Drug toxicity and cost as barriers to community participation in HAT control in the Democratic Republic of Congo

Abstract

Active case-finding programmes by mobile teams are the cornerstone of West African Human African Trypanosomiasis (HAT) control. Low attendance rates of screening and low uptake of treatment after diagnosis are major problems. The objectives of this survey were to explore community perception of HAT, to assess acceptability of control activities and to identify barriers amenable to intervention. In September 2004, we conducted 33 focus group discussions with beneficiaries of the HAT control programme among various ethnic groups in two ecological settings (savannah and fluvial) of the Democratic Republic of Congo. The population had a very detailed knowledge and understanding of HAT transmission, utility of screening, symptoms and treatment. Melarsoprol treatment was feared for its side effects. The sudden death of previously asymptomatic people during treatment was attributed to witchcraft, to which one becomes more vulnerable when the diagnosis is disclosed in public. Lack of confidentiality was also a problem because HAT carries a stigma as a mental disease. Lumbar punctures, especially when performed in public, were disliked but less feared. Financial barriers were a major obstacle for many patients. Less toxic drugs, lowering financial barriers and improving confidentiality would have considerable impact on the participation in population screening for HAT.