ATLANTA – In 2013, approximately nine million people developed tuberculosis infections and 1.5 million people died from the disease. The large majority of infections and deaths were in the developing world. Even so widely prevalent, TB is still surrounded by myth and stigma, especially in the developing world.
According the WHO, “stigma may lead someone with TB to hide symptoms, avoid or delay seeking care, hide a diagnosis or default from treatment,” all of which can lead to a worsening of symptoms, drug resistance and new infections.
The most common cause of TB stigma is the fear of infection. Even with successful treatment, that stigma does not go away. Treatment for TB is a lengthy process called Directly Observed Treatment Short Course, or DOTS, that lasts six to nine months. The rise of multidrug-resistant tuberculosis (MDR TB) and extensively drug-resistant tuberculosis (XDR TB) has made treatment more expensive, lengthy and difficult to access.
Stigma is especially prevalent for women. Although they make up less than half of TB cases around the world, they face higher barriers to treatment, both actual and felt. Because it can be expensive and time-consuming, women may have a harder time receiving treatment. Additionally, abuse in the home may be a consequence of seeking diagnosis and treatment.
Some first-line drugs, like rifampin and isoniazid, can cause outward signs of medication that signal to patients’ families and communities that they are receiving treatment for TB. Stigma may increase the likelihood that patients will stop treatment early, especially if their condition becomes public. The risk of discontinuation of treatment is great and can lead to MDR and XDR TB.
MDR TB and XDR TB can lead to new or stronger stigma. Because first-line drugs do not work for MDR and XDR TB, initial treatment can seem ineffective. This not only increases the risk for close family to contract TB, but also augments the cycle of stigma and misinformation obstructing the pursuit and continuance of treatment.
In India, the country with one third of the world’s TB cases, stigma is especially deep. Because of low education about TB and the infectiousness of the disease, people in India diagnosed with TB often face social isolation, jeopardy of employment, discontinuation of treatment, abuse and abandonment. Many people do not understand how the disease is transmitted, thinking that a handshake or sharing food will lead to infection. These misconceptions often lead directly to patients either not pursuing treatment or discontinuing treatment.
Because tuberculosis disproportionately affects the poor, stigma can drive vulnerable populations into more impoverished situations. Studies have shown that public health efforts to educate populations about TB can help diminish the risks of stigma and myth deterring the pursuit and continuance of treatment.
– Caitlin Huber
Sources: WHO 1, WHO 2, NCBI, CDC, Oxford Journals, Action, TB Alert
Photo: New TB Drugs