Leprosy Awareness – Subhojit Goswami – The Leprosy Mission Trust India

Let’s meet Subhojit Goswami, who shares his insights into leprosy in this film. Subhojit walks us through leprosy’s impact, misconceptions surrounding it and the ongoing fight against this disease in India

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Leprosy is nothing but a simple bacterial infection that happens due to mycobacterium leprae.

So this bacteria gets into your body through your nose and oral sources and then they damage your motor and sensory nerves.

So, the more you delay on that front, you start developing deformity.

You can suspect that you have leprosy if you see any discolored patches in entire body and if that area, you have lost sensation.

So that’s the cardinal sign of leprosy and without any delay you should immediately get yourself checked and start the treatment.

And it’s a simple bacterial infection which requires you to have antibiotics for six months to one year depending on the severity of the disease.

And you’ll be completely cured after that.

On the one hand we see that the deformity rates have come down for leprosy which is a very good thing.

There was a time 20-30 years back when leprosy used to draw very exaggerated fear among community.

People used to almost ostracize, excommunicate people because they would look ugly, deformed hands, deformed faces, but that has ended or reduced drastically for good.

Now see there is this conception that leprosy is a disease, is a skin disease and you have to look at the dermatologist, you have to look for dermatologist to get it cured, but the fact is, if you get yourself diagnosed early, it’s going to stay limited to your skin, right?

But if you’re waiting for that and if you let that disease grow on you then it is going to affect your motor nerves, your movement of fingers, movement of legs, your sensory nerves, you will lose sensation, your limbs become anesthetic and it also affects your autonomic nerves which is, like, you don’t sweat.

It affects your sweat glands which means your foot are more prone to get cracks and because you have lost sensation you won’t know if, if your feet get wounded and you get ulcers which is also a reason why people have to undergo amputation when that ulcer grows on to you.

So it’s not just the ulcers, what we see in our hospitals and across the country is people at the age of 8-9 coming with deformities, with serious deformities, uh clawed fingers.

We try to help them with physiotherapy but when we, things don’t work out with physiotherapy, we have to, they have to go under the knife and we have to conduct reconstructive surgeries.

Much of it is avoidable because today we have the medicines, we have the MDT which is, if had early if somebody has that MDT at the early stage the person will not develop any deformity, the person will not develop the anesthetic limbs which will again lead to complications.

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What are some widespread misconceptions about leprosy?

There are certain myths about leprosy, let’s debunk them.

1: Leprosy is because of your past sins and your karma.

No, it’s a simple bacterial infection.

Myth number 2: Leprosy spreads through touch or sitting next to somebody who has leprosy.

No, you can only contract leprosy because of prolonged and close contact with somebody who has been undiagnosed for leprosy and you have to have very very weak immunity to get it.

3: Leprosy is hereditary.

No, there is no such scientific evidence that shows that leprosy is genetically carried.

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What is the prevalence of leprosy in India?

So if you generally talk to people in the metro cities like Delhi, Mumbai, Bangalore and you ask them if you have encountered persons affected by leprosy, the chances are that they would say no, but just because you haven’t seen somebody affected by leprosy doesn’t mean that the disease does not exist anymore.

In fact, the reality is really really stark if you look at the figures, the annual figures of leprosy.

For the last 10 years the numbers have remained stagnated at more than 100,000 or 120,000 cases across the country which is in fact the 60% of the global disease burden of leprosy and India contributes 60% to that.

Now, you may ask me that leprosy, 1 lakh cases in a 1.4 billion population doesn’t cut the ice, it doesn’t look too scary but, but if you look at, go granular and look at state specific data, you will see that yes there is still genuine concern about the number of cases that we see.

For example, seven states in India contribute around 75% of the total cases that the country reports every year.

Seven states contributing 75% and if you look at the states they are largely, have very very poor socio-economic indicators.

I can talk about Bihar, I can talk about Orissa, I can talk about Chhattisgarh and several other states.

Now the question is, why is it that we are seeing these cases upsurge in only these seven states?

We recently did a study to understand what are the stressors and why is it that the cases are concentrated largely in these parts of the country and why not down south in Tamil Nadu or Karnataka?

So we realize that there are two different stressors that are acting and making it difficult for people to get out of that leprosy cycle.

One is the multidimensional poverty that we see in these states.

So there are 30 districts in India which are having multidimensional poverty at the same time they have vulnerability in terms of climate extremes.

So we, you talk about Bastar in Chhattisgarh, we talk about Kalahandi in Orissa, you talk about Bahraich and Shravasti in Uttar Pradesh, talk about Sitamarhi in Bihar.

What we see is a, a pattern, that high prevalence rate of the disease, high multidimensional poverty.

When I say multidimensional poverty, poor nutrition, poor sanitation, poor access to housing and their houses are built in a very temporary makeshift materials.

So large swaths of population in this districts are not able to bring food to their table and we know for any, because leprosy is a bacterial infection and just like any bacterial infection you need to have a very very weak immunity in order to contract that disease and if we take a step back what leads to good immunity?

It’s nutrition.

So if there is multidimensional poverty, if people are not able to eat properly, have nutritious diet, they are hundred percent more probable or more at risk of getting this disease, contracting this disease.

Now if you look at the data, at least 5% of the total cases are pediatric cases, children under 15, which comes to, close to around 5,000 cases.

Now this is a clear indicator that the disease is actually transmitting within the community.

If people at the age of 6 and kids at the age of 6 and 7 are having it, it’s a clear indicator, yes, the community transmission is happening and another important indicator to look at is, out of the hundred thousand cases that India reports, 60% of that is the multibacillary leprosy.

I’ll break it down for you.

Multibacillary leprosy is the more contagious version of leprosy wherein a person has a higher bacterial load in the body which in turn means that the person is more prone to transmit the disease within the community as opposed to those who have lower bacterial load.

Now why is this bacterial load increasing?

Why are we getting cases of more multibacillary cases as opposed to less bacterial, less bacterial overload?

The reason is we are allowing people to sit on the disease and not act.

We are letting that bacteria to multiply and grow and create a situation where you, your nerves start getting affected.

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What are effective ways to promote awareness about leprosy?

If you, if you look at the way the communication campaigns happen, the awareness campaigns happen, it happens twice a year.

31st January which is the death anniversary of Mahatma Gandhi ji and on the 2nd of October which is the birth anniversary of Mahatma Gandhi ji.

Now, we understand that his contribution to leprosy is very, was very important and that’s why we pay tribute to him on those two days.

But if you look at the depth and the scale of the problem, we really need a communication awareness campaign that is sustainable, that is persistent and that hits at the nail.

And also we need an enabling ecosystem.

We see how people affected by leprosy are getting portrayed in the media and what are the kind of languages and phrases that are being used.

Not just media, we have policymakers going out in the public and considering leprosy as a social disgrace.

So as Leprosy Mission, as any organization working in the disability sector, they have to stand up and they have to say if you are holding a responsible position, you should be mindful of the languages and expressions that you use to describe a certain disability.

It could be leprosy, it could be any other disabilities.

And we have been doing that, we have been advocating for that through our campaigns and through writing to the media.

If you really encounter kids with deformities who need surgeries and reconstructive surgeries, you tend to wonder what is going wrong, where are we going wrong as institutions, as policymakers and as disability rights organizations.

Then you realize that the kind of awareness, the kind of awareness about the treatment modalities, about the risk factors of the disease, about the causes, about the transmissibility, about the contagiousness of leprosy, are we able to communicate this well and persistently with the communities who are most at risk and who need those awareness that most?

Now, now the question comes about the frequency and the content of our communication.

Are we telling them that you should be complying with the treatment protocol, you should not drop out of treatment?

Are we telling them that what are the disadvantages of not following that treatment regimen?

Are we telling them that this disease, the disability can be prevented if diagnosed and treated on time, if you have the medicines on time, if you get yourselves diagnosed.

There are cases where we see that people, when get to see the early signs and symptoms, they confuse it with any other skin disease and the problem that lies, especially in the rural areas, is that because the initial signs and symptoms are painless, people tend to ignore those signs and tend to approach the local faith healers and the local, they call it ‘Jhola Chhap’ doctors, who are not medical practitioners but they are always around and they try to reach out to them and get a quick fix for the initial symptoms.

But what they don’t understand is, because they are not going to a proper health facility and going to an expert of leprosy, the kind of treatment they are getting is not helping them, rather it’s worsening their condition.

They are coming with more bacterial load and they start developing the deformities.

This is what we want to avoid.

This is what we want to target.

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What progress has been made in the fight against leprosy?

What is good to see is that today’s face of leprosy is different.

We see happy faces, we see vibrant energetic people completely assimilated into the mainstream with no discrimination or fear against them and they are leading business verticals.

In fact in Leprosy Mission we have people who have cured of leprosy with no visible deformities.

They are married, they are happy with kids, have families running different verticals in our hospitals and they are good self-advocates for themselves and representing the community, representing the challenges in global platforms.

So, so on the one hand you might see that the, yes the disease still exists but on the other side, you see people who have overcome those challenges without any residual tendencies or residual complications and they are living a completely normal life in a, in a happy and jovial and conducive environment.