The Experiment Must Continue. Melissa Graboyes
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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