Is the climate crisis standing between us and a world without leprosy?
An interview with Subhojit Goswami from TLM Trust India
If we look at the map of India, we will see there are seven states (out of a total of 36) which contribute around 70 per cent of the nation’s leprosy cases. These are states which, historically, have the lowest socio-economic indicators. They are also the states that are most vulnerable to several forms of extreme climate events.
Our team in India saw that ending leprosy transmission in certain endemic communities can be a challenge as they are affected by the climate crisis and multidimensional poverty.
We spoke to Subhojit Goswami from TLM Trust India’s Advocacy & Communications team to find out how their research can add a new dimension to the discussion on leprosy elimination in India.
Tim Burton from TLM International: What prompted you to take on climate-based research as a part of your leprosy work?
Subhojit Goswami: If you look at the global and national leprosy strategies, you’ll see that the focus is on ending community transmission, and justifiably so. To achieve this goal, we must understand why transmission happens and why people contract leprosy. A lot of it has to do with poor immunity, which is linked to nutrition insecurity and poor economic status.
It is not just a coincidence that in states with a high prevalence of leprosy, climate disasters rob people off their livelihoods and push them to poverty. Our study reinforces this fact.
TB: What research did you undertake to build your case?
SG: We started with a mapping exercise. We looked at three different thematic maps of India. The first covered socio-economic status, the second considered which states were most vulnerable to climate extremes, and the third looked at the leprosy burden in each state.
All of these maps had long been available, but no one had laid them on top of one another before. By doing this, we saw a stark correlation appear: high prevalence of leprosy in those states where poverty and climate crisis co-exist.
Once we had established this, we wanted to find out how certain districts were coping with extreme climate events and how these events were affecting their quality of life. We considered the social, health, and economic factors for people within the most affected communities.
We visited some of the most vulnerable communities and spoke to the people there to find out what their lived experience of the crisis was.
TB: What findings from your research stand out to you?
SG: If you look at an area like the Sundarbans in West Bengal, right on the border with Bangladesh, you will see an area that has suffered three cyclones within a span of just a few months.
We hear about these events in India, but the media reports are largely confined to the impact these events have on infrastructure or agriculture. However, when you dig deep, you see how many people, who are already living in chronic poverty, were literally (and metaphorically) in the eye of the storm. They were already the most at risk of developing leprosy or the people that had already begun to develop leprosy.
Their homes are not built with brick and mortar, they are mostly mud houses with semi-permanent structures and cyclones can flatten them. Perhaps this would not have been an insurmountable challenge in generations gone by, when super cyclones happened once every 10-12 years. Now these super cyclones happen every two years. Even less extreme cyclones are also likely to happen every few months.
If you live in such vulnerable houses, you are likely to become a refugee in your own land every four or five months.
So, if there is anything that stands out for me, it is the narrative of a person’s life in one of the states we studied. By that I mean, both the unmistakable sadness of the situations of people I met and the extent to which these circumstances may create a hotbed for leprosy transmission.
Take for example, a man I met who was in his twenties. He had been a hairdresser, earning a good living. He had to leave his job because leprosy caused his hands to claw and his fingers were no longer nimble enough to cut hair.
His wife got pregnant just before he was diagnosed with leprosy. Now they have a baby who is one year old, but they cannot afford even two meals a day. On most days, they manage with one meal a day.
This man’s uncle also had leprosy. Multi-generational leprosy burdens like this happen within families because poverty has dealt them bad immunity. So, that baby in his arms? How serious is the risk that he will develop leprosy?
How much more serious is that risk when you begin to realise that the climate crisis will trap him in a cycle of poverty? Where that family lives, floods make the area almost impossible to navigate. The waters bring rodents and serpents out and the saline water from the sea renders agricultural land incapable of producing anything. When the floods hit, this family has to go to their neighbour’s home if they want to use the bathroom.
The family is under a debt burden because of the lack of livelihood options in a climate-ravaged place like this. If they find work as informal workers for a few months, a new cyclone will arrive and take that opportunity away from them. They are marginal farmers, meaning there is a very small amount of land he can farm to feed his family, but because of leprosy, farming could damage his hands and feet.
They are desperate to find financial relief and bring food to their table.
This is a story of a family trying to survive the climate crisis within their own home. The situation does not improve much if you are moved into an emergency shelter.
These are temporary shelters, where 300 people can be crammed into a two-storey building for two or three months while the water subsides. These are places with inconsistent food aid and only two or three washrooms.
Whilst such shelters are a common response to the climate crisis in India, what are chances that we could realistically interrupt leprosy transmission in these communities? We are putting people with low immunity into close, prolonged contact with one another at the same time as making their nutrition and WASH facilities even more unstable.
I also want to note that it is not just cyclones that are causing this problem. In certain regions of Maharashtra, they have had three consecutive years of drought, and the media reports are rife with stories of farmers committing suicide. It is the new normal in that state, which contributes about 15-20 per cent of the nation’s leprosy cases.
TB: You have done an excellent job of outlining the problem, but what is the solution?
GS: We have always wanted this research to generate evidence on the need to consider how poverty and the sudden interruption of daily life because of extreme climate events can pose a challenge in preventing leprosy transmission. The findings of the report will inform and encourage leprosy and disaster management authorities at different levels of governance to collaborate to reduce the risk of leprosy transmission in climate-vulnerable states.
By collaborating, we can look at important questions. How can we consider how the vulnerabilities of the people we are working with will impact transmission and our efforts to detect cases?
There is a lot of momentum behind PEP because it is shown to make a dent in leprosy transmission, but we are making the case for thinking beyond PEP. There is undoubtedly a lot of value in PEP because it will protect people from leprosy for a few years, but we must find ways to reduce vulnerabilities in the long term.
The report does not contain any recommendations because we are conscious that we are not the experts in disaster risk reduction. The idea behind the report is to stimulate conversation amongst the key players. Hence, we are inviting district leprosy officers, disability commissioners, and those responsible for climate risk reduction to the launch of our report on the World Leprosy Day. We are also planning to invite people in India’s TB programmes and NTD programmes, as there is huge overlap between the problems faced in managing these diseases.
Our intention is that the solutions come from these people as they are the ones with grassroots experience. This research has been about starting a conversation amongst people with the power to affect change. Hopefully, change will come in India and hopefully what we do can be a model for leprosy programmes in other climate-vulnerable countries.
