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FIRST ENCOUNTERS, FIRST IMPRESSIONS

This chapter focuses on the chronological start of the medical research encounter by describing researchers’ initial arrival in a village. These narratives of elimination on Pate Island and Zanzibar point to a fundamental misunderstanding at the root of many “first encounters.” I look at how researchers arrived and introduced themselves to the communities, and at what information researchers shared with communities and how they shared it. I present detailed information about two historical attempts to eliminate lymphatic filariasis (LF) on Pate Island in the Lamu Archipelago, which was introduced in the preceding narrative, and on Ukara Island in Lake Victoria. I also discuss the modern attempt to eliminate LF in Zanzibar and eradicate it globally. The two historical campaigns had very different outcomes that allow us to ask a series of difficult questions: Did scientists purposefully misrepresent their work? Was it folly on the part of both sets of islanders to refuse the help of researchers who were trying to eliminate disease? What was the logic of turning down a seemingly low-risk medical intervention? Were the miscommunications and conflicts that plagued the programs on Pate Island and Zanzibar inevitable?

These case studies of failed elimination attempts and aborted arrivals make a few important points illustrated in the snapshot of Goiny’s five days on Pate Island. First, communities had far more ability to change projects—or end them entirely—than most colonial medical researchers were willing to recognize. Second, although the medical departments and research teams often pretended that their work went on in a historical and political vacuum, East Africans disagreed. Local residents saw the research project as fully enmeshed in recent history, local politics, and their ongoing interactions with the government. Science was neither special nor solitary. While researchers assumed they were making first impressions, community members often viewed their work as repeat performances of past public health and medical research incursions. The chapter begins with information about the disease lymphatic filariasis; details the differences between what was planned by the Department of Insect Borne Disease (DIBD) workers versus what they shared with Pate residents; looks at how science interacted with local perceptions of government and local history; and, finally, examines how the failed attempt in Pate compared with a very similar project on Ukara Island. I conclude by returning to the ongoing global campaign to eradicate lymphatic filariasis.

Filariasis

Lymphatic filariasis (Wuchereria bancrofti in East Africa) is a parasitic disease transmitted by Anopheles mosquitoes and which has long been found in the region.¹ Once a mosquito bites an infected person and ingests the parasite, the mosquito becomes a vector, able to transmit the disease to other humans through subsequent bites. The parasitic worms live and procreate inside the human body and produce millions of new microfilariae that lodge in the body’s lymphatic system. The lymphatic system regulates the fluid balance between tissues and blood, and damage to the system can cause swelling of the scrotum (hydrocele), or a swelling of the legs that results in thickening of the skin (elephantiasis). The disease is not typically fatal, and it takes many years—often decades—for a person to develop obvious symptoms. For a full depiction of the transmission cycle, see figure 3.1. Testing for filariasis requires blood samples (from either a vein or a finger prick) to be taken at night (typically after 10 pm), since it is only in the evening that the microfilariae become active in the peripheral blood; daytime blood tests produce false negatives.² The nocturnal periodicity of the microfilariae in the peripheral blood corresponds to the night biting habits of mosquitoes, timing that encourages transmission of the parasite. By 1956, when the campaign on Pate Island began, effective treatment in the form of DEC (diethylcarbamazine) was available.

FIGURE 3.1. Lymphatic filariasis disease lifecycle. Produced by Chris Becker.

In the 1950s, the medical community disagreed about how important a disease filariasis actually was, and how many resources should be devoted to fighting it. While the Kenya Medical Department plowed ahead with elimination plans, the mission of the more circumspect Filariasis Research Unit (FRU) was to establish the true effects of LF: in their words, to see if filariasis was “so great a threat to the welfare and economy of the peoples that it would be justifiable to recommend that large-scale programmes of control be initiated.”³ The difference in approaches between the more hands-on Medical Department and the more research-oriented FRU was pronounced enough to elicit derision. A 1956 annual report boasted that the DIBD (part of the Kenya Medical Department) does “not confine our activities to ‘counting the hairs in the hindquarters of mosquitoes.’ We do not spend all the time in the laboratories but venture into the open air.”⁴ What was partially a disagreement on how important and burdensome a disease LF was also highlighted the very different missions of the two organizations. The researchers at the FRU saw themselves as working slowly and methodically to question and test every assumption; the DIBD was concerned with achieving measurable improvements in public health through a decrease in vector-borne diseases such as LF, malaria, and river blindness.

Although there was widespread agreement about the cause and treatment of LF among the European medical community, most East Africans did not share the researchers’ understanding of the disease. Many communities considered filariasis to be two distinct diseases based on the two major symptoms—elephantiasis (matende) and hydrocele (mabushe).⁵ The diseases were typically attributed to the intervention of God or witchcraft, even when more direct causes such as contact with infected people were invoked. There is no evidence of the disease being locally understood as being spread by mosquitoes.⁶ On Pate Island, people believed elephantiasis was contracted from infected persons, although who came in contact, and thus got infected, was still the result of God or Allah’s will. On Ukara Island, many villagers considered it a disease of the ukoo (family/clan), running in families over generations.⁷ There is a certain logic to seeing the disease as genetic, or otherwise directly transferrable from person to person: people living in the same area tended to be affected, since they were all being bitten by the same infected mosquitoes. It was also unlikely for people to make the link with mosquitoes due to the many years of mosquito bites that were required before symptoms appeared. Local healers treated the conditions with roots or herbs, but there is no record of these treatments being effective.

On the East African disease landscape, both elephantiasis and hydrocele were clearly abnormalities, but they weren’t particularly debilitating ones. In many ways these two conditions of hydrocele (enlarged scrotum) or elephantiasis of the leg were common enough to “demand no explanation” and to be accepted as “natural.”⁸ Surely no one wanted these conditions, but, in the many places where LF was endemic, sufferers were often not considered to be diseased because they continued to function in society. A person’s ability to work, socialize, marry, and raise children kept the condition from being highly stigmatized and made it seem “normal” as judged by levels of functionality. Abnormality was often defined by being nonfunctional within a society. This acceptance of these conditions was so strong that among some western Tanzanian groups, a man with hydrocele was “respected for the size of his testicles,” and, along the Kenyan coast, some people believed hydrocele actually increased virility.⁹ This created a clear mismatch in the perceived importance of the disease, and whether it was considered worthy of public health attention. The European researchers were likely to refer to LF as a “curse” even though local communities seemed to consider it more like a common abnormality.¹⁰

What is also striking is how differently the disease was experienced in different parts of the country. In the late 1940s, the researcher Hope Trant was shocked to discover two very distinct responses to living with the disease. In Kyela in Southwestern Tanganyika, those with elephantiasis limped noticeably and complained loudly. On Ukara Island in Western Tanganyika, the Wakara who were infected continued hoeing fields and carrying compost, “only feeling sorry for themselves when their condition is being commented upon in a medical examination.”¹¹ It remains an open question how debilitating the disease actually was and how much it limited functionality in daily life. Local perceptions of the disease stress individuals’ physiological and social functionality: physically, people continued to participate in the labors of day-to-day life; socially, people were accepted by society. This acceptance of LF was true in the past and continues into the present. In the previous section’s modern case study from Zanzibar, people continued to function with the disease and still tended to prioritize other public health and medical concerns above LF.

Local understandings of filariasis are important for figuring out why the elimination attempt was so forcefully refused. In order for an elimination campaign (or any public health/medical research project) to have local support, people have to feel it is important and relevant. Filariasis was neither a deadly disease nor extremely debilitating or stigmatized; it was unlikely to be identified as a first choice for elimination by residents. Instead, people likely would have preferred researchers to focus on other—deadly—diseases such as smallpox or malaria, or provide a true public health service like reliable access to clean water. As the LF campaign was in progress, a note written in Arabic from Pate Island residents stated that “there is scarcely [sic] of water in our villages and due to our poor conditions we beg your assistance,” making a clear plea for water rather than activities targeting mosquito-borne diseases like lymphatic filariasis or malaria.¹²

Elimination: The Publicized and the (Secretly) Planned

Goiny arrived on Pate Island as a mid-level employee of the DIBD (a unit of the Kenya Medical Department), the plan of which was to eliminate filariasis on the island using a combination of entomological and medical methods. An entomological approach to elimination involves targeting and killing the mosquitoes that transmit the disease. If the mosquito population is reduced enough, transmission will cease even if humans remain infected. A medical approach targets parasites inside the human body, which is considered a reservoir of disease. When a majority of human infections have been treated and there are few microfilariae circulating in anyone’s blood, there is less worry about the number of mosquitoes. The department combined both strategies, targeting both the mosquito and its breeding sites, as well as the parasite inside the human body.

The DIBD spoke confidently to villagers about how they would achieve elimination, but they claimed that the attempt would only target mosquitoes. Islanders were only asked to agree to “the search for and collection of mosquitoes in all stages of development.”¹³ Yet this claim was at best half true. From the very beginning, the DIBD had planned to take human blood samples between 10:00 pm and midnight to determine levels of infection and then to “dose” nearly everyone on the island with a worm-killing drug for a period of years to eliminate the parasite’s human reservoir. Additional nocturnal blood testing would also be needed to make sure the drugs were working and overall levels of infection were decreasing. The medical work that targeted the parasite in the human body would be concurrent with the environmental modifications targeting mosquito habitats. Houses would be cleared of water storage containers that served as mosquito breeding sites, outdoor breeding sites would be destroyed, and the interiors of houses would be sprayed with DDT. The researchers openly admitted to each other that “searches in houses are bound to require the removal of some of the conglomeration of junk and dirt to be found in most homes . . . [and] the presently used water containers, tanks and drums . . . would all be ordered to be destroyed.”¹⁴ The level of “human” involvement in the project was expected to be large, but this was never discussed with the island’s residents.

In 1956, when Goiny arrived at Pate Island, LF had never been eliminated anywhere in the world.¹⁵ The research team knew that each of the proposed interventions—targeting humans, mosquitoes, and the environment—was crucial if elimination were to be even a possibility. They also knew that, even with an integrated approach, there was no guarantee of success. Despite knowing the experimental nature of their work, they concealed this information from residents, calculating that it would ease their way into the community. Our modern understanding of what is needed to eliminate a vector-borne disease like filariasis validates many of the techniques planned by the DIBD. Today, scientists are well aware of the threats of reinfection from mosquitoes or people entering from outside the treated area, declines in drug efficacy, and DDT resistance. But, although the DIBD had the correct scientific techniques and effective drugs, the project failed. The next section will explain the reasons why islanders refused to participate. Their rejection of the project and its ultimate failure had little to do with the efficacy of specific interventions, and much to do with how science, the researchers, and government were perceived.

Explaining Failures Comparatively

How do we explain the islanders’ staunch refusal to participate in the elimination attempt and the Kenyan colonial government’s quiet retreat from the island? Both defy easy explanation. It is worth comparing this to another historical attempt to eliminate LF, on Ukara Island in Western Tanzania. There, the Filariasis Research Unit engaged in field surveys and drug trials sporadically between 1951 and 1961.¹⁶ Their activities also failed to eliminate LF, but they did “succeed” at not being kicked off the island right after arriving. Ukara Islanders flocked to participate in the mass administration of anti-helminthic drugs and tolerated the regular presence of entomologists, parasitologists, and other scientists coming and going and asking for their participation in a variety of projects. There were two major differences between the campaigns that go a long way toward explaining the disparate outcomes on Ukara Island and Pate Island: first, the behaviors of researchers when they arrived and how well they integrated with the community; second, the history of past government interactions in the area. Although public opinion could always change, in many cases the initial relationships and interactions foretold either smooth or rocky relations in the future.¹⁷