Leprosy As A Health Issue

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  leprosy stigma. He calls for our  attention. Leprosy is not an old  story.  It is the oldest living story  and needs urgent action. 

Emotional premises While invention of dapsone brought in tremendous interest in leprosy work, the MDT heightened the 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  Missionaries. He was re‐directed to  Damien as an exemplar in the field of leprosy. Fr a leprosy home in another state.  Damien chose to serve the excluded and rejected Now he struggles to learn the new  people in the island of “lepers”. Modern history 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

PR ANCDR

20.0

20 15

13.7 10.9

10

8.9 8.4

5.9

7.0

5.8 5.5

5.9

5.5

4.4 3.3

5 5.9

6.2

6.4

5.7

5.1

4.6

4.9

5.6

5.3

5.3

2.3 4.2

3.7

1.4

1.2

1.2

3.2 2.4 1.3

0

07

06

05

04

08 20

20

20

20

03

02

20

00

99

98

97

96

95

94

93

92

01

20

20

20

19

19

19

19

19

19

19

19

19

91

0.84 0.72 0.74

20

Prevalence & ANCDR

25.9

25

Year (March End)

MLEC I (97-98) New cases 4.5 lakhs detected Coverage All states and UTs

II (‘99-2000) 2.14 lakhs

III (’01-02) 1.65 lakhs

IV (02-03) 1 lakh

V (2004) 0.6 lakh

Active search in 5 states. VRCs in 7 states

All the states and UTs in 4 different methods

All states, Passive, Reduced duration

8 states

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.