Treatment Taboos: Harmless or Harmful?

By Cicely Krebill, Biochemistry, 2019

Human African trypanosomiasis, also known as sleeping sickness, poses a risk to millions of people in sub-Saharan Africa. This disease, which is spread through bites by an infected tsetse fly, is very difficult to diagnose and treat, as it is hard to catch at the early stages due to a lack of distinct symptoms. By the time the symptoms are recognizable, the parasite has likely infected the central nervous system, increasing the probability of death. What is even more frightening is that even if caught, one treatment given for this disease, melarsoprol, has a high mortality rate: between 5 and 10 percent. Although a new combination treatment with a much lower mortality rate is on the rise, melarsoprol is still being used in many remote areas where resources are scarce.

Over the years, the World Health Organization (WHO) has launched campaigns to curb the number of sleeping sickness deaths by providing resources to diagnose and treat the disease to remote areas where sleeping sickness is endemic. Although these campaigns have had success and reported cases are on the decline, 70% of those cases in the past ten years have occurred in the Democratic Republic of Congo (DRC).

When researchers looked into this this unsuspected prevalence, they found something that healthcare workers in the area had known for a long time: a number of unexplained community-enforced prohibitions surrounding the treatment of sleeping sickness. These prohibitions, including no work, no sexual intercourse, no hot food, and no walking in the sun, for up to six months after treatment, seemingly developed out of thin air without a rational basis or definite origin.

These strictly enforced taboos are creating a major problem for healthcare workers who are trying to diagnose the disease.

Many people who believe they have sleeping sickness avoid getting tested or treatment for fear of having to adhere to these rules, which would prevent them from cultivating a steady income or living their lives. In essence, the treatment is viewed as more dangerous than the sickness.

This poses a threat to health care campaigns. Populations who are afraid of getting tested are at greater risk for death, and the ground that WHO and other organizations have made in their successful campaigns will be lost. Because of this, researchers in the area set out to interview current and former patients as well as healthcare providers and program managers in two provinces of the DRC that were not responding successfully to disease control campaigns to find out more about these prohibitions.

What they found was that these rules are deeply rooted in the communities’ history, stemming from a mixture of advice from previous healthcare providers, colonial rules, and cultural practices. They are further solidified as an explanation for the high mortality rate of the treatment, with the belief that patients that died while receiving treatment did so because they did not adhere to the regulations.

Even more surprisingly, healthcare providers were not discouraging these taboos so as not to put out conflicting information in the communities with the rationale that they were not harmful to the patient. However, it is now clear that they are causing harm in the affected communities. There is a debate as to whether or not the current taboos should be addressed, as the new treatment, which seems to lack the current stigma, is becoming more universally used. However the researchers make one thing clear: there needs to be dialogue between healthcare workers and the populations they work with to disseminate accurate, repeated, and widespread information on diseases and treatment options for their patients.