India’s TB challenge: Unmasking the social stigma

Urvashi Prasad, CNS Correspondent, India
TB has surpassed HIV/AIDS worldwide as the greatest killer disease due to a single infectious agent. With an estimated 2 million new cases every year, India has the highest TB burden of any country in the world. It also claims an unacceptably high number of lives (around 300,000) in India every year, despite being a fully curable disease, if diagnosed early.

TB, is not a health issue alone but also a socio-economic one as it disproportionately affects those who are in their most productive years— between the ages of 15 and 54. Apart from health system related issues, an important reason for the high TB burden is social stigma. This stigma causes patients to deny their condition or not seek treatment because of an apprehension about losing social standing. Denial or a delay in seeking treatment, not only increases the chances of not getting cured but also increases the spread of the infection, passing it on to others, if the patient has TB of the lungs. It also makes it harder to treat the patient once he or she eventually becomes known to the health system at a more advanced stage.

Stigma manifests in several forms. It is estimated that 100,000 women in India are asked to leave their homes because they have TB. Patients also fear losing jobs if their employers find out about the condition. Nearly 300,000 children in India are forced to drop-out of school because they or a parent has TB. In some areas having TB is considered to be a bad omen and patients are completely isolated or even abandoned. At a recent webinar hosted by CNS, Dr. Jamhoih Tonsing, Director (South East Asia), International Union against Tuberculosis and Lung Diseases (The Union), in response to a question about social stigma highlighted that efforts are being made to address this challenge in the context of TB. She spoke about the engagement of the famous Indian cine-star Amitabh Bachchan, who has publicly acknowledged that he has been treated for TB, as a brand ambassador for TB treatment and cure.

She expressed the hope that the involvement of a celebrity with mass appeal, like Mr. Bachchan, could help to mainstream the dialogue around TB and break the stigma. However, she also emphasised that a lot more needs to be done. A study that analysed TB associated stigma in India, Colombia, Malawi and Bangladesh found that the overall stigma index was highest in India. A popular misconception is that stigma mostly affects the weaker socio-economic sections. The reality is that all segments of society are affected by it. In-depth research therefore needs to be conducted into the different ways in which stigma manifests in India. It will facilitate a better understanding of stigma as well as help to develop a range of interventions that can be deployed to tackle it. It is also important that all possible channels of communications are utilised for dispelling the myths associated with TB and empowering people by providing them with correct information about the disease, its transmission and treatment.

While mass media advertisements with celebrities can play a crucial role, other channels like community radios and street plays must also be utilised. The role of schools as a platform for disseminating accurate messages about TB should also be explored. Children are powerful change agents and can help to spread these messages to their families and communities. Ultimately, it is for all of us to ensure that no patient loses her/his life to a disease that can be cured completely. TB does not have to be a death sentence but persistent social stigma contributes to the loss of hundreds of thousands of lives due to it every year. In fact the stigma might be doing more damage to the patients than the condition itself, and we need to put an end to it by implementing a range of appropriate strategies at scale.

Urvashi Prasad, Citizen News Service - CNS
April 20, 2016