On the occasion of World TB Day 2020, Kate Hawkins and Vinod Rao reflect on ARISE work in India.
According to the World Health Organization:
“In 2020, 86% of new TB cases occurred in the 30 high TB burden countries. Eight countries accounted for two thirds of the new TB cases: India, China, Indonesia, the Philippines, Pakistan, Nigeria, Bangladesh and South Africa.”
People in informal urban settlements are particularly vulnerable to TB but often several social conditions conspire against their ability to protect themselves from TB, and seek assistance when sick with TB. The ARISE hub partner, Society for Promotion of Area Resource Centres (SPARC) works with two community-based social movements – National Slum Dwellers’ Federation (NSDF) and Mahila Milan (a network of women’s savings collectives) – to seek rightful access to shelter, and civic amenities for those living and working informally in Indian cities.
During the COVID lockdown of 2020, SPARC undertook a series of phone interviews with residents in living in slum relocation colonies and informal settlements across Mumbai and other cities where they work. The interviews aimed to understand the perception of residents about the COVID-19 health crisis, Government and local response to the crisis, and experiences of lockdown. This was followed up with a quick data collection among about 4000 families, to know of the number of people with comorbidities and chronic conditions among other access information, so that they could formulate an action on it. This collected data, pointed to the prevalence of co-morbidities among people living in these locations and, consequently, federations working with SPARC suggested and offered direct nutritional support to about 150 families with members who have serious health conditions, including tuberculosis (TB). These families had been severely affected by COVID-19 movement restrictions, which limited both livelihoods and access to clinical treatment. The goal was to insure they received at least, the bare minimum of nutrition that is essential for recovery and times when their financial situation made it difficult to access it.
Further when the city opened up in between many smaller lockdowns with subsequent waves, the Mahila Milan sought the opportunity to reach out to the district Tuberculosis officers who showed great interest in partnering with them to address their own challenges with TB ‘targets’. A District Officer visited Indian Oil Colony to share information about TB, including care, protection, and addressing stigma. Another District Officer requested that five women members of Mahila Milan conduct door-to-door TB symptom screening activities in Indian Oil Colony, an ARISE action site of slum resettlement colony in Mumbai. Since then the relationship between the Mahila Milan and the TB office has strengthened and the TB officials have requested the Mahila Milan to consider running a medicine distribution centre (called as DOTS).
But it was essential that Mahila Milan needed to understand the challenge at hand better. So far they have heard of people saying that those living in slums and slum relocation colonies are the TB hotspots in the city, but do not know of many people in their neighbourhood that have TB. While the TB reporting was low among the list of comorbidities, when they decided to give out grocery assistance, there were a flurry of applications, where people came to the office with their diagnosis documents as evidence of their infection and treatment.
A resident from Indian Oil Colony said:
“When we surveyed, very few people reported having TB, but as soon as we announced that we wish to assist with food during the lockdown to families having someone with severe disease, there was a flurry of requests. So, we have to change the way we involve people for their health problems.”
Clearly, the stigma meant people were not willing to share their condition during the survey, but the huge financial pressures during the lockdown meant, whatever assistance was available, they wanted to claim it. This was Mahila Milan and SPARC’s first hand experience with nutritional access and importance axis of TB. But they all needed to know the disease better. They found a new ally – Medicines Sans Frontiers who then gave training on the medical aspects of the disease by their experienced nurse.
While much of the activities by SPARC and Mahila Milan in the context of health had a ‘trial and error’ approach, the myriad actions is slowly helping and will help to frame the context of organised federations’ work with health and in particular to TB. While the uptake is slow as we write this blog, the Mahila Milan periodically meet the District TB officer in their area, seek understanding on how the trends are, and visit and speak to families about their battle with the disease and its treatment. The Mahila Milan meet 20 families and support them with groceries, and interact with them regularly to understand if the nutritional support is assisting them in better treatment outcomes, and understand other elements of support that they need as individuals and families. The Mahila Milan have worked with the DTO centre to revive inactive nutritional support entitlements that the national government pays to each person seeking treatment each month.
The principle goal of the TB work of SPARC – Mahila Milan is to understand the many socio-economic barriers to testing, treatment, and just simply living with the disease. While seeking effective action from the duty bearers is essential and is the ultimate goal, understanding and gaining knowledge on the issue at hand is a first and they consider the current action work as their treading the learning path. More generically beyond TB alone, they say,
“Mahila Milan used to work on health but just limited to mobilizing financial help for treatment, but we are now focusing on getting more knowledge on health challenges and addressing them systematically.”