Hamari Awaaz: Addressing stigma in people living with multidrug-resistant tuberculosis in India

Hamari Awaaz: Addressing stigma in people living with multidrug-resistant tuberculosis (TB) in India was created by nine women who participated in a photovoice study with Doctors Without Borders / Médecins sans frontières (MSF) India. Faculty Member Amrita Daftary and Postdoctoral Fellow Tahiya Mahbub participated in the study. The concept and contents of the book were created by the nine women. Mahbub facilitated the process, and Daftary wrote the forward.

The result is a book that reveals the intimate severity of drug-resistant TB stigma.

Daftary and Mahbub answer some questions about the book.

What does Hamari Awaaz mean, and why is this the title?

Hamari Awaaz is a Hindi phrase meaning “our voice.” It can also be interpreted as "uncharted voices,” which is why the women who created this book chose this title. The book represents voices that have previously remained unexplored, uncharted, unrecorded, unheard. That is, in this book, we find the voices of nine women representing themselves. It is an unchartered perspective on the stigma of living with drug-resistant TB.

What is the particular burden of drug resistant TB among young women in India?

India bears about a quarter of the world’s TB burden. Each year, an estimated 2.64 million people fall ill with TB (active disease). About three per cent of TB patients have multi drug resistant TB (MDRTB). That is 83,000 people who have one of the most severe forms of TB, and which is also resistant to the most effective first line TB treatment.

People with MDRTB face substantially higher morbidity and mortality. They also face diagnostic and treatment complexity, poor access to high quality tests and newer drugs, and immense social and economic hardships including stigma and discrimination. Overall, men have the highest burden of TB disease (59% of the total burden), but in the 15-24 age group, women and men encounter similar rates of case notification.

What comes next for this book?

A Hindi version is in production. We are reaching out to clinics, counsellors, and peer supporters, so that they have a resource to share with people who report feeling stigmatized, to build solidarity, and to build resilience.

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