When people in West Africa started dying from Ebola, communities had no idea what was killing them. People resorted to rumors and allegations of foul play, such as the damaging claim that Westerners created the virus to combat population growth. This only exacerbated the problem and fueled stigma against those affected by the disease. It was a classic example of the fallout from weak public health institutions and a lack of education around the health threats that the region faced. Unfortunately, the problem is not limited to acute outbreaks like Ebola, or AIDS in the eighties. In many ways, we face similar challenges in the fight against tuberculosis (TB).
In part because TB is an ancient disease, advocates seem to assume everyone knows enough about it: how it is spread, the symptoms it causes, and how it is prevented, among other things. When advocates discuss “TB education,” they often talk in terms of stigma and institutional or cultural barriers to treatment. They ignore the fact that these problems are themselves symptoms of something else: the lack of knowledge and information about the disease.
TB advocates appear consumed with treatment of and funding for the disease and whether TB receives equal attention as Ebola, AIDS, or malaria. While legitimate, such concerns should not overshadow the most important, basic step in fighting the disease: education on the conditions that breed TB contagion and how to prevent it.
TB education is important precisely because it is both a treatment and prevention tool. People will not seek treatment for a disease whose symptoms they do not recognize. Moreover, as a disease of poverty, people most at risk of contracting TB are less likely to have access to basic information about the disease. I have seen this first hand.
In rural Uganda where I grew up, people often talked about the “Ekikokolo,” a Luganda word for TB, which literally means a “big cough.” But in conditions where ‘big coughs’ aren’t all that uncommon due to poor living conditions and lack of healthcare, it is hard for anyone to tell the difference between a regular cough and a cough that is caused by TB.
People living in extreme poverty will delay a visit to the clinic for a diagnosis to avoid spending scarce resources on something that seems routine. They usually wait until the symptoms are so severe — like a bloody cough — to seek medical attention. By then, not only has the disease progressed but many more people may have been exposed or infected.
This happened to my primary school teacher, Mr. Musisi, back in 1996. He had a big cough for a long time, but no one suspected TB until he started coughing blood. Even then, people speculated that his excessive smoking caused the persistent cough. Others claimed he had AIDS, a typical rumor when one loses a lot of weight. Still others blamed witchcraft.
Although Mr. Musisi worked as a teacher, he could not afford a TB test. In Uganda, as in many poor countries, teachers — especially those in rural areas — were paid very poorly and often went for months without any pay at all. The problem was worsened by the absence of a clinic or hospital nearby with the capability to diagnose TB.
After months of rumors and suspicion, my teacher’s parents sold their cow — the only asset they had — to get treatment for their son. As it turned out, he had TB.
Mr. Musisi was put on treatment for six months, during which he lived in complete isolation. He was not allowed to mingle with anyone, not even his family. He stayed in his small hut alone and ate alone. People feared that they would catch the disease by sharing space or utensils with him. Mr. Musisi recovered from TB, but his story offers a crucial lesson on the value of TB education.
The adage, “prevention is better than cure,” holds true for every disease, including TB, and it begins with education and information. There is no substitute for TB education, and there can never be too much of it for a disease that kills 1.8 million people each year. It is time TB advocates make education a priority.
A message from the ACTION secretariat:
Today, on World Tuberculosis Day, take a moment and tweet about tuberculosis. It's time to end TB. DR-TB is a serious threat to global public health, and immediate action is required to stop its spread. The G20, which will be meeting in July in Germany, needs to be the "bullseye" for the effort to end TB and AMR. Visit our World TB Day page to take action.