in Kajo Oral Polio Vaccine (OPV), Measles, Bacille Calmette-GuÊrin .HML &RXQW\ DQG ZHUH LGHQWLÀHG DV WKH PRVW HIIHFWLYH PHWKRG (BCG), and Diphtheria-Pertussis-Tetanus (DPT). Tetanus of propagating immunization messages to the communities. Toxoid was given to women of childbearing age (WCBA). We constructed radio spots in English and Bari languages. The VSRWV KDG FRQFLVH PHVVDJHV RQ WKH VLJQLÀFDQFH RI LPPXQL]Dtion, as well as dates and locations where free vaccines would The Campaign &RRUGLQDWLRQ ZLWK OLNH PLQGHG RUJDQL]DWLRQV ZDV WKH ÀUVW be administered to children and women of childbearing age. In step. We teamed up with a local community based orga- order to augment the communication component of the pronization, the Sudan Health Association (SUHA) and a lo- JUDP HDFK ÀHOG VXSHUYLVRU ZDV SDUWQHUHG ZLWK RQH FRPPXcal World Health Organization Expanded Program for nity mobilizer. The community mobilizer traveled to churches, Immunization (EPI) supervisor. The coordination meetings were markets, and individual houses to inform the community about set up under the leadership of CHD. Pooling of human, techni- the immunization campaign. In some areas these mobilizcal, and monetary resources from different players increased the ers used megaphones. The purpose of the mobilizers was to likelihood that the ARC’s campaign would be successful. Despite reinforce the message disseminated through the radio spots. the fact that the ARC funded most of the program, it was neces- 7KH VXSHUYLVRUV KDG WKH ÀQDO VD\ RQ ZKHUH WR VHQG WKH PRELsary to have CHD take the leadership role in order to build CHD lizers, depending on the ground situation. In some cases vaccapacity and promote government ownership of these activities. FLQHV ZRXOG DUULYH ODWH DW WKH VSHFLÀF ORFDWLRQV DQG FRPPXQLW\ Due to the shortage of human resources for health mobilizers played a critical role in updating the communities. 7KH FRYHUDJH UHVXOWV RI WKLV FDPSDLJQ UHà HFW RQO\ WKH services, recruitment of competent vaccinators posed a challenge. Many health workers were already working in health fa- targeted age group. Total immunization coverage before the cilities, and we did not want to create an internal brain drain campaign (January to July), was 13.8% of the 7,848 children by luring these workers towards an independent vertical pro- under one year of age in Kajo Keji County. After the three gram. As a result, CHD recruited laid-off health workers to month acceleration campaign, vaccine coverage increased to our program. They had been laid-off because the Southern 2XU FDPSDLJQ DGPLQLVWHUHG GRVHV RI 2UDO 3ROLR Sudan government could not afford to pay their salaries, de- Vaccine, 2,087 doses of measles, 1,466 doses of BCG, and 4,227 spite the unprecedented shortage of human resources for total doses of all DTPs (South Sudan Ministry of Health, 2010). JGH t Volume 1 t Issue 1 t Spring 2011

20

Field Notes Global Health Implications Global Health immunization efforts have focused on increasing access to vaccines in low-income countries. Availability of vaccines is important, but safe administration of potent antigens to remote populations poses a completely different set of challenges. Southern Sudan has no electricity, which PDNHV PDLQWHQDQFH RI FROG FKDLQ GLIĂ€FXOW &ROG FKDLQ LV WHPperature-controlled supply chain;Íž vaccines must be maintained DW FHUWDLQ WHPSHUDWXUHV WR SUHVHUYH WKHLU HIĂ€FDF\ ,Q RUGHU WR maintain the cold chain, the immunization program relies on costly generators, frozen icepacks, cold boxes and consistent WUDQVSRUWDWLRQ WR UHPRWH KHDOWK IDFLOLWLHV DOO VLJQLĂ€FDQWO\ UDLVing operational costs. These are the main reasons why lack of routine immunization activities at the Primary Healthcare Center (PHCC) are in line with low immunization coverage rates in South Sudan. The national cold chain storage is at Juba, the capital of South Sudan, but vaccines do not trickle down to more rural and inaccessible areas of the country. It would take a long time for the Southern Sudan government to provide permanent electricity to Kajo Keji County. Electricity is a requirement for cold chain maintenance. In the meantime, routine immunization strengthening can be achieved by procuring solar freezers and kerosene fridges at every Primary Healthcare Unit (PHCU). In this situation, only monthly transportation of vaccines and kerosene would be required, since the facilities would have the capacity WR PDLQWDLQ WKH HIĂ€FDF\ RI YDFFLQHV IRU WKH HQWLUH PRQWK ,Q return, there would be fewer disruption of services and the population would have consistent access to immunizations. This would increase the immunization coverage in a more sustainable fashion and strengthen management of immunization information systems. Despite the presence of NGOs in Kajo Keji, including (at one time) the Global Alliance for Vaccines and Immunizations (GAVI) and UNICEF, there are no solar freezers at any PHCC, and only four PHCCs have working kerosene IULGJHV 7KH *$9, DOOLDQFH KDV DOUHDG\ VSHQW LQ 6Xdan, according to their latest reports. However, they have made no investments in solar freezers or refrigerators in Kajo Keji County health facilities (GAVI Alliance, 2008). A WHO-approved solar IUHH]HU UHIULJHUDWRU XQLW FRVWV ,QVWDOODWLRQ RI WKHVH IUHH]HUV DQG UHIULJHUDWRUV LQ HDFK KHDOWK IDFLOLW\ ZRXOG VLJQLĂ€FDQWO\ improve the routine immunization activities, because health facilities would be able to store their vaccines for longer periods of time, given the presence of solar rays. The lack of permanent cold chain solutions in Kajo Keji County demonstrates the deĂ€FLHQF\ RI ORQJ WHUP VWUDWHJLF WKLQNLQJ LQ PDQ\ *OREDO +HDOWK programs that have previously worked in Kajo Keji County. The other obstacle in improving overall immunization outFRPHV LQ SRVW FRQĂ LFW VHWWLQJV LV WKH IRFXV RQ SROLR HUDGLFDWLRQ campaigns. A global commitment to eradicate polio is a noble RQH +RZHYHU LQ SRVW FRQĂ LFW VHWWLQJV IRFXVLQJ HQHUJ\ DQG UHsources on only polio, while there are other vaccines that are just as important and just as easy to administer at the same time as polio vaccines, does not make sense. On November 1, 2010 the WHO initiated a “National Immunization Day,â€? with a strong community mobilization component and a network of vaccinators that reached every corner of the Kajo Keji County—but administered only Polio drops (WHO, 2010). It is dangerous to ignore a measles coverage of only 9%, even if WHO’s goal is to

eradicate polio. In a country that has limited health infrastructures, it would have made sense to take advantage of the opportunity and administer additional vaccines as well. If you consider the lives that could have been saved by integrating services, global KHDOWK DFWLYLWLHV IRFXVHG RQ LPPXQL]DWLRQV LQ SRVW FRQĂ LFW VHWtings should be broad in scope and provide children with all the vaccines they need. When higher percentages of immunization coverage are established, then we can venture towards more vertical, targeted approaches, like a polio eradication campaign. Immunization is one of the most potent and cost-effective public health interventions of the modern era. In postFRQĂ LFW VHWWLQJV VWUHQJWKHQLQJ KHDOWK V\VWHPV VXFK DV FROG chain solutions, and integrating immunization services will lay the foundation for sustainable immunization programs.

References

21

Clements, C. J., Nshimirimana, D., & Gasasria, A. (2008). Using immunization delivery strategies to accelerate progress in Africa towards achieving the Millennium 'HYHORSPHQW *RDOV 9DFFLQH ² Cometto, G., Fritsche, G., & Sondorp, E. (2010). Health sector recovery in early SRVW FRQà LFW HQYLURQPHQWV H[SHULHQFH IURP VRXWKHUQ 6XGDQ 'LVDVWHUV 909. Gavi Alliance. (2008). Country Data;͞ Sudan. Retrieved from: www.gavialliance.org +RXZHOLQJ 7 $ - .XQVW $ ( 0RVHU . 0DFNHQEDFK - 3 5LVLQJ XQGHU PRUWDOLW\ LQ $IULFD ZKR EHDUV WKH EUXQW" 7URSLFDO 0HGLFLQH ,QWHUQDWLRQDO Health, 11(8), 1218-1227. +RXZHOLQJ 7 .XQVW $ 0RVHU . 0DFNHQEDFK - 3 5LVLQJ XQGHU mortality in Africa: who bears the brunt? Tropical Medicine & International Health, 11(8), 1218-1227. International Crisis Group. (2002). God, Oil and Country: Changing the Logic of War in Sudan. Africa Report No 39. Brussels: ICG. Jamison, D. T., Breman, J. G., & Measham, A. R. (2006). Disease Control Priorities in Developing Countries 2nd edition. Washington, DC: World Bank. Modlin, J. F., (2010). The bumpy road to polio eradication, New England Journal of Medicine, 363(19), 1870. Southern Sudan Ministry of Health. (2010). Kajo Keji County Immunization Records. Southern Sudan Centre for Census, Statistics and Evaluation. (2010). Key Indicators for Southern Sudan. Juba: SSCCSE. South Sudan Referendum Commission. (2011). Final Referendum Results. Juba: SSRC http://www.ssrc.sd/SSRC2/newsview.php. Tangerman, R. H., Nohynek, H., & Eggers, R. (2007) Global control of infectious diseases by vaccination programs. Birkhäuser Advances in Infectious Disease. Basel. Waisbord, S., Shimp, L., Ogden, E. W., & Morry, C. (2010). Communication for polio eradication: improving the quality of communication programming through UHDO WLPH PRQLWRULQJ DQG HYDOXDWLRQ -RXUQDO RI +HDOWK &RPPXQLFDWLRQ World Health Organization. (2010). South Sudan Weekly Report, week 43, 2010. Juba: WHO.

JGH t Volume 1 t Issue 1 t Spring 2011

Perspectives

A Snapshot of HIV in Pakistan On the brink of an epidemic

Eitezaz Mahmood Northwestern University, Evanston, IL, USA Introduction As the life expectancy of patients with HIV/AIDS in developing countries steadily approaches that of uninfected SHUVRQV WKH HIIRUW WR ÀJKW DQG FXUH $,'6 KDV ORVW SULRULW\ WR other top killers (Hogg, Lima, Sterne, Grabar, & Battegay, 2008). Therefore, the total funding for HIV/AIDS has declined in the past few years (UNAIDS, 2010). Although this may be construed as a welcome change, this news does not bode well for the developing world - particularly for countries like Pakistan, where the ÀJKW DJDLQVW +,9 $,'6 KDV MXVW EHJXQ ,Q 3DNLVWDQ WKH SUHYDlence of HIV/AIDS has steadily risen in the past decade among vulnerable groups such as sex workers and drug users. Despite the best efforts of national and international authorities to prevent a JHQHUDOL]HG HSLGHPLF ZLWK WKH UHFHQW à RRGV LQ 3DNLVWDQ DQG WKH overall decline in HIV/AIDS funding, health care workers are ÀQGLQJ WKHPVHOYHV ZLWK LQFUHDVLQJO\ WLJKWHU EXGJHWV 7KXV 3DNLstan stands at the crossroads that developed nations were at just a few decades ago, but with fewer and ever dwindling resources.

WR IURP WR ZKLOH WKH SUHYDOHQFH DPRQJ IHmale sex workers has increased from 0% to 0.91% during the same time period (National AIDS Control Program, 2010).

Bridge Between Vulnerable Groups and the General Populace

The steady rise of HIV infections has been a source of grave concern for health workers not only due to its immediate economic and health costs but also the danger it presents in the future. The Asian Epidemic Model (AEM) is a semi-empirical epidemiological model that has been shown to be a reliable indicator of the spread of HIV/AIDS in Asian countries (Khan & Khan, 2010). $FFRUGLQJ WR WKH $(0 +,9 $,'6 Ă€UVW becomes concentrated among the MARP, such as IDUs and sex workers, and subsequently makes its way to the general population through bridging groups, who are in sexual contact with these high-risk groups (Khan & Khan, 2010). Pakistan was preYLRXVO\ FODVVLĂ€HG DV D ´KLJK ULVN ORZ SUHYDOHQFHÂľ FRXQWU\ EXW KDV now reached the “concentrated phaseâ€? of the epidemic with an Prevalence in Vulnerable Groups extremely high prevalence rate among certain vulnerable populaWhen examined from an epidemiological standpoint, the tions (World Health Organization, 2011). The AEM predicts that situation in Pakistan is troubling. Although less than 0.1% of the the virus will reach the general population in Pakistan through PLOOLRQ SHRSOH OLYLQJ LQ 3DNLVWDQ DUH LQIHFWHG ZLWK +,9 WKH these particular bridge groups. Although the bridging populaprevalence of HIV is increasing at an alarming rate. Currently, WLRQ LV GLIĂ€FXOW WR FKDUDFWHUL]H WKH ZLYHV RI ,'8V FOLHQWV RI VH[ there are an estimated 97,400 people living with HIV in Paki- workers, truck drivers, and migrant workers all maintain contact stan, among whom only 4,112 are registered with the govern- with the MARP through unprotected sex (National AIDS ConPHQW DQG UHFHLYLQJ DQWLUHWURYLUDO WUHDWPHQW :DVLI trol Program, 2007). Current estimates approximate that this EULGJLQJ SRSXODWLRQ WRWDOV DERXW PLOOLRQ SHRSOH LQ 3DNLVWDQ (National AIDS Control Program, 2007). Considering the high “Currently, there are an estimated prevalence of unsafe sexual practices and lack of awareness of HIV/AIDS among the bridging population, there is great po97,400 people living with HIV in tential for rapid dissemination of the virus to a far greater popuPakistan, among whom only 4,112 are lation (National AIDS Control Program, 2007). In the event that HIV reaches the general population, transmission will be registered with the government and H[WUHPHO\ GLIĂ€FXOW WR FXUWDLO $V RI QRZ KRZHYHU D ZLQGRZ RI opportunity for health workers remains open since the virus 1,852 receiving antiretroviral treatment.â€? is still only concentrated among a select group of individuals. However, the prevalence rate among the most at risk population (MARP), such as sex workers and drug users, is much higher and suggests that the transfer of HIV to the general population may already be underway. For instance, 23% of Pakistan’s UHFRUGHG LQMHFWLQJ GUXJ XVHUV ,'8V DUH LQIHFWHG ZLWK +,9 ZKHUHDV RQO\ ZHUH LQIHFWHG LQ :RUOG +HDOWK Organization, 2011). Among sex workers, the prevalence is approximately 1% and has been increasing as well (World Health Organization, 2011). For instance, the prevalence of HIV among transgender (hijra) sex workers has jumped from 0.8% JGH t Volume 1 t Issue 1 t Spring 2011

22

Governmental Intervention

Fortunately, healthcare authorities in Pakistan have realized the direness of the situation. Since 2002, Pakistan has made VLJQLÀFDQW SURJUHVV LQ SUHYHQWLQJ WKH VSUHDG RI +,9 $,'6 Through syringe-needle exchange programs, education, detoxiÀFDWLRQ EHKDYLRU FRXQVHOLQJ UHKDELOLWDWLRQ PHGLFDO VHUYLFHV and antiretroviral therapy, IDUs have access to a variety of ways to protect themselves and others from infection (Ghauri, Rehman, Azam, & Shah, 2002). In light of the increasing prevalence of HIV among IDUs, the Government of Pakistan has

reviewed its current legislation regarding HIV/AIDS prevention and the revised initiative, called National Strategic Framework (NSF-II), essentially redoubles previous efforts in HIV prevention by broadening the scope of HIV/AIDS control to reach women, children, and young adults (National AIDS Control Program, 2010). Despite the recent increase in the number of people with HIV/AIDS, there have been various tangible successes in HIV/AIDS prevention. For instance, in

“An estimated 5 million people are connected with the MARP through unprotected sex and are at risk of acquiring HIV.â€? RQO\ DQ HVWLPDWHG RI ,'8V ZHUH UHDFKHG WKURXJK +,9 SUHYHQWLRQ SURJUDPV ZKHUHDV LQ ZHUH UHDFKHG (National AIDS Control Program, 2010). However, it should be noted that this is well below the minimum needed to contain an epidemic (National AIDS Control Program, 2010). In addition, the percent of IDUs using sterile injecting equipment has risen from 28% to 78% since 2008 (National AIDS Control Program, 2010). According to Oussam Tawil, the UNAIDS coordinator, “Pakistan has made substantial progress over recent years, including in addressing sensitive social issues and increasingly involving people living with HIV in the forefront of the AIDS responseâ€? (UNAIDS, 2010). Although the percent RI SHRSOH EHLQJ UHDFKHG LV VWLOO QRW VXIĂ€FLHQW WR SUHYHQW WKH LPpending epidemic, NSF-II promises to expand the response.

Factors Detrimental to HIV/AIDS Control

The momentum gathered in the past few years in addressing the spread of HIV in Pakistan may soon be lost. Despite having constructed a thorough plan to prevent the spread of HIV/AIDS, Pakistan currently faces severe shortages that may hinder the initiatives in NSF-II from proceeding. After a personal interview with the Director of the National AIDS Control Program in Pakistan, Dr. Sajid Ahmad, it became clear to me that the lack of funding presents the greatest obstacle for epidemiologists and healthcare workers seeking to curtail a genHUDOL]HG HSLGHPLF :LWK WKH UHFHQW à RRGV LQ 3DNLVWDQ UHJDUGHG by the United Nations as worse than the 2004 Asian tsunami, the 3DNLVWDQ HDUWKTXDNH DQG WKH +DLWL HDUWKTXDNH FRPbined, most government and international funds for HIV prevention had to be reallocated to disaster relief (Warraich, 2011). :KLOH WKH KDYRF ZUHDNHG E\ WKH à RRG FHUWDLQO\ GHPDQGV DQ appropriate allocation of effort and aid, this does not legitimize the world’s seeming neglect of the impending HIV/AIDS epidemic in Pakistan. The cost of inaction from failing to address the spread of HIV/AIDS right now will only rise exponentially if the virus is allowed to reach the general population.

Conclusion In a country already devastated by three KXPDQLWDULDQ GLVDVWHUV WKH HDUWKTXDNH WKDW NLOOHG over a hundred thousand people, the millions of Pakistanis internally displaced by the war on terrorism, and WKH UHFHQW Ă RRGV LW LV SDUDPRXQW WR VXSSRUW WKH OLIHVDYLQJ

Perspectives

measures in the NSF-II to prevent future tragedy. Although the prevalence of HIV in Pakistan is low, it is highly concentrated among high-risk groups and threatens to spill over to the general population if appropriate preventive measures are not taken. According to the AEM, Pakistan lags just one short step behind neighboring India in the advance of an HIV/AIDS epidemic, ZKHUH PLOOLRQ SHRSOH OLYH ZLWK WKH YLUXV DQG LW DFFRXQWV IRU of the healthcare budget. In spite of the urgency of the current VLWXDWLRQ +,9 $,'6 IXQGLQJ KDV VXIIHUHG D GHFOLQH IRU WKH ÀUVW WLPH LQ \HDUV WKDW FRXOG VHULRXVO\ LPSHGH DOO SULRU SURJUHVV (Win, 2010). In 2000, the United Nations agreed to halt and VWDUW UHYHUVLQJ WKH DGYDQFH RI +,9 $,'6 E\ +RZHYHU European countries are now giving a total of $6oo million dollars less this year, contributing to the global $10 billion dollar shortage in funds needed to treat and prevent HIV/AIDS (Win, 2010). Now more than ever, world leaders must be called upon to uphold their previous commitPHQW LQ WKH ÀJKW DJDLQVW +,9 $,'6 D IDLOXUH WR GR VR promises dire repercussions for countries like Pakistan.

Acknowledgements Special thanks to Dr. Sajid Ahmad of the National AIDS Control Program in Pakistan, Dr. Feroze Mahmood of Harvard Medical School, and Dr. Haider Warraich of Harvard Medical School

References Ghauri, A., Rehman, N., Azam, S., & Shah, S. (2002). Harm reduction program for injecting drug users (IDUs) in Karachi, Pakistan. Internation Conference on AIDS . Hogg, R., Lima, V., Sterne, J., Grabar, S., & Battegay, M. (2008). Life expectancy of individuals on combination antiretroviral therapy in high-income countries: a collabRUDWLYH DQDO\VLV RI FRKRUW VWXGLHV 7KH /DQFHW Khan, A. A., & Khan, A. (2010, April 4). The HIV epidemic in Pakistan. Journal Pakistani Medical Association . National AIDS Control Program. (2007). National HIV and AIDS Strategic Framework 2007-2012. Ministry of Health, Islamabad. National AIDS Control Program. (2010). UNGASS Pakistan Report. Progress Report, Ministry of Health, Islamabad. 81$,'6 )HEUXDU\ /DFN RI UHVRXUFHV FRXOG XQGHUPLQH JDLQV PDGH LQ WKH HIV response in Pakistan [Press release]. Retrieved from: www.unaids.org UNAIDS. (2010, November 16). New reports show that despite commitment, total philanthropic funding for AIDS in slight decline [Press release]. Retrieved from: unaidstoday.org Warraich, H. (2011, January 14). The mounting public health crisis in Pakistan. Foreign Policy . Wasif, S. (2011, February 1). National AIDS survey to kick off this month. The Express Tribune. Win, T.-L. (2010, September 10). Funding Cuts Threaten Global Target on HIV/ AIDS. (Thomson Reuters Foundation) Retrieved from www.trust.org/alertnet/news/ interview-funding-cuts-threaten-global-target-on-hivaids World Health Organization. (2011). Brief on World AIDS Day. Islamabad.

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JGH t Volume 1 t Issue 1 t Spring 2011

Perspectives

Ethical Dilemmas in Global Clinical Electives

Mei Elansary1, Lauren K Graber1, Audrey M Provenzano2, Michele Barry3, Kaveh Khoshnood4, Asghar Rastegar1 1 Yale School of Medicine, New Haven, CT, USA, 2 Brigham and Women’s Hospital, Boston, MA, USA, 3 2IĂ€FH RI WKH 'HDQ *OREDO +HDOWK 6WDQIRUG 8QLYHUVLW\ 6WDQIRUG &$ 86$ 4 Yale School of Public Health, New Haven, CT, USA Introduction A recent Association of American Medical Colleges survey found that 30% of graduates of U.S. medical schools reported participating in global health experiences (Association of American Medical Colleges, 2010). Previous research has shown that international rotations foster cultural awareness, elicit a deeper XQGHUVWDQGLQJ RI SRYHUW\ DQG LQĂ XHQFH VWXGHQWV WR SXUVXH FDreers caring for underserved populations (McKinley, Williams, Norcini, & Anderson, 2008;Íž Ramsey, Haq, Gjerde, & Rothenberg, 2004;Íž Shaywitz & Ausiello, 2002). Despite considerable interest in global health education from students and its reportHG EHQHĂ€WV KRZHYHU PRVW VFKRROV KDYH QRW LQWHJUDWHG IRUPDO global health programs into their curricula (Izadnegahdar et al., 2008;Íž Panosian & Coates, 2006). Only recently have formal ethical guidelines for global health experiences been introduced (Crump, Sugarman, & Working Group on Ethics Guidelines for Global Health Training, 2010;Íž Provenzano et al., 2010). The lack of an institutionalized framework for global health education has had important ethical and educational implications for medical students who pursue electives in resource-poor settings. International research programs are governed by well-developed clinical guidelines, but global clinical electives carry with them many ethical challenges that have received relatively little attention (Shah & Wu, 2008). While international research programs contribute to the larger academic discourse and are subject to institutional review board approval and other ethical standards, clinical programs that involve students also impact the local community and thus require similar attention. In particular, the perspectives and needs of institutions that host and support foreign students at the international clinical sites in low-resource settings (“host institutionsâ€?) have been neglected. Electives have been described as a “one-way opportunityâ€? that favor students who visit from wealthier institutions (Mutchnick, Moyer, & Stern, 2003). Paradoxically, the disproSRUWLRQDWH IRFXV RQ WKH EHQHĂ€WV IRU YLVLWLQJ VWXGHQWV UDWKHU WKDQ for the host institution reinforces the same disparities in wealth and opportunity that global health programs seek to address. The case studies presented here, based on the experiences of the student authors, show the need for a more cohesive, informed approach to global health electives. Through building formal, long-term, global North-South partnerships, medical schools and host institutions may prevent many of the ethical dilemmas that arise as a result of global clinical experiences (Horton, JGH t Volume 1 t Issue 1 t Spring 2011

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:H UHFRPPHQG VSHFLĂ€F JXLGHOLQHV WR HQVXUH WKDW FOLQLcal electives in low-resource settings are ethical and mutuDOO\ EHQHĂ€FLDO IRU ERWK YLVLWLQJ VWXGHQWV DQG KRVW LQVWLWXWLRQV

Burdens on the Host

While in Honduras for a clinical rotation, Narae relies on the physician running the clinic to explain patients to her because she is unfamiliar with conditions there. She also requires constant guidance from the staff for help with interpretation and simple tasks around the clinic. :KLOH WKH EHQHĂ€WV RI JOREDO HOHFWLYHV IRU $PHULFDQ PHGLFDO trainees are well-documented, research has not been conductHG WR DVVHVV ZKHWKHU WKHVH SDUWQHUVKLSV EHQHĂ€W KRVW FRXQWULHV (Gupta, Wells, Horwitz, Bia, & Barry, 1999). In this scenario, the physician was diverted from his responsibilities in order to help support and educate Narae. Physicians in low-resource settings are often in high-demand, and any diversion of their clinical time may be detrimental to patient care. Further, more local staff may H[SHQG VLJQLĂ€FDQW DPRXQWV RI WLPH DQG HQHUJ\ WR RULHQW PHGLFDO trainees, arrange for housing and transportation, locate translation services, and provide general logistical support. There may EH DGGLWLRQDO Ă€QDQFLDO EXUGHQV ´VXFK DV XQDFFRXQWHG IRU FRVWV associated with hosting trainees that may include paying for visas, food, and incidental costsâ€? (Crump & Sugarman, 2008). To further complicate such challenges, host institutions with fewer resources may be hesitant to address such concerns with wealthier, “sending institutionsâ€? to avoid jeopardizing relationships. Reasonable expectations for both institutions should be made explicit at the outset of collaboration. For instance, comprehensive pre-departure training for students is one way to decrease the demands on hosting institutions. Mentors in developing countries should be able to expect visiting students to be well-prepared for the experience with knowledge of the regional culture, local disease epidemiology, and local language when possible. Electives implemented within a structured partnership can alleviate the demands on the host country by providing an infrastructure for student preparation at home. In recognition of the time and effort expended by local staff, appropriate compensation should be offered to clinical tutors, LQWHUSUHWHUV DQG DGPLQLVWUDWRUV 7DQJLEOH EHQHĂ€WV IRU SDUWners in the host country can include educational resources, UHVHDUFK VXSSRUW DQG SURMHFW GHYHORSPHQW LQ DGGLWLRQ WR Ă€nancial compensation as is appropriate in a given setting. As an example, institutions from the global North could sponsor training programs for health care workers at host institutions.

Perspectives Clinical Limits

have discussed potential complications with the patient. “In our culture, when you say something could happen, we believe that you are predicting that this will happen!â€? The patient continues to refuse the procedure. Obtaining informed consent is a complex undertaking even at one’s home institution. The informed consent process, however, takes on further complexity when one participates in the care of patients of an entirely different culture, and provides an example of why cultural competency training is necessary for successful global rotations. While the concept of “informed consentâ€? is largely heralded by international human rights groups, its value and role may have a different meaning in different cultures (Barry, 1988). Some researchers have asserted that some communities Ă€QG LQIRUPHG FRQVHQW WR EH HPSRZHULQJ ZKLOH RWKHUV Ă€QG LW WR minimize the patient’s hope and undermine his or her family-cenWHUHG FXOWXUH %ODFNKDOO 0XUSK\ )UDQN 0LFKHO $]HQ &DUUHVH 5KRGHV )RU H[DPSOH VLQFH LQIRUPHG FRQVHQW for the paracardiocentesis procedure requires an individual patient to make the decision, the consent process inherently does not incorporate the beliefs and values of family members and cultural leaders into patient care. Such complexities highlight the relevance of Lawrence Gostin’s question: “Is the kind of rugged individualism inherent in informed consent truly respectful RI DOO SHRSOH LQ DOO FXOWXUHV"Âľ *RVWLQ $V DQ DOWHUQDWLYH WR the individualistic nature of informed consent, Hyun posits that the incorporation of family-centered culture into consent, given that it represents the values held by the patient, does not compromise patient autonomy (Hyun, 2002). Thus, modifying the model of consent to match cultural expectations is a necessary VWHS ZKHQ REWDLQLQJ LQIRUPHG FRQVHQW LQ D VSHFLĂ€F FRPPXQLW\ A discussion of informed consent in the context of culture is helpful for students preparing for an elective abroad. Students can learn more about medical decision-making in a community by actively seeking advice from individuals intimately involved in patient care. In this example, Elisa should have received education prior to her departure about Burmese attitudes towards informed consent, culture, and hierarchy. With this insight, Elisa could have sat down with her mentor and discussed her thoughts and questions about informed consent. Elisa and her mentor could have then approached the patient together, as a visiting student should not seek informed consent from patients without supervision. The informed consent process is one example of a situation LQ ZKLFK VWXGHQWV ZRXOG EHQHĂ€W IURP FXOWXUDO FRPSHWHQF\ HGXcation as a component of pre-departure training, which would KHOS WR VXSSOHPHQW FDUHIXO UHĂ HFWLRQ XSRQ WKHLU H[SHULHQFHV on the ground. Indeed, many scholars of global health education argue for more cultural competency training for medical students (Drain, Holmes, Skeff, Hall, & Gardner, 2009). According to Betancourt and colleagues, cultural competence involves “understanding the importance of social and cultural LQĂ XHQFHV RQ SDWLHQWV¡ KHDOWK EHOLHIV DQG EHKDYLRUV FRQVLGHUInformed Consent ing how these factors interact at multiple levels of the health While working in a clinic serving Burmese refugees, Elisa diagnoses FDUH GHOLYHU\ V\VWHP ÂŤDQG Ă€QDOO\ GHYLVLQJ LQWHUYHQWLRQV WKDW a patient with cardiac tamponade. The team believes pericardiocente- take these issues into accountâ€?(Betancourt, Green, Carrillo, sis is necessary. Elisa sits down with the interpreter and patient to ex- & Ananeh-Firempong, 2003). Cultural competency educaSODLQ WKH ULVNV DQG EHQHĂ€WV RI WKH SURFHGXUH 7KH SDWLHQW LV XSVHW tion can provide students with the opportunity to study loto hear about the needle going close to her heart and adamantly refuses cal culture(s) and concepts intimately intertwined with the the procedure. The attending physician tells Elisa that she should not practice of medicine, such as autonomy and personhood. Ramy has arrived in Zambia for an elective at a busy public hospital. He is frequently left alone to care for patients as there are few physicians available to supervise him. Ramy is anxious, and feels he is providing care beyond his capabilities. He brings these concerns to the Chief of Services who explains, “This is the best training you could be getting in global KHDOWK :H GHSHQG XSRQ RXU IRUHLJQ FROOHDJXHV WR KHOS ZLWK VKRUW VWDIĂ€QJ Âľ With a strong desire to help and learn, medical students may understandably be put in a position to care for patients beyond their level of training in resource-constrained settings. As articulated by Shah and Wu, “This desire to help, comELQHG ZLWK UHODWLYH LQH[SHULHQFH FDQ SRVH HWKLFDO FRQĂ LFWV and leave both patients and students vulnerable to negative outcomesâ€?(Shah & Wu, 2008). This is a concern particularly with students early in their training, when they have limited clinical exposure. In this scenario, Ramy recognizes that he is QRW TXDOLĂ€HG WR ZRUN LQGHSHQGHQWO\ 0DQ\ VWXGHQWV KRZHYHU do not have this same insight. As Crump and Sugarman wrote, “In resource-constrained health care settings, trainees from reVRXUFH UHSOHWH HQYLURQPHQWV PD\ KDYH LQĂ DWHG LGHDV DERXW WKH value of their skills and yet may be unfamiliar with syndromic approaches to patient treatment that are common in settings with limited laboratory capacityâ€?(Crump & Sugarman, 2008). To prevent the ethical burden placed on students, medical schools must inform host institutions of students’ skills and abilities. A study in the Solomon Islands revealed that 80% of local health workers did not understand the level of responsibility the international medical students were to assume and allowed them WR ZRUN XQVXSHUYLVHG 5DGVWRQH ,Q UHVRXUFH SRRU VHWWLQJV patients are particularly vulnerable to “dissymmetries of powerâ€? in medicine (Farmer & Campos, 2004). This situation illustrates the common misconception that “people who live in poverty ZLOO EHQHĂ€W IURP DQ\ PHGLFDO VHUYLFHV LUUHVSHFWLYH RI WKH H[SHrience or lack thereof, of the providerâ€?(Shah & Wu, 2008). This perspective assumes incorrectly that low resource settings do not share the same ethical and professional standards for the care of patients. As a part of medical education, it is important to model that all patients in all settings deserve the highest quality of care. 8 6 LQVWLWXWLRQV FXUUHQWO\ FKDUJH VLJQLĂ€FDQW WXLWLRQV IRU foreign students taking an elective. At Yale, for example, stuGHQWV IURP LQWHUQDWLRQDO VFKRROV SD\ D WXLWLRQ IHH RI USD for a four-week elective (Yale School of Medicine, 2009). In turn, U.S. medical schools should provide host institutions with the support and resources needed for student learning. Providing host physicians with stipends in recognition of their teaching can foster appropriate supervision for students visiting low-resource settings. Ideally, institutional partnerships should provide equitable educational opportunities for medical students from both the global North and global South.

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Perspectives Distributive Justice

-RKQ DUULYHV RQ D WXEHUFXORVLV ZDUG LQ 8JDQGD RXWĂ€WWHG ZLWK KLV N95 mask. He notices none of his colleagues are wearing a mask. When he inquires about this, they reply, “Our supply of masks has run out, but we have ventilated the room better since the outbreak.â€? John continues to wear his mask, feeling awkward, but when one of his patients is diagnosed with cavitary XDRTB, he is relieved he has done so. Now he does not know whether to share his few N95 masks with the staff, all of whom are worried about another outbreak. The concept of distributive justice requires that both the KDUPV DQG WKH EHQHĂ€WV RI UHVHDUFK EH HTXLWDEO\ GLVWULEXWed and thus not adding further burden to already vulnerable groups (Council for International Organisations of Medical Sciences and the World Health Organisation, 2002). This is a narrow view of the concept, as distributive justice can be similarly applied to clinical scenarios, including equitable access to protective gear and post-exposure prophylaxis for all health care workers. In this scenario, John was in the tenuous position of KDYLQJ DFFHVV WR 1 PDVNV ZKLOH RWKHUV GLG QRW KDYH WKLV SURtection. John’s instinct to share is well intentioned, but he should not compromise his own safety. This problem could have been resolved at an institutional level with a thoughtful policy regarding the provision of resources for the safety of students and staff at the host institution. This is critical as institutions are responsible for the safety of their students, but must not perpetuate inequities between students and their hosts. While pracWLFDO DQG Ă€QDQFLDO OLPLWDWLRQV PD\ PDNH LW GLIĂ€FXOW WR SURYLGH IRU the safety of all health professionals, the principle of distributive justice should be considered and upheld when possible.

Conclusion: Recommendations for Ethical and Equitable Global Electives

Several recommendations are offered here for global collaboration between medical schools and host institutions (See Table 1), with the primary aim of improving the quality of patient care in low-resource settings. Several different collaborations model this goal, exemplifying both the feasibility and importance of these relationships and pre-departure trainings (AFMC Global Health Resource Group, 2008;͞ Barry, 2011;͞ Chase & Evert, (LQWHU] .HOOH\ 0DPOLQ 9DQ 5HNHQ (OHFWLYHV IRU students from both the global North and global South represent one component of such collaboration. Furthermore, long-term LQVWLWXWLRQDO SDUWQHUVKLSV ZLWK DSSURSULDWH ÀQDQFLDO FRPSHQVDtion have the potential to improve the quality of global health education, reduce the burden on host institutions, and create an equitable and ethical framework for the training of physicians. 7DEOH 5HFRPPHQGDWLRQV IRU 1RUWK 6RXWK ,QVWLWXtional Collaboration Between Medical Schools and Host Institutions Development of mutually beneficial North-South partnerships between medical schools and cooperating international sites Development of educational programs designed to improve education of local health professionals through shared educational opportunities for local and international students Compensation for hosting institution faculty, clinical tutors, interpreters, housing, and logistical support Pre-departure training that includes explicit expectations of student responsibilities, discussion of ethical scenarios, cultural competency training, local disease epidemiology, and basic language instruction

Acknowledgements The authors would like to thank Sam Luboga, MD of Makerere University Faculty of Medicine in Uganda for his comments on the manuscript.

As the global health community faces ongoing challenges, References of American Medical Colleges. (2010). 2010 medical school graduamedical student interest in global electives is encouraging and Association tion questionnaire: All schools summary report. Washington, DC: Association of needed. Such electives can familiarize students with gross ineq- American Medical Colleges. uities in health resources between the global North and South of Faculties of Medicine of Canada (AFMC) Global Health Resource and encourage student activism and advocacy concerning health Association Group and Canadian Federation of Medical Students Global Health Program. disparities. Many factors, however, compound to make global (2008). Preparing Medical Students for Electives in Low-Resource Settings: A temhealth electives complex, including a misunderstanding of the plate for National Guidelines for Pre-Departure Training. Retrieved from: www. responsibilities of a health professional student, perceptions FIPV RUJ SLFWXUHV ÀOH *OREDO +HDOWK 3UH GHSDUWXUH *XLGHOLQHV )LQDO of culture and ethnicity, and socioeconomic disparities. Stu- Barry, M. (1988). Ethical considerations of human investigation in developing dent preparation can often be inadequate, leaving students ill countries: The AIDS dilemma. The New England Journal of Medicine, 319(16), equipped for the clinical and ethical challenges posed by global 1083-1086. H[SHULHQFHV 7KHVH FRQFHUQV DUH PDJQLÀHG E\ WKH ODFN RI DWWHQ- Barry, M. (2011). Personal correspondence on the Doris Duke Family Foundation tion given to the burdens on local staff and institutions in set- initiative with Stanford and Johns Hopkins which will be debuting a web based ethics teaching module for students going on short term overseas tings of disproportionate poverty and disease. While the focus open-access rotations. of this paper is on the unique ethical dilemmas posed to medical students by short-term clinical electives, it is important to recog- Betancourt, J. R., Green, A. R., Carrillo, J. E., & Ananeh-Firempong, O. (2003). nize more broadly that global health training programs and their 'HÀQLQJ FXOWXUDO FRPSHWHQFH $ SUDFWLFDO IUDPHZRUN IRU DGGUHVVLQJ UDFLDO HWKQLF disparities in health and health care. Public Health Reports (Washington, D.C.: ethical challenges encompass multiple disciplines and varying 1974), 118(4), 293-302. levels of trainees. In order to address these wider concerns, the Working Group on Ethics Guidelines for Global Health Training %ODFNKDOO / - 0XUSK\ 6 7 )UDQN * 0LFKHO 9 $]HQ 6 (WKQLFLW\ and attitudes toward patient autonomy. JAMA : The Journal of the American Medi(WEIGHT) recently developed a set of broadly applicable ethi- FDO $VVRFLDWLRQ cal guidelines and practices for institutions, trainees, and sponVRUV RI ÀHOG EDVHG JOREDO KHDOWK WUDLQLQJ &UXPS HW DO &DUUHVH - $ 5KRGHV / $ :HVWHUQ ELRHWKLFV RQ WKH QDYDMR UHVHUYDWLRQ EHQHÀW RU KDUP" -$0$ 7KH -RXUQDO RI WKH $PHULFDQ 0HGLFDO $VVRFLDWLRQ Many of the ethical dilemmas faced by medical students on 274(10), 826-829. short-term electives may be mitigated by building long-term for International Organisations of Medical Sciences and the World Health partnerships between medical schools and host institutions, with Council Organisation. (2002). International ethical guidelines for biomedical research the goal of mutual education, training, and capacity building. involving human subjects. Geneva: CIOMS, WHO.

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Perspectives Chase, J. A., & Evert, J. (2011) Global Health Training in Graduate Medical Education: A Guidebook, 2nd Edition. San Francisco: Global Health Education Consortium. Crump, J. A., & Sugarman, J. (2008). Ethical considerations for short-term experiences by trainees in global health. JAMA : The Journal of the American Medical $VVRFLDWLRQ

Izadnegahdar, R., Correia, S., Ohata, B., Kittler, A., ter Kuile, S., Vaillancourt, S., & Brewer, T. F. (2008). Global health in Canadian medical education: Current practices and opportunities. Academic Medicine : Journal of the Association of American Medical Colleges, 83(2), 192-198. McKinley, D. W., Williams, S. R., Norcini, J. J., & Anderson, M. B. (2008). International exchange programs and U.S. medical schools. Academic Medicine : Journal RI WKH $VVRFLDWLRQ RI $PHULFDQ 0HGLFDO &ROOHJHV 6

Crump, J. A., Sugarman, J., & Working Group on Ethics Guidelines for Global Health Training (WEIGHT). (2010). Ethics and best practice guidelines for training experiences in global health. The American Journal of Tropical Medicine and Hygiene, 83(6), 1178-1182.

Mutchnick, I. S., Moyer, C. A., & Stern, D. T. (2003). Expanding the boundaries of medical education: Evidence for cross-cultural exchanges. Academic Medicine : -RXUQDO RI WKH $VVRFLDWLRQ RI $PHULFDQ 0HGLFDO &ROOHJHV 6

Drain, P. K., Holmes, K. K., Skeff, K. M., Hall, T. L., & Gardner, P. (2009). Global health training and international clinical rotations during residency: Current status, needs, and opportunities. Academic Medicine : Journal of the Association of AmeriFDQ 0HGLFDO &ROOHJHV (LQWHU] 5 0 .HOOH\ & 5 0DPOLQ - - 9DQ 5HNHQ ' ( 3DUWQHUVKLSV LQ international health. The Indiana University-Moi University experience. Infectious 'LVHDVH &OLQLFV RI 1RUWK $PHULFD Farmer, P., & Campos, N. G. (2004). Rethinking medical ethics: A view from below. Developing World Bioethics, 4(1), 17-41. *RVWLQ / 2 ,QIRUPHG FRQVHQW FXOWXUDO VHQVLWLYLW\ DQG UHVSHFW IRU SHUVRQV -$0$ 7KH -RXUQDO RI WKH $PHULFDQ 0HGLFDO $VVRFLDWLRQ Gupta, A. R., Wells, C. K., Horwitz, R. I., Bia, F. J., & Barry, M. (1999). The interQDWLRQDO KHDOWK SURJUDP 7KH Ă€IWHHQ \HDU H[SHULHQFH ZLWK <DOH 8QLYHUVLW\¡V LQWHUQDO medicine residency program. The American Journal of Tropical Medicine and Hygiene, 61(6), 1019-1023. Horton, R. (2000). North and South: bridging the information gap. The Lancet, Hyun, I. (2002). Waiver of informed consent, cultural sensitivity, and the problem of XQMXVW IDPLOLHV DQG WUDGLWLRQV 7KH +DVWLQJV &HQWHU 5HSRUW

Panosian, C., & Coates, T. J. (2006). The new medical “missionariesâ€?--grooming the next generation of global health workers. The New England Journal of MediFLQH Provenzano, A. M., Graber, L. K., Elansary, M., Khoshnood, K., Rastegar, A., & Barry, M. (2010). Short-term global health research projects by US medical students: Ethical challenges for partnerships. The American Journal of Tropical Medicine and Hygiene, 83(2), 211-214. 5DGVWRQH 6 - 3UDFWLVLQJ RQ WKH SRRU" KHDOWKFDUH ZRUNHUV¡ EHOLHIV DERXW the role of medical students during their elective. Journal of Medical Ethics, 31(2), 109-110. 5DPVH\ $ + +DT & *MHUGH & / 5RWKHQEHUJ ' &DUHHU LQĂ XHQFH of an international health experience during medical school. Family Medicine, 36(6), 412-416. Shah, S., & Wu, T. (2008). The medical student global health experience: ProfesVLRQDOLVP DQG HWKLFDO LPSOLFDWLRQV -RXUQDO RI 0HGLFDO (WKLFV Shaywitz, D. A., & Ausiello, D. A. (2002). Global health: A chance for western SK\VLFLDQV WR JLYH DQG UHFHLYH 7KH $PHULFDQ -RXUQDO RI 0HGLFLQH Yale School of Medicine. (2009). Visiting student elective program, global health: Yale school of medicine [internet]. Retrieved 11/2/2009, 2009, from http://medicine.yale.edu/globalhealth/international/index.html

Fighting Stigma: Lymphatic Filariasis Zaina Naeem University of Pennsylvania, Philadelphia, PA, USA Introduction Mosquitoes are everywhere, and millions of people fall victim to mosquito bites daily. While mosquito bites are generally harmless, for those who live in underdeveloped countries, these bites carry diseases that result in severe socioeconomic and physical subordination (Wynd et al., 2007). People who contract Lymphatic Filariasis (LF), an infectious disease transmitted by mosquitoes, may experience grotesque enlargements of their affected body parts, which include the arms, the legs, and the genital areas. When such swelling occurs, the patient is said to have progressed to a stage of LF known as elephantiasis, a term designed for the elephant-like texture of the resulting skin (Evans, Gelband & Vlassot, 1993). ,Q WKH :RUOG +HDOWK 2UJDQL]DWLRQ FODVVLĂ€HG /) DV D SRWHQWLDOO\ UHFWLĂ€DEOH GLVHDVH 6LQFH WKHQ WKH :RUOG +HDOWK $Vsembly has called upon its member states to initiate drug pro-

grams to eliminate LF as a health problem (Wynd, Melrose, Durrheim, Carron & Gyapong, 2009). LF has been effectiveO\ FRQWUROOHG LQ HQGHPLF DUHDV LQ WKH 3DFLĂ€F WKH &DULEEHDQ and in China, but the disease still runs rampant in India, East Africa, and 80 tropical and sub-tropical countries. Approximately 120 million people are already infected with LF, and 40 million have advanced to elephantiasis (Evans et al., 1993;Íž Sudomo, Chayabejara, Duong, Hernandez, Wu & Bergquist, 2010;Íž Wynd et al., 2007). In these countries, medical access and hygiene measures do not adequately accommodate overpopulation (Wynd et al., 2007). Reforming the healthcare systems of these countries, contrary to popular belief, is not enough. Battling LF is an issue that requires a profound radicalization of human thought. However, before we can begin to examine what is implied by this “revolution of thought,â€? it is important to understand how LF is contracted and spread.

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Perspectives A Peek into the Biology of LF

LF is caused by a nematode, a long thin parasitic worm, ranging from 7-10 cm in length, that resides in the lymph channels of the infected person. The adult form, known DV PDFURĂ€ODULD PDWHV DQG UHOHDVHV PLOOLRQV RI ODUYD FDOOHG PLFURĂ€ODULDH PI LQWR WKH EORRGVWUHDP $KRUOX 'XQ\R Koram, Nkrumah, Aagaard-Hansen & Simonsen, 1999). Now mosquitoes become relevant. Mosquitoes serve as transmitting agents for LF. Several mosquito genera can transmit LF, but the most common is Wuchereria bancrofti. Other genera include Culex quinquefasciatus, which breeds in dormant water in urban villages, and Brugia malayi, which LV VRPHZKDW FRQĂ€QHG EHFDXVH LW UHTXLUHV IUHVKZDWHU SODQWV found in rural areas for growth of larvae (Evans et al., 1993). A female mosquito takes a blood meal when it bites a person who has mf circulating in his/her bloodstream. As it sucks blood, the female mosquito also ingests the mf. For 12 days, the mf progressively mature in the mosquito and enter the “infective stage.â€? At this point, when the mosquito takes another blood meal, the mosquito can now pass mf into another person’s bloodstream, thereby infecting the person (Evans et al., 1993). The mf continue to grow in the host’s bloodstream, and eventually migrate into the lymphatic system, ZKHUH WKH\ EORFN WKH Ă RZ RI O\PSKDWLF Ă XLG 7KH EORFNDJH FDXVHV WKH Ă XLG WR GUDLQ LQWR WKH H[WUHPLWLHV RI WKH ERG\ XVXally the legs and feet, where phenotypic changes in the skin become apparent. These changes depend directly on the activity of the worms, and the consequential blockage in the lymph nodes (Burril, Loutan, Kumaraswami & Vijayasekaran, 1996).

The Physical & Socioeconomic Impacts

“As the severity of the disease becomes more apparent, social and economic stigma follow suit.â€? Most patients with LF tend to experience skin fold thickening and pigmentary changes to their skin. In these instances, the infected skin hardens and develops small bumps, such that even pressing cannot dent the skin. Furthermore, due to the dryness of the skin, soaking the patients’ skin in water does not relieve the painful cracks that soon develop (Burril et al., 1996;Íž Evans et al., 1993). Along with skin changes in the early stages of LF, infected persons also have to battle other infections. The lymphatic system is vital to the elimination of pathogens, and a blockage of the system causes an onset of secondary diseases that make it even more difĂ€FXOW IRU SDWLHQWV WR OLYH D QRUPDO OLIHVW\OH %XUULO HW DO Swelling of body parts is a consequence of LF. 7KRVH ZKR KDYH VZROOHQ WRHV Ă€QG LW QHDUO\ LPSRVVLEOH WR wear shoes, which are vital for protection against the outside environment. An infected Haitian woman expressed her despair: “When I need to go to school for them [my children] I can’t wear my shoes, and they wouldn’t want

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me to go out looking any old wayâ€? (Coreil, Mayard, Louis-Charles & Addiss, 1998). The lack of shoes increases the chances of the patient’s suffering from a secondary LQIHFWLRQ 6SHFLĂ€FDOO\ WKH VZHOOLQJ RI WKH WRHV LV DFFRPpanied with the tightening of skin cells, which facilitates further growth of bacteria and fungi. Because the toes have been greatly enlarged at this point, it is difĂ€FXOW WR SU\ LQGLYLGXDO WRHV DSDUW IRU UHPRYDO RI EDFteria. In this way, infected persons become breeding grounds for further diseases (Burril et al., 1996). The trauma of LF patients does not end here. Those who continue to experience progressive swelling are declared to have elephantiasis and are in for a life of painful disability. As the severity of the disease becomes more apparent, social and economic stigma follow suit. Most females in India, East Africa, and Haiti, for example, are expected to nurture children (Wynd et al., 2007). However, young, unmarried women with LF are unable to abide by the standards set by society, due to limited marriage prospects (Wynd et al., 2009). In Thailand and West Africa, there is a common perception that children born to LF-infected women will also inherit the genes for the disease (Wynd et al., 2009). There are also VLJQLĂ€FDQW HFRQRPLF LPSOLFDWLRQV WKDW HQIRUFH WKH LPDJH RI these infected LF women’s being poor marriage prospects. In fact, a study on infected Haitian women by Coreil and colleagues found that many women were unable to “harvest the garden produce because [one] has to stand to do it.â€? 7KHVH ZRPHQ WKXV VWUXJJOH WR Ă€QG D SDUWQHU DQG DQ LGHQWLW\ LQ +DLWL DQG FRDVWDO *KDQD ZKHUH Ă€QDQFLDO FRQWULEXWLRQV WR the family are essential aspects of social culture (Coreil et al., 1998). It is this very fear of an economic burden and of increased attention to their infected state that render many women reluctant to seek treatment, even if they have desires for such treatment. Coreil and colleagues reported one family member’s sentiment: “You’ve lived with it this long, why do you need this treatment so far away?â€? Another woman expressed her despair: “I ask for death because it makes me very sick. I’ve been suffering with this for 33 years.â€? Men with LF share similar sentiments, especially in regards to marriage and employment problems (Wynd et al., 0DOH VH[XDO GLVDELOLW\ KDV QRW EHHQ VLJQLĂ€FDQWO\ VWXGied, but even so, it is believed that young men with hydrocele, another form of LF, struggle to “establish their sexual identity and their capacity to be reliable economic providersâ€? (Coreil et al., 1998). In South America, for example, researchers discovered that many marriages lacked sexual activity due to the painful intercourse resulting from LF (Wynd et al., 2009). In Tanzania and Haiti, for example, men in the advanced stages of LF are considered socially “unacceptableâ€? to the rest of society due to their inability to produce a child (Evans et al., 1993). Infected men and women are thus unable to and sometimes prohibited from selling garden produce in the market by the rest of society, and therefore cannot contribute to the household economy (Coreil et al., 1998). This exclusion leaves these individuals seemingly helpless, with few options to alleviate their social and economic distress.

Perspectives Treatment & Prevention

fective methods of control. Lymphoedema, which also reWhat can be done to ease and prevent cases of LF? VXOWV LQ LQĂ DPPDWLRQ RI WKH ORZHU OLPEV KDV EHHQ VWXGLHG 0HGLFDOO\ GLDJQRVLV RI WKH GLVHDVH LV WKH Ă€UVW LPSRU- extensively in Brazil, Haiti, and India, and can be treated by tant step. Regardless of whether the patient is asymp- careful practice of hygiene. The World Health Organization tomatic or symptomatic, a LF patient will have func- recommends that infected individuals wash their affected tional abnormalities with the lymphatic vessels (Addiss & body part with soap and water twice daily, keep their nails 'UH\HU ,QIHFWLRQ FDQ EH FRQĂ€UPHG E\ XVLQJ D PL- clean, wear shoes if possible, and use local antibiotic creams croscope to examine a slide of dried blood from the po- to treat small wounds that may appear (Wynd et al., 2009). Hygiene is the most endorsed method of treatment and WHQWLDO /) SDWLHQW IRU PLFURĂ€ODULD $ PRUH VHQVLWLYH PHWKprevention. In the case of lymphoedema, for example, the od involves tracking the movement of the adult worm practice is so effective that the swelling can actually disapin an ultrasound examination (Addiss & Dreyer, 2000). pear completely. This is because the lymphatic channels If the worm is alive and traveling in the blood stream to the KDYH WKH DELOLW\ WR UHHVWDEOLVK O\PSK Ă RZ LI WKH O\PSKDWLF lymph nodes, the test is considered positive, and the perchannels are kept free from secondary infection (Wynd et son is declared to have LF. The same concepts hold true DO +RZHYHU WKH GLIĂ€FXOW\ OLHV LQ WKH IDFW WKDW PDQ\ for the DNA test, where the test is deemed positive if there are genes from the active worm present in the bloodstream. of these underdeveloped communities do not even have Since LF does not have a permanent cure, most medical VXIĂ€FLHQW ZDWHU IRU GULQNLQJ OHW DORQH IRU K\JLHQH SXURIĂ€FLDOV EHOLHYH WKDW SUHYHQWLRQ DQG IRUPV RI WHPSRUDU\ poses. In African countries, for example, two out of every treatment are the best methods. Diethylcarbamazine (DEC) Ă€YH SHRSOH ODFN VDIH GULQNLQJ ZDWHU %XUULO HW DO 6Xis a drug that is considered one of the top options (Ad- domo et al., 2010;Íž Wynd et al., 2009). In addition, more diss & Dreyer, 2000). DEC has not been shown to reverse WKDQ ELOOLRQ SHRSOH LQ WKH ZRUOG DUH VXIIHULQJ IURP existing lymphatic damage, but it prevents further worm- parasitic infections such as LF, which can be controlled by associated damage. to the lympatic system. In essence, the improved hygiene. This lack of hygiene and infrastructure, GUXJ FOHDUV WKH SDWLHQW¡V EORRG RI PLFURĂ€ODULD WKHUHE\ UH- combined with the spread of W. bancrofti mosquitoes in ducing the opportunity for mosquitoes to further trans- Haiti and other underdeveloped countries across the globe, mit the infection to other people (Evans et al., 1993). puts LF patients in a critical position (Evans et al., 1993). These modes of treatment and prevention are limited to the areas where the WHO has already established organized programs (Addiss & Dreyer, 2000). Consequently, most PHGLFDO RIĂ€FLDOV EHOLHYH WKDW HGXFDWLRQ LV D SUHUHTXLVLWH IRU effective prevention methods (Evans et al., 1993;Íž Wynd et al., 2007). Prevalent misconceptions of LF need to be tackled in order to control the spread of the disease. In studies conducted in the Philippines, Ghana, Haiti, and India, many communities believed incorrectly that LF is spread via 5HWHVWLQJ WKH SDWLHQW IRU PLFURĂ€ODULD DIWHU WKH WUHDWPHQW excessive physical stress and work, overdrinking of palmhelps assess the effectiveness of the drug. If the patient wine, and a very active sexual life (Ahorlu et al., 1999). VWLOO H[KLELWV PLFURĂ€ODULD SRVLWLYH UHVXOWV WKH '(& WUHDWIn a study conducted by Haliza and colleagues, only nine ment is repeated every 6-12 months. If the patient does of 108 respondents in Malaysia knew that LF is transmitnot exhibit signs of the live adult worm in the bloodted by mosquito bites (Evans et al., 1993). They attributed stream, the patient may opt to proceed with surgery. LF to walking barefoot on dirty ground and consuming Overall, DEC has proved to be quite effective according contaminated food and drinks. In addition, Evans and colto reports from villages in Haiti, Brazil and India, and is leagues reported that residents who were more knowledgetherefore a likely foundation of the global effort to elimiable about the cause and transmission of LF took greater nate LF (Addiss & Dreyer, 2000;Íž Global Alliance to Elimiprecautions in personal hygiene, essential for the prevention nate Lymphatic Filariasis, 2010;Íž Sudomo et al., 2010). of LF. Even though some countries such as the People’s Along with DEC, doctors usually recommend speRepublic of China are experiencing a rise in public awareFLĂ€F FRXUVHV RI DFWLRQ GHSHQGLQJ RQ WKH VHYHULW\ RI /) ness of LF, other developing countries have only recently For example, acute dermatolymphangioadenitis (ADLA) located the foci of their endemic areas and have yet to begin patients experience recurrent bacterial infections in the raising public awareness of LF (Wynd et al., 2009). With lower limbs. Recurrent ADLA usually results in elephangreater health literacy and awareness of LF comes an intiasis, and the prevention of ADLA is key to preventing creased understanding of how to prevent LF, a greater the development of elephantiasis. Cold compresses, rest, concern for one’s chances of getting LF, and an increased and antibiotic therapy of the bacteria have served as eflikelihood of seeking preventative health care services.

“More than 1.5 billion people in the world are suffering from parasitic infections such as LF, which can be controlled by improved hygiene.�

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JGH t Volume 1 t Issue 1 t Spring 2011

Perspectives Where We Step In‌

ment programs in endemic areas, and give the 120 million people infected with LF a chance to be treated for their illness. In addition, attempts to raise awareness on LF give inhabitants of endemic areas a chance to better understand how LF can be prevented and treated. And once the misconceptions are corrected, as seen in Tanzania and the Philippines, the citizens of these countries may be empowered to take better care of their hygiene and well being (Evans et al., 1993).

“Those who have LF are often excluded from society due to a dichotomy that exists between “usâ€? (the uninfected) and “themâ€? (the infected).â€? It is essential that we embrace an open mind when we encounter disability, and relay tolerance to others. Those who have LF are often excluded from society due to a dichotomy that exists between “usâ€? (the uninfected) and “themâ€? (the infected). These labels cause those who suffer from LF to fall to the bottom rung of the social ladder, contributing to a sense of subjugation and subordination. When most people encounter a description of LF or meet an individual with LF, they may tend to cringe back in horror and feel a sense of relief for not being infected. Coreil and colleagues describe how LF patients “received glancesâ€? and were subjected to rude remarks about their infected arms. The disgust and alienation that these patients received contributes to a striking decrease in their self-esteem. In fact, one women reported that she “hopes to dieâ€? because she has been living with the disease for such a long period of time (Coreil et al., 1998). It is this general attitude that needs to be upturned in order to truly combat LF and its implications. We have to realize that those who suffer from disabling and deforming diseases are humans too. They deserve to be integrated into the everyday activities of society. There LV QR UHDVRQ ZK\ SHRSOH H[SHULHQFLQJ LQĂ DPPDWLRQ GXH to LF should be shunned from the school and work community, or be considered useless and a burden on society. We need to talk and listen to organizations and individuals connected with LF, and decrease the schism that exists between these individuals and the rest of society. We unconsciously endorse “inclusive exclusion,â€? a phrase that reveals the “dual natureâ€? of combating LF. On one hand, we attempt to help LF patients by improving their physical health through medical preventions, but on the other hand, our mindset still remains somewhat dehumanizing as we see these people who live so differently from us. According to the World Health Organization, more than 120 million people are presently infected by lymphatic Ă€ODULDVLV DQG DSSUR[LPDWHO\ PLOOLRQ DUH ´GLVĂ€JXUHG DQG incapacitatedâ€? by the disease (WHO, 2011). The more we educate ourselves and others about LF, the more we allow health providers to understand the importance of combating this disease (Wynd et al., 2009). We have the potential to increase public willingness to seek necessary preventative health measures against LF. Students, staff, and teachHUV FDQ EHJLQ WR IRUP QRQ SURĂ€W RUJDQL]DWLRQV DQG FOXEV centered on fundraising for LF treatment and research. The money, resources and time we spend on this particular cause can potentially allow WHO to expand LF treatJGH t Volume 1 t Issue 1 t Spring 2011

References Addiss, D.G., & Dreyer G. (2000). Treatment of Lymphatic Filariasis. Lymphatic )LODULDVLV FK Ahorlu C.K., Dunyo S.K., Koram K.A., Nkrumah F.K., Aagaard-Hansen J., 6LPRQVHQ 3 ( /\PSKDWLF Ă€ODULDVLV UHODWHG SHUFHSWLRQV DQG SUDFWLFHV RQ the coast of Ghana: implications for prevention and control. Acta Tropica. 73(3), Burril, H., Loutan L., Kumaraswami V., Vijayasekaran, V. (1996). Skin changes in FKURQLF O\PSKDWLF Ă€ODULDVLV 7UDQVDFWLRQV RI WKH 5R\DO 6RFLHW\ RI 7URSLFDO 0HGLcine and Hygiene. 90(6), 671-674. Coreil, J., Mayard, G., Louis-Charles, K., Addiss, D. (1998). Filarial elephantiasis among Haitian women: social context and behavioural factors in treatment. Tropical Medicine & International Health. 3(6), 467-473. Evans, D.B., Gelband H., & Vlassot C. (1993). Social and economic factors and WKH FRQWURO RI O\PSKDWLF Ă€ODULDVLV D UHYLHZ $FWD 7URSLFD Global Alliance to Eliminate Lymphatic Filariasis. (2010). The Way Ahead. ReWULHYHG IURP KWWS ZZZ Ă€ODULDVLV RUJ SURJUHVV WKHBZD\BDKHDG KWPO Sudomo M., Chayabejara S., Duong S., Hernandez L., Wu W.P., & Bergquist R. (OLPLQDWLRQ RI O\PSKDWLF Ă€ODULDVLV LQ 6RXWKHDVW $VLD $GYDQFHV LQ 3DUDVLWRORJ\ :+2 /\PSKDWLF Ă€ODULDVLV 5HWULHYHG IURP ZZZ ZKR LQW PHGLDFHQWUH factsheets/fs102/en/ Wynd,S., Durrheim, D.N., Carron J., Selve B., Chaine J.P., Leggat, P.A., & Melrose, 3 $ 6RFLR FXOWXUDO LQVLJKWV DQG O\PSKDWLF Ă€ODULDVLV FRQWURO ² OHVVRQV IURP WKH 3DFLĂ€F )LODULD -RXUQDO Wynd, S., Melrose, W.D., Durrheim, D.N., Carron, J., & Gyapong, M. (2009). 8QGHUVWDQGLQJ WKH FRPPXQLW\ LPSDFW RI O\PSKDWLF Ă€ODULDVLV D UHYLHZ RI WKH sociocultural literature. World Health Organization.

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Perspectives

What is Global Health? 1

Oliver-James Dyar1, 2 and Ayesha de Costa1 Division of Global Health, Nobels Väg 9, Karolinska Institutet, 171 77 Stockholm, Sweden. 2 University of Oxford, Oxford, U.K.

Global Health As a Term

health, and tropical medicine lie. Depending on the source, WKHVH Ă€HOGV KDYH EHHQ GHVFULEHG DV RYHUODSSLQJ ZLWK VHSDUDWH The rise to prominence of the term “global healthâ€? has from, or entirely subsumed in global health (Fried et al., 2010;Íž occurred in parallel with the popularization of globalization, an Koplan et al., 2009). Currently, there is not yet an agreement enhanced awareness of common vulnerabilities, and a feeling RQ ZKDW LI DQ\WKLQJ VHSDUDWHV JOREDO KHDOWK IURP WKHVH Ă€HOGV of increased shared responsibility for inequities present in the One approach for understanding why such apparent world today (Macfarlane, Jacobs, & Kaaya, 2008). For instance, ambiguities exist would be to examine the contexts in which let’s consider escalating health threats posed by climate change. “global healthâ€? is typically encountered. Macfarlane and colBy recognizing the role of globalization in driving greenhouse leagues (2008) found that 87% of articles written by authors gas emissions, we realize how greenhouse gas emissions may ZLWK DQ DFDGHPLF JOREDO KHDOWK DIĂ€OLDWLRQ ZHUH IURP 1RUWK impact population health not just in one region, but globally. $PHULFDQ LQVWLWXWLRQV 2QO\ WZR DUWLFOHV HTXDWLQJ WR We come to recognize how efforts to combat these issues will of the total number examined by Macfarlane et al. (2008) require substantial international collaboration. Within aca- were from institutions in low and middle-income countries. demia, these processes have produced a rise in the usage of the ,Q WKHUH ZHUH VXIĂ€FLHQWO\ PDQ\ (XURSHDQ UHVHDUFK LQterm “global healthâ€? (Macfarlane et al., 2008). Public health stitutions concerned with global health issues to warrant the students today are more eager and feel better equipped to tack- creation of the European Academic Global Health Alliance le the issues that global health is typically associated with. The (Haines, Flahault, & Horton, 2011), which serves to promote evidence base for solutions has grown, and technological ad- collaboration between global health research institutions in vances have facilitated easier collaboration between countries. Europe and to develop a European voice on global health Ilona Kickbush (2006) is the director of the Global Health issues. Beyond academia, the World Health Organization reProgramme at the Graduate Institute of International and ported in 2009 that over 100 global health initiatives or partDevelopment Studies in Geneva, Switzerland, and she con- nerships had come into existence (World Health Organization tends that global health refers to “health issues that transcend Maximizing Positive Synergies Collaborative Group, 2009). national boundaries and governments and call for actions on The diverse range of contexts in which the term is found the global forces that determine the health of people.â€? Ko- emphasizes how interdisciplinary and multidimensional global plan and colleagues (2009) offer a different perspective and health has become (Haines et al., 2011). The pace and ease with suggest that global health is “an area for study, research, and which this sense of familiarity has occurred, combined with a practice that places a priority on improving health and achiev- ODFN RI D FOHDU GHĂ€QLWLRQ IURP WKH RXWVHW KDV UHVXOWHG LQ D VLWXing health equity for all people worldwide.â€? In addition, ation in which the interpretation of the term “global healthâ€? Beaglehole and Bonita’s (2010) publication favor a shorter varies based upon the perspective of the individual framing GHĂ€QLWLRQ ´FROODERUDWLYH LQWHUQDWLRQDO UHVHDUFK DQG DFWLRQ the context. For an academic, it may bring to mind broad infor promoting health for all.â€? The viewpoint of Ilona Kick- ternational determinants for health, whereas for another perbush suggests that global health refers only to problems that son, it may be more about the threat of individual diseases cross national boundaries or governments, whereas Koplan et such as tuberculosis and malaria. Kickbush has argued that al.’s (2009) paper and Beaglehole and Bonita’s (2010) article WKLV KDV UHVXOWHG LQ JOREDO KHDOWK EHFRPLQJ ´D Ă€HOG RI DFWLRQ do not impose this geographical limit. Whilst Koplan and where there is no common sense of purpose or directionâ€? colleagues and Beaglehole and Bonita explicitly state a goal (Friends of Europe Development Policy Forum, 2010). This ÂśKHDOWK IRU DOO¡ RQO\ WKH IRUPHU VXJJHVWV WKDW WKLV VKRXOG EH lack of clarity and coherence may contribute to the confusion DFKLHYHG LQ DQ HTXLWDEOH PDQQHU :KDW PD\ DSSHDU DW Ă€UVW WR found by producers of the recent PBS television documentary EH WULYLDO GLIIHUHQFHV XSRQ GHHSHU H[DPLQDWLRQ UHĂ HFWV GLIIHU- “Rx for Survivalâ€? while attempting to identify public percepent perspectives on both the scope of the issues that global tions of global health (Harrar, 2008). Through focus groups, health should address and the ways in which it should do so. they found that people consider anthrax and bio-terrorism to Discussions on this theme have often entailed establishing be global health issues, but malaria and TB to be problems of where the boundaries between global health and pre- WKH SDVW WKH\ UHPDUN RQ WKH GLIĂ€FXOW\ WKH\ VXEVHTXHQWO\ KDG existing disciplines such as international health, public LQ Ă€QGLQJ ZD\V WR ´GHĂ€QHÂľ JOREDO KHDOWK IRU WKHLU DXGLHQFH 31

JGH t Volume 1 t Issue 1 t Spring 2011

Perspectives Why is This Important? The lack of consensus as to what “global healthâ€? means poses a number of important problems, both for the present and for future generations. Koplan and colleagues (2009) VXJJHVW WKDW WKH GLVDJUHHPHQW LQ GHĂ€QLWLRQ PD\ UHSUHVHQW D lack of harmony in the aims of global health and what the objectives of global health research should be. Consider a lack of uniformity found in global health training programs and how, for graduates of such programs, the career pathways are less clear and consistent than those in related disciplines such as public health. In the United Kingdom, for example, doctors may choose to specialize in public health in the same way they might train in cardiothoracic surgery or psychiatry. There currently exists no such equivalent for global health. A lack of consensus on aims means that it is hard to make appropriate comparisons between the increasing numbers of benchmarks that are used. How do we compare and prioritize between efforts to increase the resilience of vulnerable populations to climate change with efforts to reduce irrational antibiotic use so as to prevent resistance from developing? This problem is partly due to the quantitative methods available in global health, and how stakeholders place differential emphasis on different “values,â€? depending on their EDFNJURXQG )LQDOO\ ZLWKRXW D FOHDU GHĂ€QLWLRQ LW LV DOO WRR easy for a short phrase like “global healthâ€? to obscure important and real differences in our thinking (Koplan et al., 2009). If we remain apathetic as to how it’s used, its use will increasLQJO\ EH WDLORUHG WR Ă€W WKH QHHGV RI LWV XVHU LQ DQ\ JLYHQ VLWXDWLRQ A further issue highlighted by Macfarlane et al.’s (2008) publication is that the institutions of high-income countries IUHTXHQWO\ GHĂ€QH JOREDO KHDOWK LQ WHUPV RI WKHLU ZRUNLQJ UHODtionships with low and middle-income countries;Íž it seems that JOREDO KHDOWK SUREOHPV DUH LGHQWLĂ€HG DQG DGGUHVVHG WKURXJK the lens of industrialized countries. An examination of recent GHĂ€QLWLRQV RI ´JOREDO KHDOWKÂľ LQ WKH OLWHUDWXUH VKRZV WKDW WKH\ are overwhelmingly written by authors from institutions in high-income countries (Beaglehole & Bonita, 2010;Íž Koplan et al., 2009). If we continue to neglect input from low and middle-income countries in terms of global health research and discourse, we run the risk of making “global healthâ€? based on the perspectives of the industrialized world without considering the perspectives of the countries and populations from where many global health problems currently arise. Therefore, LW VHHPV OLNH ZH DUH WU\LQJ WR GHĂ€QH JOREDO KHDOWK GHYHORS “global healthâ€? initiatives, and engage in “global healthâ€? research without being global in our approach. We’re seemingly undermining one of the core principles to which those involved in global health aspire: that the relationship between ULFKHU DQG SRRUHU FRXQWULHV VKRXOG EH PXWXDO D WZR ZD\ Ă RZ in which all are considered equally valuable partners in addressing health issues worldwide. Instead, we perpetuate and lend credence to the contrary- that we are not equal partners.

ting to the needs of all stakeholders. The sense of cohesion that may emerge has the potential to aid those involved in global health practice and research and help the public to engage with and understand the vision underlying our approaches. It may be WKDW ZH FDQQRW GHYHORS D VLQJOH GHĂ€QLWLRQ RI JOREDO KHDOWK RU agree upon its aims and principles. But nonetheless it is better to come to a consensus on this, than to lack any form of consensus. It is important to engage in discussion and debate on the issues presented here. As students of global health at the Karolinska Institutet, we are planning a project that aims to prompt SHRSOH WR UHĂ HFW RQ WKHVH LGHDV DQG HQFRXUDJH IXUWKHU DFWLRQ WR be taken. The aim of our project is to assess perceptions of individuals from all over the globe who identify themselves as studying or working in global health. By analyzing the responses to our questionnaire, we can perhaps obtain a more complete answer to the question posed in the title of this piece: what is global health?

References Beaglehole, R., & Bonita, R. (2010). What is global health? Global Health Action. Fried, L.P., Bentley, M.E., Buekens, P., Burke, D.S., Frenk, J.J., Klag, M.J., & Spencer, + & *OREDO KHDOWK LV SXEOLF KHDOWK /DQFHW Friends of Europe Development Policy Forum discussion paper in partnership with Europe’s World (2010). Creating a global health policy worthy of the name. Retrieved from: http://www.friendsofeurope.org/Portals/13/Documents/ReSRUWV '3)B5HSRUWB*OREDOB+HDOWKB SGI Haines, A., Flahault, A., & Horton, R. (2011) European academic institutions for JOREDO KHDOWK /DQFHW +DUUDU / &RPPHQWDU\ 'HĂ€QLWLRQV RI JOREDO KHDOWK WKH 3%6 VHULHV Âś5[ IRU 6XUYLYDO¡ ÂśV DSSURDFK -RXUQDO RI 3XEOLF +HDOWK 3ROLF\ Kickbush, I. (2006). The need for a European strategy on global health. ScandinaYLDQ -RXUQDO RI 3XEOLF +HDOWK ² Koplan, J.P., Bond, T.C., Merson, M.H., Reddy, K.S., Rodriguez, M.H., Sewankambo, N.K., & Wasserheit, J.N. (2009). Consortium of Universities for Global +HDOWK ([HFXWLYH %RDUG 7RZDUGV D FRPPRQ GHĂ€QLWLRQ RI JOREDO KHDOWK /DQFHW Macfarlane, S.B., Jacobs, M., & Kaaya E.E. (2008). In the name of global health: trends in academic institutions. Journal of Public Health Policy, 29(4),383-401. World Health Organization Maximizing Positive Synergies Collaborative Group. (2009). An assessment of interactions between global health initiatives and country health systems. Lancet, 373(9681), 2137-2169.

What Can Be Done? :H FDQ UHà HFW RQ SURJUHVV PDGH LQ WKH HPHUJLQJ ÀHOG RI global health and together seek a more coherent sense of purpose and direction for the future. If we can do this through DQ HTXLWDEOH DSSURDFK WKHQ WKH UHVXOW LWVHOI PD\ EH PRUH ÀW JGH t Volume 1 t Issue 1 t Spring 2011

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Spotlight

Spotlight on Fukushima: The Aftermath Interview with Norman J. Kleiman, Ph.D Mailman School of Public Health, Columbia University Credit: JGH

Norman J. Kleiman, Ph.D. is a faculty member at Columbia University’s Mailman School of Public Health, Director of Columbia University’s Eye Radiation and Environmental Research Laboratory, and the U.S. Director of the Ukranian American Chernobyl Ocular Study (UACOS). Dr. Kleiman’s research uses the human eye as a model system to study the effect of ionizing radiation and environmental exposures on human health. Following the March 2011 earthquake in Japan, Dr. Kleiman has been frequently asked to discuss the consequences of the radiation leak from the Fukushima nuclear plant and has been featured in various publications and media outlets including Science, PBS, and MSNBC. In past interviews, Dr. Kleiman has offered some stirring and thought-provoking insight on the health consequences of radiation exposure at Fukushima, and he has interestingly warned against overstressing the risks posed by the radiation leak. In mid-April 2011, Columbia University student Kevin Xu of The Journal of Global Health FDXJKW XS ZLWK 'U .OHLPDQ DW KLV RIÀFH during a brief break in his busy schedule. In the edited transcript below, Dr. Kleiman shares his perspectives on the public health consequences of the spread of radiation in Japan.

JGH: -DSDQ KDV D ORQJ KLVWRU\ RI VHLVPLF DFWLYLW\ ,WV QXFOHDU LQdustry is also amongst the most sophisticated and wellGHYHORSHG LQ WKH ZRUOG 2Q 0DUFK WKH GD\ RI WKH earthquake, numerous members of the media suggested WKDW ´-DSDQ ZDV ZHOO SUHSDUHG µ +RZHYHU VLQFH 0DUFK 11, we have been witnessing what seems to be an unfoldLQJ QXFOHDU FULVLV LQ -DSDQ +DV WKLV VWUXFN \RX E\ VXUSULVH"

'U .OHLPDQ No, a degree of uncertainty in dealing with an unexpected event is normal. From a scientist’s perspective, it is RXU MRE WR WU\ WR JHW WR WKH KHDUW RI WKH PDWWHU ÀJXUH RXW what are the facts coming out, and assess the reliability of these facts. In any developing event, whether it is the JaSDQ HDUWKTXDNH &KHUQRE\O WZHQW\ ÀYH \HDUV HDUOLHU RU Three Mile Island before that, initial reports are initial reports. It is incumbent upon scientists help provide the sciHQWLÀF HYLGHQFH DQG WKHLU LQWHUSUHWDWLRQ ZLOO KHOS JXLGH SROLF\ PDNHUV DQG JRYHUQPHQW RIÀFLDOV LQ WKHLU UHVSRQVHV As facts emerge, and as sources like the International Atomic Energy Agency and the Japanese government’s nuclear UHJXODWRU\ DJHQF\ UHOHDVH GDWD ZH FDQ HYDOXDWH WKH ÀQGLQJV and better identify the health risks to different populations. 33

JGH: 7KLV SDVW ZHHN WRQV RI ORZ OHYHO UDGLRDFWLYH ZDWHU ZDV UHOHDVHG LQWR WKH RFHDQ Do you think this was the right move?

'U .OHLPDQ That’s a good question. Like many environmental hazards, we can’t say that a particular dose is absolutely safe and another dose is absolutely unsafe. For radioactivity, it is our belief that there is no safe level of radioactivity below which the risk of cancer is zero, although the human epidemiologiFDO HYLGHQFH EHORZ D OHYHO RI DERXW P6Y LV TXLWH VSDUVH It is of concern to hear about a large amount of radioactivity that was released into the ocean. But from a factual perspective, we need to know more, for example, about what the particular radionuclides are. Different radionuclides have different half lives. Radioactive iodine has a half life of 8 days, and in 3 months, it is essentially at a negligible level. Radioactive cesium has a half life of 30 years, and cesium is much more of a long term issue. It is not simply enough to say that a great deal of radioactivity was released. We need to examine the type of radionuclides and their eventual presence in the food supply and in humans. JGH t Volume 1 t Issue 1 t Spring 2011

Spotlight The ocean is huge in volume. While Fukushima involved a very large amount of radioactivity that was released at the site of the plant and the levels of radioactivity at the site of the plant were enormous, as we move further away from the plant, even in terms of hundreds or thousands of meters, the concentrations drop dramatically. And at much greater distances from the plant, the concentrations in the ocean drop even more.

the long-term health outcomes and risks are. These are usually long-term, and in some cases, lifetime studies. In my area of research, which involves studying the relationship between ionizing radiation and cataract, there are important studies that came out only a few years ago on the A-bomb survivors in Hiroshima and Nagasaki.

,W LV WUXH WKDW ZH FDQ GHWHFW UDGLRDFWLYLW\ LQ ÀVK WKDW ZDV above current threshold limits in terms of human consumption. In response, the Japanese have new regulations in place IRU WKH DPRXQW RI UDGLRDFWLYLW\ WKDW FDQ EH FRQWDLQHG LQ ÀVK caught off the coast of Japan. However, these levels of radioactivity are set at a threshold several orders of magnitude EHORZ OHYHOV ZKHUH ZH VXVSHFW VLJQLÀFDQW KXPDQ KHDOWK ULVNV These levels of radioactivity are still very low overall, and ODUJH DPRXQWV RI WKHVH ÀVK ZRXOG QHHG WR EH FRQVXPHG WR pose a general health risk. At these low levels, it is very hard to establish a relationship between exposure and disease.

We also need to distinguish between nuclear workers who are working heroically at the plant right now and were exposed to relatively higher doses and the general population, which, by-and-large, has been evacuated and removed from areas of immediate exposure risk. Human health risks in these two different groups of people are quite different and each needs to be studied for a long period of time.

Think about it this way: The lifetime risk of all of us getting cancer is roughly 40%. The lifetime risk of all of XV G\LQJ IURP FDQFHU LV +\SRWKHWLFDOO\ LI ZH KDYH PLOOLRQ SHRSOH DUH JRLQJ WR GLH IURP FDQFHU If one or a few additional persons die from cancer because of exposure to a very low level of radioactivity, it is practically impossible to see this against the background RI QRQ UDGLDWLRQ UHODWHG FDQFHU GHDWKV 6R LW LV KDUG WR SURYH VFLHQWLÀFDOO\ WKDW WKRVH VPDOO GRVHV RI UDGLRDFWLYLW\ UHDOO\ SRVH D VLJQLÀFDQW ULVN WR KXPDQ KHDOWK JGH: What sort of health studies should be done in Japan to follow up on health effects of the Fukushima plant’s release of radiation on the Japanese population?

This type of monitoring can go on for a long period of time. Through these estimates, we can better understand the distribution of radioactive materials in the countryside, in the sea, air, and food supply.

'U .OHLPDQ Again, good question. This past week’s issue of Nature focuses on what should be done regarding the situation in Japan.

JGH: We’ve also been hearing about numerous countries implePHQWLQJ D EDQ RQ SURGXFWV IURP -DSDQ :KDW GR \RX WKLQN"

The key to doing good radiation research in human populations is good dosimetry, knowing the precise amount and kind of radioactivity to which individuals were exposed. Let’s consider Chernobyl;͞ it was a huge ecological, public health, KXPDQ DQG WHFKQRORJLFDO GLVDVWHU 8QIRUWXQDWHO\ VXIÀFLHQW time, resources, and money were not spent on getting accurate dosimetry in the population affected by Chernobyl, whether it be the individuals in the surrounding countryside or the cleanup workers. We do not have a good estimate of their exposures to radiation, and an opportunity was lost to apply knowledge gained from the Chernobyl disaster twenW\ ÀYH \HDUV DJR WR WKH FXUUHQW VLWXDWLRQ LQ -DSDQ LQ

'U .OHLPDQ There are regulatory guidelines within each country that say: “This is a safe level of radiation in food� or “this is an unsafe level of radiation in food.� These guidelines vary a bit from country to country. But in general, these guidelines are set so that the threshold levels of radioactivity are well below anything that would cause human health concern. Most guidelines are based on yearly consumption. So for example, the total amount of radioactivity that you are permitted to be exposed to over a year might be set to 1 mSv per year, and another guideline’s threshold (for a different NLQG RI H[SRVXUH FRXOG EH VHW WR P6Y SHU \HDU 6R XVing water as an example, via back-calculation based on avHUDJH LQWDNH RI ZDWHU SHU GD\ DQG D GD\ H[SRVXUH LI

These editorials and articles in Nature suggest that we need to get accurate dosimetry in the case of the Japan earthquake, we need to spend time, money and resources to understand the types of radionuclides at Fukushima, where the radionuclides have been going, what the levels are, what the SRWHQWLDO KXPDQ H[SRVXUHV PLJKW EH DQG ÀJXUH RXW ZKDW JGH t Volume 1 t Issue 1 t Spring 2011

As I said earlier, future research is dependent on good dosimetry. And more importantly, additional research on the human health risks from low-dose radiation exposure is desperately needed. The health authorities have set up radiation monitoring stations through the prefecture and throughout Japan, monitoring levels in the soil, in the water and in the food supply, and taking physical samples to look for the type and amount of radiation being dispersed. Individual nuclides have different biological effects. For instance, cesium accumulates in soft issue while iodine goes to the thyroid, where it can increase the risk of thyroid cancer. At present, cesium and iodine are the two radionuclides most pertinent to human health concerns. We are measuring radioactive incorporation in individuals, via measurements in human excretions, or by direct Geiger counter readings of radioactivity in the thyroid.

34

Spotlight you drink contaminated water at a given level for that long, you might exceed the regulatory guidelines’ threshold. That would pose a potential, long-term health risk to the population. So as a result, we wouldn’t allow food or water to be sold or consumed if it is above a particular level of radiation. Again, these are just regulatory guidelines. It does not indicate whether you’re going to get the disease or not.

The relative risk of dying of cancer from exposure to 100 mSv of radiation, which is a relatively large amount of radiation, much larger than the general population exposure at )XNXVKLPD LV RQ WKH RUGHU RI 6R LQ DGGLWLRQ WR WKH URXJKO\ ULVN RI DOO RI XV JHWWLQJ FDQFHU DQG ULVN RI DOO RI XV G\LQJ IURP FDQFHU OHW¡V DGG WKLV DGGLWLRQDO 7KLV DGGLWLRQDO FRPHV IURP D GRVH RI UDGLDWLRQ WKDW is thousands of times higher than what we’re dealing with at Fukushima. So the potential radiation risk increase at such ORZ OHYHOV RI UDGLDWLRQ LV YHU\ YHU\ VPDOO ,W LV YHU\ GLIĂ€FXOW to look at this low risk and compare it to, for example, the increased risk of getting gastric cancer associated with drinking more than 3 beers a day. There are many choices that we make in our daily lifestyles that expose us to much greater risk than that from these low levels of ionizing radiation. That said, it is still incumbent on the authorities to follow ALARA principles, to reduce risk to “As Low As Reasonably Achievableâ€?.

JGH: Historically speaking, it’s interesting to look at the public health responses to Chernobyl and Three Mile ,VODQG LQ OLJKW RI )XNXVKLPD &RXOG \RX H[SODLQ WKH VLPLlarities and differences among the Fukushima radiation leak, the Chernobyl accidents, and Three Mile Island?

'U .OHLPDQ The type of reactor at Chernobyl is a type of reactor that we do not currently use. No external containment structure was present at Chernobyl to prevent the release of radioactivity. At Chernobyl, there were two explosions that vaporized and ejected tons of highly radioactive material from the core of that reactor high into the atmosphere.

JGH: 7HOO XV DERXW WKH ZRUN WKDW \RX GR DW WKH 0DLOPDQ 6FKRRO

'U .OHLPDQ : I work at the intersection of ophthalmology, public health, and radiation research. I utilize the eye and the lens in particular as a model system to look at environmental exposures and the subsequent effect on our health.

The quantity of radioactivity material released at Fukushima is far, far lower than that at Chernobyl. So the public health risk is much lower because the amount of material released was much smaller. As opposed to Chernobyl, Three Mile Island was on the opposite end of the spectrum. The radiation at Three Mile Island was contained in the reactor’s containment structure, so there was little radioactive release, with the exception of a relatively small planned release of gas to reduce pressure in the vessel. We have an exquisite ability to measure radioactivity, and we can detect extremely low levels of radioactivity from Fukushima on the order of a few disintegrations per minute. Such low levels of radioactivLW\ GR QRW WUDQVODWH WR VLJQLĂ€FDQWO\ LQFUHDVHG KHDOWK ULVN JGH: Fukushima has brought the Indian Point nuclear plant outVLGH 1HZ <RUN &LW\ EDFN LQWR WKH VSRWOLJKW 'R \RX WKLQN LW¡V too big of a risk to remain open? How do you think Fukushima will affect new initiatives to develop nuclear power?

'U .OHLPDQ We are living in a world of risk: the water we drink, the food we eat, cigarette smoke, unsaturated fats, alcohol, and lifestyle choices. These all contribute to our lifetime risk for disease. We need to keep radiation risks in context. There is a disproportionate fear of radiation that needs to be evaluated and kept in perspective with respect to the other risks we face. I am not saying that we shouldn’t be respectful of ionizing radiation. But we need to view radiation with the same perspective as we view looking both ways when we cross the street, smoking a cigarette, drinking alcohol, and leading a sedentary lifestyle. 35

One of the prime environmental exposures that I study is ionizing radiation, but I am also interested in arsenic exposure as well as other potential DNA damaging, genotoxic events. We believe that the lens of the eye and the associated pathology of cataract is a good model for environmental exposure associated with DNA damage and misrepair, and that the pathomechanisms of radiation cataract are fundamentally similar to some of the molecular and cellular pathways associated with development of cancer in other tissues. Another area of my research revolves around the genetic basis of differential sensitivities to radiation. Hypothetically, if you had a hundred people with prostate cancer at the same stage and with the same treatments, ninety-nine might do well with radiotherapy and respond similarly. One will do poorly. Why? We believe that some individuals have particular genetic makeups that make them much more radiosensitive. Typically, these are genes involved with recognizing and repairing DNA damage and regulating progression through the cell cycle. Phenotypically, these individuals may appear normal but they may be more sensitive to radiation or chemotherapy and other enviURQPHQWDO JHQRWR[LQV ,I ZH FDQ ÀJXUH RXW ZKDW WKHVH JHQHV are and identify these people, we could then tailor their therapies to their genetic makeup, which would be of enormous EHQHÀW LQ WUHDWPHQW GLDJQRVLV DQG IXWXUH ULVN DVVHVVPHQW

JGH t Volume 1 t Issue 1 t Spring 2011

The Journal of Global Health 3430 Lerner Hall, Columbia University, 2920 Broadway, New York, NY 10027 USA www.ghjournal.org

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