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Leprosy Situation in India
July
2003
The present report describes the current leprosy
situation in India,
as on July 2003. The sources of the data presented in this report are from
the Central Leprosy Division, Government of India. The figures are from the
end March 2003, end of the fiscal year.
 Introduction
In
2003, the South-East Asia Region is the only region where the leprosy
prevalence is above 1 per 10,000. Leprosy in the SEAR contributes to 72.5% of
the global prevalence and 83.5% of total new detected cases. In the region,
three countries are still having a prevalence rate (PR) above the elimination
goal of less than 1 per 10,000 (India PR: 3.2, Nepal PR: 3.1, Myanmar PR:
1.2). India
alone represents 64% of prevalence and 75% of new detected cases worldwide,
and 89% of prevalence and 90% of new detected cases in the SEA Region. It
clearly shows that India
is the key country for elimination of leprosy in the region.
Epidemiological
Situation in India
As on 1st
April 2003, eleven endemic states (Andhra Pradesh, Bihar,
Chhattisgarh, Jharkhand, Karnataka, Madhya Pradesh, Maharashtra, Orissa,
Tamil Nadu, Uttar Pradesh and West Bengal)
contributed for 93% of registered cases, during the year 2002-2003.
On 1st
April 2003, the number of leprosy registered was 346 000, down
from 439 782 the previous year, a decrease of 93 782 cases.
Out of 35 States/Union Territories, 15 had a PR
below 1/10,000. Out of 590 districts, 212 (35.9%) had achieved the
elimination level; 6 other states and 87 districts (14.8%) are near
elimination with a current PR well below 2/10,000. The 11 most endemic states
contributed for 94% of all new detected cases during the year 2002-2003.
A total of 476 000 cases were detected during the
year 2002-2003, a decrease from the 618 041 cases detected during the
previous year. On 1st April
2003, the Annual New Case Detection Rate was 4.5 per 10,000.
Among the new detected cases, the proportion of MB cases was 35.2% (167 750
cases), the proportion of children under 15 years old was 14.8% (70 686
cases), the proportion of female was 33.8% (160 998), and the proportion of
cases with visible deformity (grade-2) was 1.8% (8526 cases). The Schedule
Caste cases represented 14.6% and the Schedule Tribe cases 7.9% of the total
new detected cases.
The proportion of children cases is still high. This
is a result of either high transmission or intense elimination activities
targeted to this age group (school survey). Surprisingly, the highest child
proportions came from states with lower prevalence rates (e.g. Andhra Pradesh
24.5%, Karnataka 21.3%, Maharashtra 19.8%, Tamil Nadu 17.8%, as opposed
to Bihar 16.1% and Uttar Pradesh 8.3%). It
is probably due to intense school survey activities in those states.
Among the top endemic states, the proportion of
female varied from 44% in Maharashtra, to 26% in West
Bengal. It is not clear why such variations occurred. It might
be due to a lower awareness and/or access to health care within the female
community. It was noted that during the MLEC active search, the ratio of male
to female was close to one.
The proportion of new detected cases with visible
deformity continued to decrease steadily in the year 2002-2003, at 1.8%, from
2.1% during the previous year. It showed that early diagnosis is taken place
for most of the cases. This proportion has been decreasing steadily from 1998
when it was 3.7%.
Regarding detection, a major step taken in 2003 by
the Central Leprosy Division, GoI, was to discourage all active search
activities (e.g. school surveys, contact surveys, etc.), but to encourage
voluntary reporting through increased awareness.
Trends in
prevalence and detection
Prevalence has decreased steadily in India,
since the introduction of MDT in 1985. By March 2003, the prevalence was
reduced by 93%. From 1998 to 2001, the prevalence showed a declining trend
with a slight increase in 2002, due to a higher number of cases detected
during this year. In 2003, the trend continued to decrease to 3.2 from 4.2
per 10,000 in 2002.
Trends in detection increased in 1999, mostly due to
the first Modified Leprosy Elimination Campaign (MLEC), which was also
carried out in 2000. In 2001, there was no MLEC conducted in India.
The third campaign was carried out in 2001-2002, and MLEC-IV in 2002-2003. It
is planned that the fourth MLEC was the last one.
The significant decline in case detection in
2002-2003, despite the MLEC-IV, represented a decrease of 142 041 cases
detected, compared to the previous year. Despite this improvement, it is
believed that the still high detection rate is due to contradictory factors.
On one hand, the intensified detection activities such as MLEC and the
increase in geographical coverage of MDT services during the integration
phase contributed to the relatively stagnant detection rates. In the other
hand, operational factors, such as detection targets given by the Central
Leprosy Division, GoI, re-registration of old cases as new cases, and wrong
diagnosis also contributed to the detection rates.
Due to strong advocacy from WHO, the Central Leprosy
Division has decided from April 2003, to stop giving detection targets to the
States. In addition, a validation of leprosy diagnosis study has been planned
during July 2003, in order to quantify the level of wrong diagnosis and
re-registration of cases.
Modified
Leprosy Elimination Campaign - MLEC-IV
During
the MLEC-IV, 102 153 cases were detected, of which 76 138 (74%) through
active search and 26 015 (26%) by voluntary reporting. As expected, data
showed that the number of cases detected through consecutive MLECs had
decreased steadily from MLEC-I (463 594 cases), MLEC-II (213 732), MLEC-III
(164 993) to MLEC-IV (102 153 cases). This declining trend shows that the
campaigns have steadily cleared most of the backlog cases. On the other hand,
due to the nature of leprosy and its transmission pattern, it is surprising
that so many cases were still detected during the consecutive campaigns. It
could have be the results of multiple factors. Either the coverage was low
during the first campaigns with a high proportion of suspect cases that did
not show up for the confirmation, or the number of newly detected cases was
inflated by wrong diagnosis and re-registration of old cases.
In
any case, the proportion of cases detected through the routine detection
(mostly voluntary reporting) has significantly increased over the past 5
years, as described in the graph below. In 2002-2003, the number of cases
detected through MLEC-IV represented 21.5% of the total detection, compared
to 1999 when it was more than the half.
As
mentioned above, wrong diagnosis and re-registration of cases pose a problem
of accuracy of data. Several studies highlighted this issue. In 2000, an
independent evaluation of MLEC data, conducted in 5 endemic states, reported
that wrong diagnosis was between 6 to 13% and recycling of cases (cured,
defaulters or re-registration of old cases as new) varied from 36 to 82%. An
evaluation of MLEC-III by DFIT in Jharkhand found that wrong diagnosis was 8%
and recycling 9%.
Theoretically,
the verification of diagnosis of a sample of newly detected cases should be
carried out systematically by NLEP supervisors and District Technical Support
Teams (DTST) of ILEP agencies. Unfortunately, this activity is not done
regularly,
which hampers the quality of the case detection data.
Validation
of Leprosy Diagnosis
In order to quantify the issue described above,
under the leadership of WHO, a validation of leprosy diagnosis study will be
carried out during July 2003. Funded by WHO, and involving all partners (GoI,
NIH&FW, ILEP, WHO), this study will be carried out in one randomly
selected district of each of the 12 most endemic states, including Delhi. After a 2-day
standardisation workshop, the field work will be conducted from 14th to 31st
July, by 12 teams of 2 “validators’ each. All the new detected cases from 1st
to 30th June 2003
for PB cases and from 1st May to 30th June for MB cases will be re-examined
by the validators. It is expected that at least 100 cases per district will
be re-examined. Due to the lack of gold standard laboratory test, the
validation of diagnosis will be based on strict and standardised clinical
examination procedures. Both validators in each team will have to agree in
order to define if the cases included in the study are either true leprosy
cases (PB or MB), or re-registered cases, or not leprosy cases.
This is the first time in India that such a study, on a
large scale and with standardised procedures, will be conducted. Depending on
the results, it is hoped that it will help to sensitise all the health
workers involved in leprosy as well as the decision makers, on the importance
of the accuracy of leprosy diagnosis as well as the application of the standard
definition of a new case.
Results are expected to be available during August
2003 and will be incorporated into the LEM report.
Leprosy
Elimination Monitoring (LEM)
The second LEM was carried out in 13 endemic states
from 19th May to 13th June
2003. Funded by WHO, under the coordination of NIH&FW, it
involved WHO technical inputs and all ILEP partners. Based on the same
methodology as last year, it included some modifications: a) Delhi state was added
due to a high prevalence rate (4.3 per 10,000) and the suspicion of a high
re-registration rate, b) basic information on the implementation of the new
Simplified Information System were included, c) some indicators regarding
leprosy awareness of community members were also included.
At the time of writing this report, the data entry
and making preliminary tables of indicators are still under progress at
NIH&FW. The final reports (one global and one specific for each State)
are expected during September 2003.
Leprosy
activities in 2002-2003
Decentralization
In 2002-03, through the State Leprosy Societies, the
States are more actively involved in the National Leprosy Eradication
Programme (NLEP), with direct supervision of the districts. The States have
full responsibilities for proper utilisation and timely distribution of funds
to the districts as well as for implementation of leprosy activities as
defined in the Project Implementation Plan. State leprosy review meetings,
including the district chief medical officers and leprosy officers were
conducted in most of the states. These meetings enable the state to appraise
the situation and take corrective measures. The Central Leprosy Unit
continues to give directives for standardisation of activities through
national guidelines.
Integration
The integration of MDT services into the general
health care system is a key element for achieving elimination and also for
sustaining leprosy activities in the post-elimination phase. In 2002-2003,
progress towards integration was made in India, though unevenly among the
various priority states. In general, about 80% of MOs had been trained prior
to the repeated MLECs. However, some pockets of untrained MOs had been
identified. Plans for training had been set up at the state level.
In general, the level of integration is inversely
proportional to the number of vertical staff, specialised leprosy health
workers, in a specific state. One of the remaining challenges is that a
significant proportion of the vertical staff is reluctant to allow transfer
of programme tasks and the general health care staff is unwilling to accept
additional tasks without any benefit. By March 2003, the contract of one
third of the leprosy contractual staff has been discontinued, as planned in
the Programme Implementation Plan, under the second phase of the World Bank
project.
In most states, the majority of the vertical staff
has been re-assigned to general health care infrastructures. But in other
states, vertical leprosy structures as Leprosy Control Units (LCUs) still
exist. A larger proportion of Medical Officers (MOs) of the general health
care system is diagnosing leprosy cases and initiating the first dose of
treatment. Good progress has been made in subsequent doses distributed by
ANMs at the health sub-centre level, especially in the states where
integration is progressing well (Orissa, Tamil Nadu, Maharashtra, West
Bengal, Bihar, Jharkhand,). However, this
activity is hampered in Bihar, Jharkhand,
and Uttar Pradesh where there are a large proportion of vacant ANM posts.
In states where integration is progressing well,
most of the criteria for fulfilling integration are met. The tasks that are
the last to be integrated are the leprosy records and reporting system to be
maintained by the General Health Care staff.
In some states such as Andhra Pradesh, Karnataka,
and Chhattisgarh, the vertical leprosy staff is still directly in charge of
the leprosy programme. They provide MDT services to designated LCUs with
little involvement of general health staff.
MDT supply
During 2002-2003, MDT drugs were provided to India,
by WHO-HQ, from the drug donation of the Novartis Foundation. MDT drugs
are distributed to the States through the six General Medical Stores of the
country. New packaging of MDT in six monthly packs was received in India
during the current year. There were no specific problems in procurement and
supply of MDT, except some shortages of MB and PB child during a short
period. This has been fixed already.
At the health facility and district levels, the
management of MDT stocks is still not systematically undertaken. At these
levels, buffer stock of 3 months are rarely observed for all type of MDT,
with either smaller stocks or excess. Previously, the MDT stock management
was in the hand of the vertical staff. Currently, during the transition phase
of integration, the MDT stock management is not yet fully in the
responsibility of the pharmacist or the MO of the health facility. The main
difficulty is that, most of the time, indents are not made according to the
caseload; therefore MDT stocks are often inadequate to prevent either
shortage of excess of MDT drugs.
In order to streamline this crucial activity, a
guideline is under preparation by the Central Leprosy Division, with
technical inputs from WHO.
Simplified Information System
(SIS)
As
a follow up to the National Workshop held in New Delhi on May 2002, the implementation
of the new Simplified Information System started in November 2002. Government
order for printing and distributing new formats and guidelines was issued
from the Central Leprosy Division. However the implementation was delayed in
most of the states due to administrative and operational reasons. As on July
2003, the implementation status of the SIS is still very patchy. A few States
(Maharashtra, Uttar Pradesh) have completed
the full implementation, while others are still at various stages. Most of
the states have distributed to the districts the new Monthly Report form, but
SIS guidelines have not yet reached the health facility level in most of the
states. Other new forms (patient’ card, leprosy and drug registers) are still
under process of printing and distributing. The main weakness of the
implementation phase was the lack of sensitisation workshop at district and
block level, resulting in the use of both old and new formats together in
quite a number of states. Another weakness is the absence of analysing data
and essential indicators at district and block levels.
Cleaning of leprosy registers
From
field observations, WHO suggested that the Government carry out a “cleaning
of registers” exercise in order to get more realistic prevalence figures. In
May 2002, GoI issued a guideline on cleaning the leprosy registers. The
objective was to update the data with more accurate figures by deleting
patients that were still counted but were no longer prevalent cases, due to
several potential factors: patient that had completed the fixed duration
therapy, defaulter, referred to another district/state, etc. This activity
was completed in most of the states, during the July-September period. A
total of about 515 000 patients’ records were examined and 65 883 cases
deleted (13%).
It
was also stressed that updating leprosy registers should be a routine monthly
activity, and completed when monthly reports are made; not an exercise to be
conducted each year, on a campaign mode.
NLEP management training of
District Chief Medical & Health Officers
WHO
and GoI identified the National Institute of Health & Family Welfare to
conduct a 3-day NLEP management training targeted at 360 district Chief
Medical Officers (CMOs) of the priority states. The objective of this
training was to enhance the CMOs capacity for analysing the leprosy situation
and trends of their district. The CMOs should be able to describe, discuss,
interpret and use the essential indicators for monitoring, supervision and
taking corrective measures. After this training, it is expected that the
CMOs, as part of the General Health Care system, will be more involved in the
implementation of the leprosy programme. The training was scheduled from
December 2002 to May 2003, with 18 batches of 20 participants.
As
on July 2003, a total of 186 (50%) CMOs have been trained, with good impact,
according to field observations. In agreement with GoI and WHO, NIH&FW
has planned to conduct six additional sessions during the September-November
2003 period.
IEC and advocacy
Nationwide
IEC through the mass media started in 2002 through the LINTAS (SOMAC) agency
with a budget of Rs. 11.32 crores, and continued through 2003. It includes TV
and radio spots in various languages covering the country through public and
private channels.
At
field level, most of the IEC activities were conducted during the MLEC
period, with little action during the rest of the year. The IEC component of
the programme appears to have limited effect. For example, leprosy is still
stigmatised and has a strong negative image. An impact assessment on ongoing
activities is needed. Some information on the current community awareness
will be available with the LEM 2003 results. Identifying the best tools to
promote community participation and defining which IEC activities should be
conducted to various target groups is another priority. The involvement of
the general care system in leprosy is also a key element to raise the
community awareness.
In
October 2003, a pilot activity, Communication for Behaviour Impact (COMBI)
was tested in 3 districts of Bihar. Results
showed conflicting outcome from on district to another, making the impact
assessment difficult. One of the limitation of the pilot project was its cost
(about 50,000 US
$), making the extension of the project to others districts/states little
cost effective.
Another
initiative from Uttar Pradesh, involving also school children to raise
awareness among their family members, but without the other costly components
of the COMBI, was more successful and could be extended in the future.
Urban areas
Leprosy in urban areas poses specific problems. In
most states, the health infrastructure and organisation of leprosy services
are not adequate, especially in large metropolitan areas. For the moment,
integration in urban settings has made little progress. Attempts by the
Municipal Corporations to provide more adequate leprosy services are
underway. As a coordinated effort, NGOs could play a vital role in working in
urban settings. Early 2003, the Central Leprosy Division had planned a
National workshop of Urban strategies, but this activity was postponed sine
die. It is hoped that it can be conducted during September-October 2003, in
order to provide clear guidelines on how to manage the leprosy programme in
various urban settings.
NLEP/WHO
State and Zonal Co-ordinators
At present, 18 WHO/NLEP coordinators are working in
9 priority states. The coordinators provide a very useful support to the
public health approach of the programme. They are directly involved in
planning, monitoring and evaluation of the programme in collaboration with
the State and District Leprosy Officers. Their field observations provide
critical information on the existing activities and the evolution of the
programme. During field visits, they provide on-the-job training to the
health workers and advocate to the local authorities for ensuring that
leprosy remains high on the agenda. They send monthly reports to the Central
Leprosy Unit and WHO.
SEARO is providing regular feedback to the
coordinators by e-mail, as well as technical support for preparation of
presentations or reports.
In the WHO “Special Package”, there is a plan to hire seven
IAS functionaries as Project Directors for the 7 most priority states. The
objective is to assist the state and districts authorities in identifying the
weak links in programme implementation and strengthen them by providing
administrative and managerial assistance. Because of their IAS affiliation,
it is expected that they could provide a critical support at State and
District levels, and complement the technical component of the programme run
by the State Leprosy Officer. So far, only one was positioned in Uttar
Pradesh, with great performance. Unfortunately, this Project Director had to
quit in June 2003, due to one-year management training in the Philippines.
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