By Maya Palit
India has been grappling with the high rates of tuberculosis incidence for a while now, and according to the World Health Organization, approximately 2.8 million cases of TB are discovered annually, and about 40 percent of the country’s population suffers from latent tuberculosis. Women patients often get the rawest deal, because of limited access to nutrition, delays in diagnosis and treatment, social stigma, abandonment by family members, or the lack of material and emotional support.
A book released last month records the testimonies of women tuberculosis survivors across India. Nine Lives: Women and Tuberculosis in India by public health consultant Chapal Mehra and the health activist and writer Zarah Udwadia, chronicles the experiences of women through their illness. It is part of a larger campaign put together by Survivors against TB (SATB) In the book, they talk about facing discrimation (one patient from Gujarat says “If I reached a public space people would just leave, or they would loudly say ‘she has TB, stay away, leave”), the need for gender-sensitive measures to assist patients with TB, and emphasise the importance of family support.
One of the patients, Manasi, was diagnosed with Extensively Drug-resistant TB at the age of 19, and talks about how she didn’t let it turn her life upside down, and went trekking three months after her surgery for TB. Others reflect on how they were fortunate enough to have access to excellent health care services, but shudder at the alarmingly high incidence of the disease in the rest of the country.
Perhaps the most pertinent questions are posed by a 32-year-old former TB patients, who asks why a curable disease has become so powerful, and why there are such frequent cases of misdiagnosis, incorrect treatment, or a lack of knowledge about the number of multi-drug resistant TB patients. While it’s important to acknowledge the progress, however minute, being made to give child patients easier access to TB medication, these questions shouldn’t be forgotten in the process.