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Leprosy trends in Zambia 19912009

Nathan Kapata1,2,3,4, Pascalina Chanda-Kapata1, Martin Peter Grobusch4, Justin OGrady3,5, Matthew Bates3,5,

Peter Mwaba1,3 and Alimuddin Zumla3,5

1 Ministry of Health, Lusaka, Zambia2 National TB and Leprosy Control Programme, Ministry of Health, Lusaka, Zambia3 University of Zambia and University College London Medical School Research and Training Programme, University Teaching

Hospital, Lusaka, Zambia4 Center for Tropical Medicine and Travel Medicine, Academic Medical Center, University of Amsterdam, The Netherlands5 Department of Infection, Division of Infection and Immunity, University College London, London, UK

Abstract objective To document leprosy trends in Zambia over the past two decades to ascertain the

importance of leprosy as a health problem in Zambia.

methods Retrospective study covering the period 19912009 of routine national leprosy surveillance

data, published national programme review reports and desk reviews of in-country TB reports.

results Data reports were available for all the years under study apart from years 2001, 2002 and

2006. The Leprosy case notification rates (CNR) declined from 2.7310 000 population in 1991 to

0.4310 000 population in 2009. The general leprosy burden showed a downward trend for both adults

and children. Leprosy case burden dropped from approximately 18 000 cases in 1980 to only about

1000 cases in 1996, and by the year 2000, the prevalence rates had fallen to 0.67 10 000 population.

There were more multibacillary cases of leprosy than pauci-bacillary cases. Several major gaps in data

recording, entry and surveillance were identified. Data on disaggregation by gender, HIV status or

geographical origin were not available.

conclusion Whilst Zambia has achieved WHO targets for leprosy control, leprosy prevalence data

from Zambia may not reflect real situation because of poor data recording and surveillance. Greater

investment into infrastructure and training are required for more accurate surveillance of leprosy in

Zambia.

keywords leprosy, trends, pauci-bacillary, multibacillary, Zambia, epidemiology, surveillance

Introduction

Leprosy, like tuberculosis, is an ancient disease and was

prevalent in the ancient civilisations of China, Egypt and

India (Zumla et al. 2000; Lockwood 2002). The deformi-

ties of people with leprosy led to these individuals being

ostracised by their communities and families and con-

demned to leprosaria in some cases. The first breakthrough

for leprosy treatment occurred in the 1940s with the

development of the drug dapsone. The duration of the

treatment was many years, making it difficult for patientsto comply with the regime. In the 1960s, Mycobacterium

leprae, the causative organism of leprosy, developed

resistance to dapsone. The subsequent discovery of multi-

drug therapy (MDT) with rifampicin and clofazimine

added to dapsone led in 1981 to the World Health

Organization (WHO) Study Group recommending MDT.

In 1991, the World Health Assembly (WHA), the WHOs

governing body, passed a resolution to eliminate leprosy as

a public health problem by the year 2000 (WHO 2011).

The target was to bring down the prevalence rate of leprosy

to less than one case per 10 000 persons. Since 1995,

WHO provides free MDT for all patients in the world,

initially through the drug fund provided by the Nippon

Foundation and since 2000, through the MDT donation

provided by Novartis and the Novartis Foundation for

Sustainable Development.

Over the past decade, more than 14 million leprosy

patients have been cured, and a dramatic drop in the global

disease burden has been achieved: from 5.2 million in 1985to 805 000 in 1995 to 228 474 cases at the end of 2010

(WHO Report 2011). Efforts currently focus on eliminat-

ing leprosy at a national level in the remaining endemic

countries and at a subnational level in the others. Official

figures show that more than 213 000 people, mainly in

Asia and Africa, are affected. All leprosy endemic countries

are striving to fully integrate leprosy services into existing

general health services. This is especially important for

Tropical Medicine and International Health doi:10.1111/j.1365-3156.2012.03050.x

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those under-served and marginalised communities most at

risk from leprosy, often the poorest of the poor. Pockets of

high endemicity remain in some areas of Angola, Brazil,

Central African Republic, Democratic Republic of Congo,

India, Madagascar, Mozambique, Nepal and the UnitedRepublic of Tanzania (WHO 2011). New cases continue to

be reported, and some cases rates are now higher than the

elimination targets; therefore, it is important to sustain

and maintain the elimination levels globally.

As in the rest of Africa, leprosy remains a neglected

disease in Zambia. The Zambia leprosy control pro-

gramme suffered setbacks because of the advent of the

TB and HIVAIDS epidemics in the early 1990s and during

the health sector reforms in the late 1990s. This resulted in

loss of active case finding and surveillance, drug shortages

and inadequate health care. The TB and HIVAIDS

epidemics had a disastrous effect on the health of the

people of Zambia and led to inadequate resourceallocation for diseases other than TB and HIVAIDS,

resulting in neglect of the leprosy control programme. We

reviewed available data on leprosy trends in Zambia to

ascertain the problem leprosy poses to Zambia and the

challenges being faced to sustain the gains made towards

the WHO leprosy elimination target.

Methods

A retrospective review and analysis of routine national

leprosy surveillance data were performed using the avail-

able data from 1991 to 2010. Patients suspected of leprosy

are screened using symptoms, and there are three cardinalsigns that are looked for before a diagnosis is made and the

sings include: definite loss of sensation in a pale, hypo-

pigmented or reddish skin patch; a thickened or enlarged

peripheral nerve, with loss of sensation andor muscle

weakness of the muscles supplied by that nerve and the

presence of acid-fast bacilli in a slit skin smear on

microscopy. A diagnosis of leprosy is made when one or

more of these cardinal signs is present. For each patient, a

case record card (PRC) is opened, and information is

recorded in the facility register. The classification is based

on counting the number of skin lesions; paucibacillary (PB)

cases have up to five skin lesions and multibacillary (MB)

cases have six or more skin lesions. A positive skin smear isalso classified as MB if two or more nerves are affected,

whereas a negative skin lesion is PB if there is only one

neural leprosy. There was no change in case definitions,

diagnostic or treatment protocols during the whole period

under review. Surveillance data are compiled from cases

recorded at the health facilities and aggregated into a

district register, from which a report is compiled with other

district data into a provincial report and subsequently into

the national report. Most cases are diagnosed without slit

skin smears, and hence, the laboratory reports are not used

to compile patient reports. The case reports were from all

the 72 districts and nine provinces that were received

during this period. The quality of reported data, includinglaboratory data, is validated and verified quarterly by

programme staff at the higher levels to the lower levels.

Data available from published national programme review

files and reports from independent reviewers for the

programme and other assessment reports were also

reviewed for this period. Population data from the central

statistics office were based on estimate projections and two

census data points, 2000 and 2010.

Results

Data reports were available for all years under study apart

from years 1990, 2001, 2002 and 2006. The Leprosy casenotification rates (CNR) declined from 2.7310 000 pop-

ulation in 1991 to 0.4310 000 population in 2010

(Table 1). The general leprosy burden showed a downward

trend for both adults (Table 1 and Figure 1) and children

(Figure 2). The leprosy case burden dropped from

approximately 18 000 cases in 1980 to only about 1000

cases in 1996, and by the year 2000, the prevalence rates

had decreased to 0.6710 000 population. There were no

data for the period of 1990, 2001, 2002 and 2006. Data

gaps existed for years 1990, 2001, 2002, 2006 and

analyses of trends between years 2000 and 2008 where

Table 1 Leprosy Case Notification Rates (LCNR) per 10 000

population: 19912009

Year Estimated population LCNR

1991 7 950 000 2.73

1992 8 189 000 2.01

1993 8 457 000 2.74

1994 8 764 000 1.48

1995 9 121 000 0.99

1996 9 453 000 0.98

1997 9 680 000 0.82

1998 9 787 000 0.75

1999 9 800 000 0.75

2000 10 113 000 0.682001 10 547 000 NA

2002 10 800 000 NA

2003 10 958 000 1.37

2004 11 089 691 1.46

2005 11 441 461 0.48

2006 11 798 678 NA

2007 12 160 516 2.55

2008 12 525 791 0.63

2009 12 814 035 0.43

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N. Kapata et al. Leprosy in Zambia

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CNR increased to 1.37 for 2003, 1.46 for 2004 and 2.55

for 2008 could not be performed. There were more MB

cases of leprosy than pauci-bacillary cases (Figure 1). The

percentage of patients with disability grade II fluctuated

during the study period with the highest of 17% in 1998

and the lowest of 1% in 2009 (Table 2); data on disability

were missing for the years 2001 to 2008. Several majorgaps in data recording, entry and surveillance were

identified. Data on disaggregation by gender, HIV status or

geographical origin were not available.

DiscussionLeprosy remains an important public health problem in

adults and children in Zambia. The continued detection of

leprosy in children also reflects ongoing transmission from

active cases in the community. Whilst a downward trend

in the leprosy case notification rates (CNRs) is seen over a

decade, and WHO leprosy control targets were seemingly

achieved by 2000, our study reveals major deficiencies in

the existing leprosy control programme and of the database

and accurate data keeping for surveillance of prevalence

and incidence rates. Our study illustrates the following:

(i) Poor record keeping, (ii) inadequate data recording and

surveillance systems, and (iii) insufficient information on

disaggregation by gender or geographical origin. Further-more, we saw that there are no data on HIV coinfection in

leprosy patients. There were more MB cases than PB cases

reported, and this probably shows that patients are mainly

diagnosed late or that there may be a genetic predisposi-

tion. There was a surge in the number of LCNR in 2007,

and no data are available for the preceding year; the

increase could be attributed to the catch-up of activities

after more funding was sourced from donors to train staff

and care providers, after poor record keeping in 2006.

However, further studies are required to understand

clearly the reason for such a discrepancy. The detection of

leprosy in children still raises public health concern and

efforts should be put in place to ensure that cases aredetected early, especially for school children (Nsagha et al.

2009). The high percentage of patients with disability

grade II means prevention of disabilities and rehabilitation

services urgently need to be strengthened.

Leprosy has afflicted humankind since the dawn of

history, and like TB will be difficult to eradicate globally.

In 1991, there were estimated 5.5 million cases of leprosy

worldwide occurring mainly in Asia, Africa and South

America. WHO announced global elimination of leprosy in

2001 (WHO 2005), although there is uncertainty about

how true this statement could be (Lockwood 2002);

therefore, more programme assessments and reviews are

recommended to fully understand how the actual burdenis considering the many challenges that low resource

2500

2000

1500

1000

500

0

y1991

y1992

y1993

y1994

y1995

y1996

y1997

y1998

y1999

y2000

y2001

y2002

y2003

y2004

y2005

y2006

y2007

y2008

y2009

PB

MB

Figure 1 Pauci-bacillary and multibacillary leprosy cases.

0.25

0.20

0.15

CNR-Child

CNR-Child

0.10

0.05

-

y199

1

y199

3

y1995

y1997

y199

9

y200

1

y200

3

y2005

y2007

y200

9

Figure 2 Leprosy notification rates (Per 10 000 population) in

children under 15 years 19912009.

Table 2 Percentage disability grade II 19912009

Year 1991 1992 1993 1994 1995 1996 1997 1998 1999 2000 20012008 2009

Disability grade 2 (%) 3 3 14 10 9 14 17 17 4 8 NA 1




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countries are facing in reporting and recording. Many new

cases are still being recorded and the continued occurrence

of leprosy in children reflects ongoing transmission. Offi-

cial reports show that the global prevalence of leprosy

registered at the beginning of 2009 was approximately213 000 cases, whilst the number of new cases detected

during 2008 was about 249 000. Although the magnitude

of the problem is often expressed as the number of cases

registered by the control programmes, this does not reflect

all the cases that are prevalent in a given area (Noordeen

et al. 1992).

In Zambia, leprosy control originated from the works of

the missionary activities in the mid 1800s; leprosaria were

founded all over the country, and by 1968, a total of 31

leprosaria were established (Ministry of Health 2007). It

was a major public health problem previously with

approximately 16 000 cases in 1982; by 1989, cases had

dropped to about 3600 (Steenbergen 1991). In 1995, afterhealth reforms and integration of all health services and

abolishment of vertical programmes, leprosaria were

abolished and most of them became converted into general

hospitals (Bosman 2000; Mwaba et al. 2003; Ministry of

Health 2007; Kapata et al. 2011). Owing to the integration

of the Tuberculosis and Leprosy Control Programme

(NTLP) into the general health services, there was loss of

focus on TB and leprosy control activities to the extent that

surveillance data were lost and reports were not consistent,

there were drug stock outs and the programme almost

collapsed (Bosman 2000; Kapata et al. 2011). The NTLP

programme was re-organised in 2000 to correct the

situation (Ministry of Health 2005, 2010a). However,owing to the higher burden of TB in Zambia that has been

exacerbated by the HIV pandemic (Kapata et al. 2011), the

programme has suffered major setbacks mainly because

most of the donor support is targeted at controlling the TB

and TBHIV burden. Health Initiatives such as the Global

Fund to Fight AIDS, Tuberculosis and Malaria (GFATM)

and the Presidents Emergency Plan for AIDS Relief

(PEPFAR) immediately after the re-organization led to

improving TB programme specific activities, the leprosy

control activities suffered because these funding mecha-

nisms concentrated only on targets that were specific for

TB and TBHIV control. Leprosy can be used as a case

example of a neglected disease as classified by WHO.Accurate CNRs for surveillance for any disease are

crucially dependent on a series of factors: clinical aware-

ness clinical acumen of clinical officers and doctors,

diagnostic and laboratory facilities, adequate record keep-

ing and reporting and surveillance systems, all of which are

deficient on the NTBLP. In Zambia, there are insufficient

numbers of trained clinical and laboratory staff, poor

laboratory capacity and facilities to support the leprosy

diagnosis and follow-up. Furthermore, the skills for the

healthcare providers to diagnose leprosy are very limited.

Currently, there are no quality assured leprosy-specific

laboratory services to support diagnosis at any level of

care. Social stigma still exists and patients with leprosy arereluctant to seek health care and may present late. The loss

of the leprosaria in Zambia has led to declining levels of

medical care for leprosy patients; however, it is important

that these services are re-organised and provided within

the general health system in an integrated manner but

ensuring focus on leprosy is and other diseases of public

health importance is not lost.

There is need to improve diagnostic capacity and raise

the index of suspicion in health workers so as to early

detect and deal with the disease before the situation

deteriorates and case rates go above the elimination

threshold. The knowledge levels of health workers to

clinically diagnose leprosy need to be improved, and inaddition, a laboratory network to support leprosy control

activities and for quality assurance is necessary. Commu-

nity awareness campaigns on leprosy are almost non-

existent. This needs to be addressed so that the clients

know how to identify the disease and report to healthcare

providers early. This should be coupled with antistigmat-

isation messages for the general public. Given the Zambian

situation, the neglected tropical disease framework should

be applied to ensure that control efforts of leprosy are

sustained and that the disease is kept below the WHO

elimination thresholds. Surveillance of leprosy needs to be

improved by to ensure complete and accurate reporting.

Routine surveillance data available are inadequate toclearly understand the current burden; therefore, leprosy

prevalence surveys using modern tools such as PCR based

test should be explored in countries such as Zambia, where

leprosy problem may be re-emerging as an important

public health problem.

The prevalence of HIV was higher in leprosy patients in

rural Zambia (Meeran 1989). This is contrary to current

WHO views, which state that there is no association

between leprosy and HIV. Immune reconstitution inflam-

matory syndrome (IRIS) has been reported where leprosy

has been unmasked in patients on antiretroviral treatment

(Massone et al. 2011; Rao et al. 2012). Although there

has been insufficient evidence in the past to show closelinkages between leprosy-HIV co-infection, with the

introduction of HAART for management of HIV, IRIS

because of leprosy is manifesting, and therefore, it is

important for all clinicians and care providers especially in

high HIV endemic countries to screen for leprosy in all

patients (Miller 1991; Ministry of Health 2010b; Massone

et al. 2011; Sopirala et al. 2011). More clinical, immuno-

logical and epidemiological research should be



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conducted to understand further the co-infection of

M. leprae and HIV; data on co-infection with HIV should

be included within routine leprosy surveillance data and to

further study epidemiological relationships.

In conclusion, whilst Zambia has achieved WHO targetsfor leprosy control, leprosy prevalence data from Zambia

may not reflect the real situation because of challenges in

data recording, laboratory services and surveillance.

Increased investment into laboratory infrastructure and

capacity development in terms of training are required for

more accurate surveillance of leprosy in Zambia.

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Corresponding Author: Nathan Kapata, National TB and Leprosy Control Program, Ministry of Health, Ndeke House,

P.O. Box 30205, Lusaka, Zambia. Tel.: +260 211 25 3040; Fax: +260 211 253344; E-mail: [email protected]




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