Leprosy, integration and specialisation – the India story

Vijay
Leprosy is believed to be the oldest among
communicable diseases. Like in tuberculosis, leprosy
bacteria enter the host body through nose and mouth.
But the initial doses of MDT (Multi Drug Therapy)
make the patient non-infective. Popular fear about
leprosy stems mainly from the disfigurement and
ulcers it causes, as the bacteria affect the nervous
system. It is not very easy and common that people
work in leprosy or for people affected by leprosy. But
for those who chose to do so it was not just another
public health issue. They know that there are a lot of
people needing assistance but are neglected. The
number compared against the total population of the
country is not as important for them as it is to the
Public Health Specialist. The history of leprosy-work
in India in the recent past witnessed this conflict and
its management. This innocent face of lovely Ajay 
stands out as a living example of 
Emotional premises leprosy stigma. He calls for our 
While invention of dapsone brought in tremendous attention. Leprosy is not an old 
interest in leprosy work, the MDT heightened the story.  It is the oldest living story 
and needs urgent action. 
morale of leprosy workers like never before. Jobs in
government or NGOs apart, they believed it different Very recently Master Ajay was 
from working in other departments, with health issues abandoned by his parents at a 
or for disease control programmes. Human kind railway station in Orissa. He was 
always respected selfless service and remembered Fr taken to an orphanage run by 
Damien as an exemplar in the field of leprosy. Fr Missionaries. He was re‐directed to 
Damien chose to serve the excluded and rejected a leprosy home in another state. 
people in the island of “lepers”. Modern history Now he struggles to learn the new 
local language. But he is happy to 
provides information and scientific knowledge about
find some loving inmates there. He 
leprosy that it is not a curse but is caused by infection
is happy to start at his informal 
of bacteria. Branding individuals and personalities school where he has some good 
gave way to knowing them as persons affected by friends.  
leprosy. But the challenge of leprosy workers was very
tough to break the centuries old social stigma which no
other disease shared in such a magnitude. There was
always an element of passion and energy in leprosy work which only got strengthened with
results of more scientific studies coming out. WHO endorsed MDT in the beginning of
1980s. By the 90s in India it got popularised and went into the remote villages and
settlements in forest hills in a mission mode. By this time it was not only MDT and secondary
prevention of the disease, but also prevention of disabilities, IEC, behaviour change
communication, social re-integration and rehabilitation. All these were possible with good
amount of funding coming from the NGO- charity sector and allocation of funds to upkeep
the vertical structure devoted to leprosy by the government.

Eliminating a disease from the list of public health issues is an interesting phenomenon which
the leprosy workers in India understand better than anybody else. When the rate of cases on
record (prevalence) slips below 1 per 10,000 people, leprosy ceases to be a public health
issue. The public health professionals took pain to convince leprosy workers on public health
and science behind elimination. However public health is not just people and health – it is
more economics.

Public Health Issue

Globally India contributed to the largest number of leprosy cases. Around 70% of all cases
are in India. Leprosy was counted as a public health issue globally and in India till recently.
The National Leprosy Control Programme was launched in 1955. With the introduction of
MDT, National Leprosy Eradication Programme (NLEP) was launched in 1983. WHO took
stock of the situation and declared global elimination of leprosy by year 2000, in 1991.
Shortly with the help of a loan of Rs 292 crores from World Bank the National Leprosy
Elimination Project (NLEP) Phase I was launched in 1993 at a total cost of Rs 550 crores. It
covered the whole country with more focus on high endemic districts with a national target of
detecting 20 lakh (2 million) new cases. Thirty eight lakh new cases were detected and 44
lakh (4.4 million) cases were cured with MDT by the end of the project.

Trend of PR & ANCDR

30
25.9
PR
Prevalence & ANCDR

25

20.0 ANCDR
20

15
13.7
10.9
8.9
10 8.4 7.0
5.9 5.8 5.5 5.5 5.9
4.4
5 3.3
6.4 5.1 5.6 2.3 1.4
5.9 6.2 5.7 4.9 4.6 5.3 5.3 1.2 1.2
3.7 4.2 3.2 2.4 1.3
0
0.84 0.72 0.74
91

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01

02

03

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05

06

07

08
19

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20

Year (March End)

MLEC I (97-98) II (‘99-2000) III (’01-02) IV (02-03) V (2004)

New cases 4.5 lakhs 2.14 lakhs 1.65 lakhs 1 lakh 0.6 lakh
detected
Coverage All states and Active search All the states All states, 8 states
UTs in 5 states. and UTs in 4 Passive,
VRCs in 7 different Reduced
states methods duration

NLEP Phase II which started from 2001 aimed at decentralisation, integration and
elimination at national level by the end of 2004, with a World Bank loan of Rs 1,663.5
millions. Starting from 1997, five Modified Leprosy Elimination Campaigns (MLEC) were
taken up till 2004. The Annual New Case Detection Rate (ANCDR) touched its peak (8.9 per
10,000 people) in 1999. Then onwards it reduced significantly and halved within 4 years.
The fluctuations and quantum downward jumps were mostly due to operational factors,
changes in definitions and policies rather than actual fluctuation in the infection rate.
The actual rate of reduction of infection could have been slower than the figures illustrate.

With resounding successes of the NLEP phases and campaigns the larger picture gives a
pleasant look. The objectives of the NLEP were achieved. The road ahead for leprosy was
nothing but integration.

Integration
Leprosy is different from other communicable diseases in many ways. Its epidemiology
cannot lead to a crisis in health or political scenario. Most people are immune to leprosy
bacteria. Its incubation is as long as 2 to 5 years. Leprosy does not influence mortality rate.
These features were favourable in arriving at mechanical decisions on leprosy programme.
Though the NLEP phases set a stage for integration by providing opportunities for the
General Health System and its staff (GHS) to involve, participate and get trained, they never
owned the programme. The different tiers of GHS and the erstwhile NLEP vertical staff did
not have a common understanding on how to take the leprosy programme forward.
Integration never had a uniform status among various states in the country. Even within states
it could not establish systems in place uniformly. In Andhra Pradesh the vertical staff were
made part of the GHS through an order dated 20th January 2004. But this could happen only
in 2005 in 19 districts and in other four districts after a lot of resistance from the vertical staff
in 2007. From people’s point of view this created a lot of inconvenience as nobody including
the vertical staff under litigation or otherwise was available to offer services. As a result,
diagnosis of new cases were delayed, reaction cases did not get proper attention and disability
prevention activities got ignored.

By integrating leprosy services into GHS, it was expected to get wider coverage. The huge
expenditure incurred on maintaining the vertical structure could be merged with the GHS. It
was not meant to dilute leprosy services, but to utilise the wider web of GHS for the sparsely
populated leprosy cases. In line with this development, WHO brought out a guideline on the
new strategy of integrated work in leprosy where it advised the GHS to refer all
complications and cases needing expertise to referral centre, which was supposed to be
present in every district.

Specialisation
In a scenario where specialised care with the GHS is available only theoretically, the loss
meted out to the people affected by leprosy is tremendous. Integration never asked for loss of
expertise and specialists in leprosy. It never meant to discourage NGOs supporting people
affected by leprosy. It was also not intended at reducing availability of charity funding and
donations in leprosy work. But how it resulted in all these and discounted the millions of
people affected by leprosy need to be understood at the interest of human rights and equal
treatment.

India had a huge wealth of specialist knowledge through the leprosy workers and medical
specialists in government, NGOs and other international bodies. Different types of
presentations of symptoms, infections, reactions and complications were brought to light and
discussed at various forums. The aspects of medical and social rehabilitation of people
affected, psychological and social deprivations they are subjected to and human rights issues
were being discussed and understood. Probably the much needed advocacy in favour of
integration of leprosy services used numbers and strategies little indifferently, which has
given out a feeling to the world that ‘leprosy is history’ and the NGOs who want to live on
leprosy try to paint a different story for their own survival. The International federation of
anti-leprosy Associations (ILEP) alongside WHO and government of India was fully
involved in the leprosy elimination project and strengthening integration by organising
training programmes for the GHS in the whole country. ILEP also tried to retain expertise in
leprosy by engaging specialists and supporting government to continue with the leprosy
programme in its integrated form.

Leprosy in reality is different from many other communicable diseases. More than hundred
thousand people are newly detected in the country with leprosy every year without active
search. Every single of those persons male, female, child or adult would live for their full life
many often with shame and distress in the absence of care and support. Many of them
develop disabilities even after cure as the bacteria damage their nervous system. We have
specialised knowledge, expertise and surgeries available in our country to prevent most of
them progressing to disabilities. Leprosy is prevented only by treating the newly infected
patients and not by vaccine. Delay in case detection leads to further infections and
progression to disabilities. Over emphasis on prevalence rates which compares the number of
new cases against the total population of the country, is an indifferent way of dealing with
leprosy-related issues. Millions of people in India are already victims of leprosy and efforts to
reduce stigma, provision of specialised care and secondary prevention of the disease need
more attention and funds even in an integrated set-up.