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In India, tuberculosis (TB) is both a severe health and economic crisis, costing India close to $24 billion in losses each year. It kills one Indian every minute and global evidence has shown that poverty and TB are deeply connected.
People who are poor and suffering from undernutrition often contract TB. They frequently experience severe economic barriers to health care, including high expenses as well as loss of income. Thus, TB is caused by both poverty and undernutrition.
Recently, a group of TB survivors wrote to JP Nadda, Minister of Health, inquiring about the direct economic benefit transfer scheme as envisioned under the National Strategic Plan (2017-2022). The idea behind this landmark scheme is to provide TB patients on treatment cash benefits to offset the economic costs of TB.
The scheme, though yet to be implemented, was applauded universally. More recently however, there have been reports of resistance to this scheme from within the government.
While India has declared its intention of eliminating TB by 2030, it is unlikely to do so unless it addresses TB induced poverty. This photo essay is a compilation of survivors and their perspectives on how TB has affected them economically.
Each image is a telling story depicting how those affected by TB survive it without economic support. In essence, we want the government to implement this scheme at the earliest making it as patient friendly as possible.
“No one asks us what we will eat. But they all tell us to eat the medicine on time. Although medicine was free, I needed money for travel to the DOTS centre and food. Throughout my treatment my two elder sisters supported me financially and do so even today.” Zakir, Multi-Drug-Resistant (MDR) TB Survivor. Photo Credit: Rohit Saha.
“When I was diagnosed with XDR TB, the biggest challenge of the treatment was a financial one. Due to the cost of the treatment, our savings depleted. My family had to sell one of the rooms in our house to fund my surgery.” Manasi, XDR TB Survivor. Photo Credit: Shampa Kabi.
“At one point I became so unwell that my husband had to stop work for six months and take care of me. As a result our income dwindled considerably. During this period, the NGO that was treating me stepped in to provide nutritional support for six months. With three children, I don’t know how else we would have survived without it.” Durgawati, MDR TB Survivor. Photo Credits: Rohit Saha.
“Money was limited and fighting TB required nutritious food, which is expensive. As a result, my husband, who is a tailor, moved to Bangalore to make more money. We couldn’t afford my food and her (daughter’s) education with the work available here. He comes back every few months, while I live with his family.” Nurjahan, MDR TB Survivor. Photo Credits: Rohit Saha.
“My doctor failed to properly inform us about that one side-effect; brushing it off as something that can be reversed later – a rather facile way of referring to a surgery that cost 25 lakh rupees. Paying for the cochlear implant that would correct my hearing loss put a huge strain on my family. My parents have had to give up their whole life savings for just my hearing.” Debashree, XXDR TB Survivor. Photo Credits: Rohit Saha.
“The treatment for my MDR TB turned out to be extremely expensive. As my father works in the government sector, some costs were taken care of. Yet the out-of-pocket expenditures were tremendous, from tests to medicines. Eventually so much so that my parents had to take a personal loan.” Deepti Chavan, MDR TB Survivor. Photo Credits: Rohit Saha.
