LEPROSY
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- Title
- LEPROSY
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RF_DIS_8_A_PART_1_SUDHA
Leprosy Archives
INTERNATIONAL
LEPROSY ASSOCIATION
Preserve Them!
INTERNATIONAL
COUNCIL ON ARCHIVES
History is our guide to the future, for there can be no vision
without a sense of history”
Kofi Annan, Secretary-General, United Nations, 1998
Donated by Dr. V Benjamin on 24/12/2004
The Global Project on the History of Leprosy exists to help
ensure that the legacy of the human experience of leprosy
i survives.
' The four project areas are:
H To locate existing historical resources and make a
■
database. This will create a pathway for future
researchers to study and discover leprosy’s rich history.
To collect video testimonies of people affected by leprosy.
This will add a living history dimension to leprosy.
To give advice on the good storage of leprosy archives and
historical resources.
To put together information on the legal and social
discrimination faced by people affected by leprosy.
The purpose of this booklet is to help fulfil the third task and
assist with the first.
For more information please contact:
ILA Global Project on the History of Leprosy
Euston House
24 Eversholt Street
London NW I I AD
United Kingdom
Tel: +44 20 761 I 8861
Fax: +44 20 761 I 8562
Email: info@leprosyhistory.org
URL: http://www.leprosyhistory.org
project is supported by the Nippon Foundation
Contents
■
Why bother?
|2
What?
3
I
Who Cares?
9
Now what?
ff?
The Basics
TE
For your eyes only!
n?
Who will give advice?
Sort it out!
Acid Free Paper Suppliers
8
Acknowledgements
You can help to ensure that
leprosy is properly
documented by saving the
archives in your care and
ensuring that they are there
for people in the future to
learn from.
Leprosy is a disease with a long history connected with many
countries. It has influenced kings, shaped communities and
formed attitudes. It has brought out both the best and
the worst in humankind: personal courage, loving care, and
scientific perseverance on one side; cruelty against fellow
human beings on the other.
In much of the world it is gradually being conquered, but it
leaves behind it a knowledge and an experience which is of
great medical, historical and sociological value.
You can help to ensure that it is properly documented by
saving the archives in your care and ensuring that they are
there for people in the future to learn from. Without
them there will be little to document the progress of the
disease as the memories of those who have experience of
it, either as patients or carers, are lost. Bear in mind
that good record keeping for organisations will also
save money. If you cannot house the material safely or
have concerns that it may not survive, consider offering it to
another archive or library.
What are archives? Technically they are the original, no longer
used, records of an organisation or individual which are kept
because of their continuing interest and relevance. Archives
come in many forms.
In organisations (e.g. charities, hospitals, government
offices etc).
•
financial or legal records
•
property deeds outlining ownership
•
minutes of meetings
•
admission/discharge records or clinical treatment records
•
key policy files/correspondence
•
patient records
Individuals (e.g. those who have had, or have leprosy. Also
carers, medical researchers, health care workers, politicians,
administrators and those involved in any way). Their archives
may include any of the following:
•
letters or notes which are important in that they may be
about key events in a career, or contacts with significant
people in the leprosy field
•
papers of importance from committees attended, the
groups they have been involved in, the places they have
visited or the contacts they have made.
•
detailed observation records or medical notes
•
photographs of people and places
•
recordings, films or videos, especially of personal
interviews
cares?
Archives are of importance to different groups of people at
different times.These include:
•
administrators who use records and historical material
for future reference
•
historians of leprosy, interested in the medical history and
social, economic and other aspects
•
biographers who wish to learn more about people or
institutions involved in leprosy
•
individuals who have been involved with the communities
or who may be searching for information about members
of their own families
•
media researchers, both radio and television who may have
an interest in the survival of communities or the disease
Keeping selected archives will
•
save money for organisations in the future through
reducing storage space as well as through using better day
to day administration systems
•
ensure the survival of important material to document the
history of leprosy
•
concentrate effort on essential issues
•
Help with health education and training by providing
sources of background materials
Sort it out!
What can be destroyed?
Everyone has records of one sort or another. Many of
these do not need to be kept. You can’t keep everything
but here are some hints about what you should keep.
It doesn’t have to be old to be kept. Consider how useful
something may be in 10/20/50 years time.
For organisations
Many organisations accumulate records but don’t have a
system for their selection or long-term storage. Under
standably, they are more interested in the treatment of
leprosy today than keeping archives. This makes life much
more difficult for anyone wanting to do research later.
Have a system for keeping and for throwing out records.
This should involve regular sorting and storage of files
by an appointed person. Ideally this should be introduced
after consultation with a qualified archivist/records man
ager. The following guidelines give an idea of the main types
Sort it out!
of records that any organisation should consider preserving
permanently. All these can be in either paper or electronic
format (if regularly updated) or both.
Always keep the original if at all possible. It is authentic while
a copy is not.
• minutes of boards/committees
• departmental and administrative papers
• annual reports/special reports
• financial records/annual audited accounts
• legal agreements/contracts etc.
• building works/plans
• key policy files/correspondence
• management records
• papers relating to important events
• relations with government.WHO/ILA/ILEP members,
charitable, religious or other institutions
• press/media contacts including press releases
• publicity material
• newspaper clippings
Sort it out!
For personal papers
What should be kept depends on the person and the impor
tance of their work. Often However, papers of great value to
researchers are to be found in unlikely places. The following
are general guidelines for the kinds of papers that may be
worth preserving.
• letters to/from colleagues/organisations and
possibly family (including letters of congratulation/
condolence etc)
• records kept as a member of committees/organisations (not
necessarily just minutes and agenda but related documents
and reports).
• legal records, ownership of property, finances etc.
• records relating to appointments, degrees, honours, awards,
career in general
• diaries, especially if not simply appointments/lists
• calculations and data for published papers
• research notebooks, memoranda, research notes, project
papers
• lectures, talks, speeches, broadcasts and unpublished papers
including draft articles
• drawings, photographs, film, tape recordings
• list of publications/CVs
Sort it out!
What can be destroyed?
It is best to take advice from an archivist or records manager
(contact either your national archives or a local archive)
before throwing anything away. A few general points how
ever, are given below. Also, remember to make a list of
anything you decide to throw away; not only will it help future
researchers to know what was there but it will also form the
basis for knowing what to throw away in the future.
Most of the following can be thrown away but only after it
has been carefully checked
• duplicate copies of reports, publications etc (but bear in mind
they may be useful to another institution)
• manuscripts of published papers (keep only if the text is very
different from the published work)
• multiple drafts of anything (unless the development of an
idea or work is of key importance. Depending on the
person/institution it may not be necessary to keep even one
copy, although a list of publications is always useful)
Sort it out!
• fully published data (but in some cases samples or
significant experiments may be saved)
• page and galley proofs
• routine/daily correspondence and papers e.g. arrangements
for travel, cheque stubs, all the paperwork associated with
attendance at one meeting
• printed matter circulated for conferences etc.
• appointment diaries (unless the person is very famous and
likely to be the subject of a biography)
• agenda papers/miscellaneous committee records and
circulars (unless it is the formal record of the event)
• references
• offprints of articles by others (but not if part of a group
of related papers e.g. part of a research topic or included
amongst correspondence with the author, or if the
publication is rare or hard to obtain)
Now what?
Never update, alter or
correct a document,
even if it appears to
be wrong. If necessary
attach separate notes,
signed and dated, with
your views on what is
correct.
Here are some guidelines on what you should do with records
that you have decided to keep.
Even with limited resources your efforts to keep important
records will not be wasted and the information will be avail
able for years to come.
Care and Management
• make a list of everything to be kept
• keep all the material together (it forms a whole) and do
not separate, lend, sell or destroy any part of it; separating
even damaged material from its original place may destroy
evidence
• keep them in the original order - it will be helpful to
future researchers. For instance, don’t be tempted to put
all similar materials together, such as invoices, or letters of
condolence, if they are not already arranged like that
Now what?
• never update, alter or correct a document, even if it
appears to be wrong. If necessary attach separate notes,
signed and dated, with your views on what is correct
• seek advice on the best way to catalogue the material
so that it is easily accessible to the owner and to any
researcher in the future. This also provides security as
uncatalogued material is at risk from accidental loss or
deliberate theft
• encourage good practice in creating records as well as
keeping them; encourage regular records management to
avoid future problems of selection and disposal
• keep computer disks and tapes. Also keep any paperwork
that goes with them as this may be crucial if the disk or
tape becomes technically outdated and no longer readable
with current machines
• identify photographs with dates and names on the back in
pencil whenever possible
Now what?
Practical care
• store all material on shelves in boxes with lids. Some
of the greatest threats to archival material come from
light, water, insects and dirt. The best boxes are acid free
(made from rags not wood pulp) but if you cannot get
these, use the strongest locally available. Maps should be
stored flat or rolled round in acid free tubes.
Acid free folders can be used to wrap individual bundles
of paper. Also it may be cheaper and easier to get acid
free paper to line boxes and tubes.
Acid free paper and boxes may not be easy to buy or recog
nise. If your stationer cannot help you, try contacting your
national archives for advice. See page 17 for more details.
• use acid free paper (if possible) for important documents
such as minutes etc.
• store all material at least 15cm (6 inches) off the floor to
protect against flooding
Now what?
Store all material at
least 15cm (6inches)
off the floor to protect
against flooding.
store archival material in secure, stable, cool, dry and clean
conditions. If the temperature can be kept the same, records
last a lot longer (especially photographs and films)
than if it changes with the time of day and the seasons.
Monitor the conditions if possible with a thermometer and
hygrometer. The ideal conditions for most types of material
are no more than 18° C and no more than 60% relative
humidity.
when creating records of importance use a fountain pen.
Avoid the use of biros, felt tip pens or magic markers, all
of which fade.
only use pencil when writing on existing documents
don’t repair materials with sellotape, scotch tape or other
sticky tape
don’t store records in plastic files, or use any materials
which degrade or rust such as staples, lever arch files or
metal film containers
make sure that photocopiers are well serviced for copying
records (such as newspaper cuttings and other delicate
records)
handle the material with care, do not let readers use
uncatalogued material and supervise them while they are
using original material.
basics
DO
Put records in boxes with lids
Adopt a system for regularly keeping and getting rid of stuff
Keep the temperature as stable as possible
Keep originals not just copies
Keep stuff together
Keep a list of what you keep and what you get rid of
✓ Use acid free paper if you can for making minutes Tell us
(ILA/ICA) about your collection so that we can let
others know about it!
3
asics
DON’T
X Alter records
X Write on existing records in pen
X Rearrange files
X Just keep piles of paper on shelves
X Throw it all away if you haven't enough space - find
somewhere else to keep your archives
X Use biros, marker pens, etc. if you can help it for making
important records - fountain/ink pens are best
For your eyes only!
There is frequently correspondence or documentation
such as case notes, which is of a sensitive nature.This may
be due to:
• comments on colleagues, relations or friends,
• individual sensitivity such as medical information/
relationships with others/compromising information
• semi-official business of outside organisations
• relations with government or other organisations which
may contain confidential information
The first reaction may be to destroy this but it is better to
discuss the problem with an archivist or records manager
who will be used to dealing with this kind of material.
Bear in mind that with the passage of time even very
confidential matters become less sensitive. It is preferable
to plan restricted access or closure periods if necessary
than to destroy evidence forever. Many public organisa
tions operate a closure period of 25-30 years before
information which has not already been in the public
domain, can be seen by researchers. Information about
the health of individuals may well be kept closed for a
longer period. If material is to be deposited elsewhere
it should be discussed with the archivist who will have
responsibility for administering the access rules.
Advice should be sought as early as possible from a profes
sional organisation or a local archival institution. Addresses
can be sought from national, local and regional archives or
libraries. Contract archivists can sometimes be employed
for a short time for particular situations.
The international organisations listed below can also be
contacted for help.
International Council on Archives (ICA);
60 rue Francs-Bourgeois, 75003 Paris, France
(e-mail; ica@ica.org) for information on regional and local
archives as well as archival advice
International Federation of Library Associations (IFLA);
IFLA-PAC, Bibliotheque Nationale de France, 2, rue Vivienne,
75084 Paris cedex 02, France for information on regional
and local libraries as well as archival and library advice
International Records Management Trust;
12 John Street, London WCIN 2EB,
United Kingdom
(e-mail; irmt@sas.ac.uk)
ILA — Global Project on the History of Leprosy,
Wellcome Academic Centre, Euston House,
24 Eversholt Street, London, NW I I AD, UK.
Tel: +44 (0)20 761 18861
Fax: +44 (0)20 761 18562
Email; info@leprosyhistory.org
URL http://www.leprosyhistory.org
This project will end August 2002.
Acid free paper suppliers
To find acid free paper try contacting your local,
good stationer. If they cannot help contact your
national archives or library for advice.
Listed below are three international suppliers.
PEL
Shelfanger, Diss
Norfolk
IP 22 2DG
UK
Tel:+44 (0)1479 651527
Fax: +44 (0) 1379 650582
Email:
Atlantis France
26 rue des Petits-Champs
7500 Paris
France
Hollinger Corporation
P.O. Box 8360
Fredricksburg
VA 22404
USA
This booklet has been printed on acid free paper
Acknowledgements
This booklet is the result of collaboration between the
International Leprosy Association Global Project on
the History of Leprosy and the International Council
on Archives.
We would especially like to acknowledge Helen Forde,
Head of Preservation Services, Public Records Office,
United Kingdom;Julia Sheppard,Archivist,Wellcome
Trust, UK and Zoe Heming, ILA Project Assistant for
their contributions in the preparation of this booklet.
Cartoons by Steve Simpson
Design by Chapman Design
http://www.chapmandesign.co.uk
50 YEARS: COMMEM q
^\\JE SERIES-2
LEPROSY
IN THE
SOUTH-EAST ASIA
■
REGION
^^fei-1948
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WORLD HEALTH ORGANIZATION
HEALTH FOR ALL- All FOR HEALTH
50 YEARS: COMME/VJq
E SERIES-2
LEPROSY
IN THE
SOUTH-EAST ASIA
REGION
®1948
0'1998
WORLD HEALTH ORGANIZATION
HEALTH FOR ALL- ALL FOR HEALTH
Regional Office for South-East Asia
New Delhi
1998
Message
Leprosy has, for ages, been one of the major public health problems
in several countries of the world including those in WHO's South-East
Asia Region. However, as we approach the new millennium, it is
encouraging to note that, for the first time ever, the magnitude of the
leprosy problem appears to be declining. This has been made possible
with the discovery of the multi-drug therapy (MDT) regimen in the
early 1980s, the commitment of governments and the dedication of
health workers in controlling the disease.
Yet, while the progress has been gratifying, there is no room for
complacency. The challenge of responding to the needs of the already
disabled remains an important and difficult one and needs to be
addressed through an intersectoral, community-based approach with
full recognition of cultural and cost considerations.
There are still many hurdles to be overcome to achieve the leprosy
elimination goal of one case per 10,000 population by the year 2000.
The South-East Asia Region accounts for 66% of the world's leprosy
cases. The task ofachicving the elimination goal will therefore require
intensified efforts by countries and by all those involved in addressing
the challenge. WHO affirms its commitment to support Member
countries and communities in their efforts to control leprosy. What we
need to do is to establish and strengthen partnerships with all concerned
in order to harness the needed resources, and to reinforce the
determination of Member countries to conquer leprosy. We also need
the support of individuals and communities in understanding the disease,
and in enabling those afflicted to sustain the required treatment.
Leprosy is no longer the concern of governments or the health
community alone - it is everyone’s concern requiring a multi-sectoral
effort.
This information kit outlines the extent of the problem as well as the
strategies to deal with it. It is hoped that the publication will help
strengthen our el forts at all levels to eliminate leprosy from the Region.
Dr Uton Muchtar Ralei
Regional Director
LEPROSY IS CURABLE
o: wife
A major public
health problem
Although a cure was round for leprosy several decades ago, it is still a
major public health problem, particularly in several countries of the
WHO South-East Asia Region. Out of the five countries with the largest
number of leprosy cases in the world, Tour are in the South-East Asia
Region. These are Bangladesh, India, Indonesia and Myanmar which
account for an estimated 70% of the global registered cases, with India
contributing nearly 55% of the total. Every year around 400,000 new
cases continue to be detected. This constant increase is no doubt cause
for concern. But the optimistic news is that the total numbers cured by
the revolutionary multidrug regimen (MDT) increased from 1,100,000
in 1985 to 8,400,000 in 1997. And the registered cases declined from
3,800,000 in 1985 to 640,000 in 1997.
Despite the high numbers still afflicted, many countries such as
Bangladesh, India, Myanmar, and Nepal hope to eliminate leprosy by
the end of the millennium. Thailand and Sri Lanka have achieved the
elimination targets in 1994. Bhutan, Indonesia and Maldives arc
expected to achieve the elimination target of 1/10,000 population by
the year 1998. No cases of leprosy have been reported from DPR Korea.
Leprosy-the
cause and
transmission
Before we can begin to address the problem of leprosy elimination, it
is important to understand what causes leprosy, how it is spread and
how its transmission can be prevented.
• Leprosy or Hansen’s disease, is a communicable disease caused by
a microscopic germ, mycobacterium leprae.
• The leprosy germ is commonly transmitted through repeated and
close contact with the patient.
• Leprosy is less infectious than diseases like measles or tuberculosis.
What is more, all leprosy cases are not infectious - only 15-20%
cases are of the infectious type.
• As in the case of other diseases, personal and environmental hygiene
is very important to prevent transmission of leprosy.
• There is no effective vaccine that can provide protection against
leprosy.
• Leprosy is curable through a regimen known as Multidrug Therapy
(MDT) which must be taken for as long as prescribed.
The MOT
Experience
WHO Region
Although the regional situation is still quite serious, much progress
has been made since the 80’s with multidrug therapy (MDT) which
provided the necessary momentum to the leprosy control programmes.
Registered
cases
Prevalence per
10,000
Cases on MDT
MDT coverage
(%)
Cured with MDT
(cumulative total)
95,901
1.77
87,739
91.5
443,610
336
1.64
93,004
75.3
225,450
Eastern Mediterranean
23,005
0.54
19,083
83.0
52,784
South-East Asia*
638,296
4.60
631,913
99.0
8,373,122
Western Pacific
32,254
0.20
31,943
99.0
206,635
Total
926,259
1.67
842,438
91.0
7,988,404
Africa
Americas
*Data for South-East Asia is provided as of July 1997, for the other Regions, 1996
The overallMDTexperience Das Deeppositive:
The record of MDT in prevention of relapse and drug resistance has
been outstanding. MDT has cured patients in finite periods of time.
However, the duration of treatment is relatively too long for
multibacillary cases. Following the WHO Expert Committee meeting
in Geneva in mid 1997, the Simplified Treatment of Leprosy (STP)
recommended for multibacillary cases, reduced the duration of
treatment from 24 to 12 months with each dose given monthly.
» The success with MDT has brought leprosy control within the
mainstream of medicine and public health. This has enabled health
care to be provided within the general health services with the
emphasis on primary health care.
• Although MDT, applied sufficiently early, can significantly prevent
deformities, it cannot remove existing deformities. There are
estimates of about two to three million people who are disabled
physically and suffer socially due to past or present leprosy infection.
However, since 1982 the number of patients with disability declined
considerably.
• Therefore, the social and psychological problems due to
complications of leprosy need to be addressed even after completion
of treatment with MDT, through social and mental rehabilitation.
• MDT can drastically reduce the number of registered cases, but its
capacity to reduce incidence of new cases in the first five years of
implementation is limited.
The use of Special Action projects (SAPEL) in remote or difficult
areas along with Leprosy Elimination Campaign (LEC) can increase
community awareness and improve self-reporting of new and
unreported cases, and accelerate the achievements.
Programme
Management
To stimulate the leprosy elimination process, some innovative
approaches have been proposed and tried according to the situation,
conditions and available resources of each country.
Bangladesh • Upgradation of combined TB-leprosy services from central,
divisional, district and thana health levels to union-level; and of
the reporting system from the thana health level to the Central level.
• Prompt management of leprosy patients who delayed seeking
treatment, to reduce the number of new cases detected with serious
deformities.
Bhutan 6 Integration with general health services in leprosy hospitals.
• Detection and follow-up of leprosy patients in remote areas.
» Improved distribution and supply of MDT up to the health centres.
India
• Better coordination with NGOs, especially in case-detection, to avoid
duplication in the reporting system; and MDT supply.
• Special programme in the hyperendemic and remote areas of Bihar.
• Integrated approach in Tamil Nadu with prospects of introduction
to other states.
• Improvement in MDT distribution from the central to health-centre
level; and a more reliable reporting system.
° Emphasis on better coordination with NGOs; and case-detection to
avoid duplication in reporting system and MDT supply.
• Better systems of management and reporting at all levels.
• Extending target for achieving the elimination goal (prevalence rate
less than 1/10,000 pop.), from national to district level.
Maldives
Priority to management of surveillance in all health units.
Improved case-management and reporting systems in the islands.
Reliable MDT distribution in all remote areas (islands).
Myanmar
Fully integrated approach at the rural and subcentre levels and fully
de-centralized system up to subdistrict level (township).
Involvement of village midwives (the Red Angels/Red Loungies)
in case finding and distribution of MDT to individual patients.
' Upgradation of systems for management, reporting and supervision
at central, regional and district levels.
’ Closer monitoring of MDT distribution and supply.
• Coordination with NGOs in case detection to avoid duplication in
treatment, reporting system as well as MDT supply.
• Selection and appointment of experienced and committed national
consultants for advising on the leprosy programme.
SriLanka
• Management of, and sustaining the social marketing endeavours.
• Partial integration of leprosy control into the PHC; prevention of
disability and emphasis on community-based rehabilitation (CBR).
• Institution of improved surveillance systems in primary health centres
and other health units.
• Emphasis on more reliable reporting and MDT distribution systems.
TiiaHanii ’ Prioritizing post-elimination strategies with special attention to
surveillance, fixed-duration MDT, Prevention of Disability(POD),
IEC in health centres and rehabilitation.
• Introduction of CBR in northern Thailand and, gradually, to other
areas.
Proportion of Registered Cases in SEAR Countries
(Total Registered Cases: 6,38,296)
Priorities for
future action
These include:
Intensification of monitoring and evaluation of leprosy- elimination
activities in highly endemic countries and states.( > 3/10,000 pop.)
Introduction and adoption of the post elimination strategy in the
low endemicity countries, and in countries where the elimination
target of 1/10,000 pop. has been achieved.
' Continuation of the Leprosy Elimination Campaign (LEC) and
Special Action Projects (SAPEL) to detect hidden/undetected cases.
’ Introduction of a nationwide LEC is planned in some countries like
Bangladesh, Indonesia and Myanmar during 1998, along with
observation of a Leprosy Week to provide focus on key issues.
The real
challenge of
leprosy
Leprosy has long been considered a dreadful and feared affliction.
There is still a strong social stigma attached to the disease^ As a result,
those with leprosy hide their symptoms and diagnosis from families,
friends and employers instead of seeking treatment.
The medical, socialandpsychologicaldimensions:
The medical dimension involves early detection, proper and
sustained treatment with the MDT regimen, or physiotherapy,
treatment for ulcers, and physical rehabilitation.
The social dimension involves love and support from families,
society and employers to overcome humiliation and the need to hide.
1 Patients undergoing treatment could develop psychological problems
which may require rehabilitation through community-based
rehabilitation programmes. This helps them live normal and
productive lives within society.
Leprosy: the
myths and
reality
If leprosy is to be successfully eliminated, we must ensure that the
disease is demystified through correct information dissemination:
’ Contrary to popular belief leprosy is not hereditary. It can affect
anyone - the rich and the poor, the old and the young.
Leprosy is not a curse from God, or a punishment for sin.
It is not necessary to isolate leprosy patients. Leprosy patients
undergoing regular treatment must be encouraged to seek treatment
and live normal and productive lives with their families.
Some
important facts
about leprosy
Causes and prevention of deformities:
• Deformities develop because leprosy damages some nerves - thus
patients may develop claw hands, foot drop, etc.
• Deformities can be prevented through early, regular and complete
treatment. Some early deformities can be remedied through
physiotherapy and surgical interventions.
• Early detection with early treatment leads to early cure without
disabilities or any physical signs of the disease. " An early case of
leprosy is no longer a tragedy; what is a tragedy is no treatriient in
an early case of leprosy" - Dr.Hemmerijckx, famous leprologist
from Belgium.
• Ulcers are caused when the disease affects the nerves and leads to
loss of sensation so that the patient is unable to feel heat, cold or
pricks from sharp intruments and can get injured without being
aware of it.
Management
problems in
leprosy control
The progress of leprosy elimination activities in the SEAR countries
has been rather slow because of several factors.
The mainproblems are:
- Financial constraints due to the low priority accorded to leprosy
control.
• Shortage of qualified leprosy workers, coupled with frequent
turnover o f staff, and the complexity of the reporting system.
• Poor management of drug distribution from the national level to
the health centres.
• Inability to reach those in remote areas.
• Inadequate implementation and lack of other innovative approaches
such as LEC to detect hidden or unknown cases according to WHO
guidelines.
• Lack of active involvement of local authorities and community
leaders in control activities at the district and health centre levels.
The otherproblems facedbysome countries are:
Over dependence on NGO assistance for the control of leprosy.
Lack of coordination between NGOs and the government.
Difficulties in implementing the integration policy for leprosy
Strategies for
combating
leprosy:
A landmark resolution was adopted by the Fourteenth World Health
Assembly on WHO’s commitment to eliminate leprosy as a public
health problem by the year 2000 through theuscofMDT. Substantial
support of NGO's and an increased priority to leprosy elimination by
governments was also called for.
WHO pledged technical support and promised to mobilize and
coordinate resources to achieve the elimination goals of 1 case per
10,000 population by the end of the millcnium.
To attain this goal countries need to give attention to:
•
Effective surveillance systems for proper case finding and reporting,
with greater vigilance in endemic areas.
♦ Strengthening infrastructure of health facilities for diagnosis and
treatment, especially in difficult-to-reach cases and areas.
• Proper motivation and incentives for sustaining treatment.
•
Monitoring and follow-up of treated cases; estimation of hidden
cases.
• Securing NGO cooperation and assistance in capacity building.
• Ensuring an adequate number of trained and motivated doctors and
health workers dedicated to the cause.
• Strengthening facilities for the proper rehabilitation of leprosy
patients through physiotherapy and surgical interventions; and
imparting of vocational training.
* Ensuring cooperation of the private sector in the regular supply and
distribution of drugs.
• Designing and mounting regular information, education and
communication campaigns to educate people on the basic facts about
leprosy, and to generate community support.
WHO s role and
contribution
WHO works with countries to focus attention on the problems and
the issues of leprosy control and to promote action on managing
leprosy elimination programmes according to national targets.
WHO provides technical support and inputs, advises on surveillance
techniques and monitoring systems, assists in drawing up realistic
and achievable programmes, and helps in implementation and
evaluation strategics.
The role of the
community
and the
individual
•
WHO supports training and development of guidelines on leprosy
control including innovative strategics, and also collaborates in
research activities.
•
WHO also highlights the need for political commitment to the
programme goals, and promotes healthy policies and legislation to
ensure the rights of those afflicted by leprosy.
While governments and NGOs can do much to control and eliminate
leprosy, communities and individuals have a more critical role to play
in addressing the social dimensions of the problem. This must start
with a good understanding of the facts about the disease, its
transmission, spread and treatment. More importantly, they must
encourage the leprosy-afflicted to seek treatment early and give them
the love and support to sustain it.
Here is howyou can contribute:
■>
Educate yourself and share and discuss the correct information on
leprosy with friends and relatives.
• Protect yourself against leprosy by having yearly medical check
ups.
Be vigilant and watch out for the early signs of leprosy. I f you see
any signs go for an immediate medical examination.
Educate the family and community not to reject leprosy patients.
*
Accept leprosy patients and support them to lead happy, healthy
and productive lives.
Give equal opportunities for education, employment, and marriage
to leprosy patients and their children.
Howto
recognize
leprosy
Leprosy is curable at most stages with sustained MDT treatment.
However, MDT cannot reverse any existing deformities by the time
a diagnosis is made, and treatment begun. Hence, early detection is
very important for a complete recovery and for the prevention of
any deformity.
Suspectteprosywhenyousee anyone ormore ofthe following early
signs:
• A pale or red patch on the skin and a change in texture on any
part of the body.
• A raised or flat patch, which may be dry, shiny or smooth.
• A well demarcated patch on the skin which is insensitive to pain.
• Loss of sensation in certain areas of the body to touch, heat or
cold - either in the presence or absence of a patch.
° A lesion which does not itch.
However, all skin patches may not be leprosy. They could be due to
some other skin condition. It is always better to get them examined
by a doctor, or community health worker rather than to neglect them
Leprosy is
curable
Leprosy can be eliminated. What is needed is early detection,
early intervention, sustained treatment, and community support
throughout. Leprosy can be cured. But the real healing touch
must come from you.
WHO Country
Offices in the
South-East Asia
Region
WHO Representative
G.P.O. Box No. 250
Dhaka-1000, Bangladesh
WHO Representative
P.O. Box 175
Thimphu, Bhutan
WHO National Programme Officer
The Ministry of Public Health
Pyongyang, DPR Korea
WHO Representative
Rooms 533-35, 'A' Wing
Nirman Bhawan
New Delhi 110 Oil, India
WHO Representative
P.O. Box 1302
Jakarta, Indonesia
WHO Representative
P.O. Box No. 2004
Male 20-06, Maldives
WHO Representative
P.O. Box 14
Yangon, Myanmar
WHO Representative
P.O. Box 108
Kathmandu, Nepal
WHO Representative
P.O. Box 780
Colombo, Sri Lanka
WHO Representative
Ministry of Public Health
Soi Bamrasnaradoon
Tiwanond Road
Nonthaburi 11000, Thailand
Regional Office for South-East Asia
Indraprastha Estate, Mahatma Gandhi Marg,
New Delhi 110 002, India.
Designed and printed in India by React Advertising.
8000\E\01\98\ND
WORLD HEALTH ORGANIZATION
LEPROSY CONTROL:
EVERYONE’S
CONCERN
UNICEF
UNITED NATIONS CHILDREN’S FUND
REGIONAL OFFICE FOR SOUTH CENTRAL ASIA
NEW DELHI-110 003.
s™ vTv H"1™
<>26, V Main, I Block
Koramongaia
Bangalore-56Q034 India
jLvv>_
U-
n 1AOJL
EVERYONE’S
CONCERN
UNICEF
UNITED NATIONS CHILDREN’S FUND
REGIONAL OFFICE FOR SOUTH CENTRAL ASIA
NEW DELHI-110 003.
CONTENTS
Foreword
Introduction
3
.
4
Towards Eradication
7
Community Action
11
The Medical Role
14
Effects of Education
19
Voluntary Work
25
Leprosy and the Law
30
Communication for Control
34
Annex 1 Gandhi on Leprosy
Annex 2 Prevalence of Leprosy in India
Annex 3 Some Voluntary Organizations engaged in Leprosy Control
38
40
41
rTtr«T nsj qfrqrj TFUKIT
wxa
font-110011
MINISTER OF
HEALTH AND FAMILY WELFARE
INDIA
New Delhi-110011
FOREWORD
I am happy to letyn that the UNICEF is bringing out a publication oruLeprosy
Control on the occasion of 12th International Leprosy Congress being held in
India during February, 1984. The Congress is an appropriate occasion for all
those who are engaged in the work of fighting Leprosy, to get together, pool their
experiences and evolve strategies for attaining the national objective of eradi
cating leprosy. Leprosy is one of those fields where intensive research has re
sulted in the evolution of a strategy which can lead to the eradication of this
disease. It is now for all of us to intensify our efforts, educate leprosy patients,
advise them about the medicines and ensure that medicines are administered
regularly. Rehabilitating the cured patients would be another dimension need
ing attention of the planners, social scientists and medical professionals.
Leprosy Eradication Programme is one of the important programmes in
the Prime Minister’s 20-Point Programme and additional resources have been
provided to combat this disease. We have intensified our efforts to detect and
cure the patients suffering from this disease. I am sure the UNICEF publication
which is addressed to different categories of people like the health professionals,
the voluntary agencies, the mass media, the teachers in the medical profession
etc. would evoke discussion leading to action for the eradication of leprosy.
New Delhi,
February 3, 1984.
(B.SHANKARANAND)
INTRODUCTION
Leprosy is an ancient, and in many aspects incomparable, disease. A new
front in the battle against it was opened by the disco very of the bacillus causing it.
Vet the disease remains unyielding in many parts of the world. Despite the avail
ability of the technological means to control it, the disease still eludes even those
countries that have the needed financial resources.-
The obstacles are many. Leprosy is not yet considered a public health
priority by the policy makers. In consequence, anti-leprosy work fails to attract
the necessary budgetary support. The available leprosy services have remained
underutilised-as a result of ignorance about, and indifference to, early mani
festations and unexpected complications of the disease. An unfavourable sociopsychological environment i n which affliction by the disease has been associated
with social stigma, has reduced the chances of early diagnosis, the effects of
adequate intervention, and the prospects of sustained treatment.
Of the 15 million people the world over suffering from leprosy, nearly 4
million are estimated to be in India. And, as many as 20-25 percent of the newly
detected cases are children. Leprosy in the child represents nearly all the aspects
of the disease in the adult, with additional characteristics peculiar to itself. Next
to poliomyelitis, leprosy is the greatest crippier in the world. Physical deformity
and disability are major consequences of the disease. But early detection and
adequate treatment will.diminish the damages of deformity. For a person suffer
ing from leprosy, rehabilitation should start when the diagnosis is made. Re
habilitation implies the physical,psychological and social restoration to as near
normaleyas possible, of treated patients. It is with reference to their position in
the home, in society and at the workplace. To achieve this, treatment of the phy
sical disability is obviously necessary but it must be accompained by the edu
cation of the patient, the family and the community, so that they will not only
accept him but also assist in completing the restorative process.
The link between an environment of poverty, with its implications for the
quality of human life, and the occurrence of leprosy is beyond doubt. Poor
housing, commonly linked to overcrowding, insanitary conditions, inadequate
4
hygienic, practices, a precarious nutritional status, lack of educational oppor
tunity and similar drawbacks are closely correlated withill health in general, and
leprosy in particular. Any effective approach to leprosy control has therefore to
address these intimately inter-related factors which are but reflections oflow
level ofsocio-economic development. It is becoming increasingly clear that sim
ple and uniform answers to leprosy are inadequate. Renewed efforts are being
made to understand not only its medical ramifications, but also the social, eco
nomic, cultural and psychological factors that interfere with its control.
To control a chronic disease like leprosy, a permanent and reliable commu
nity-based health service infrastructure is of utmost importance, for detection,
uninterrupted treatment,.surveillance and other essential public health mea
suresand complementing activities. Thus, to be effective, leprosy-specific health
services must be close to the people for whom they are meant. The most pro
mising strategy to overcome constraints in the way of leprosy control seems to be
a functional tie-up with the primary health centres. The primary health care app
roach, involving the active participation of the community, may well be appro
priate for effective leprosy control. Such an approach integrates, at the
community level, all the elements necessary to make an impact on the health
status of the people, bringing together preventive, promotive, curative and re
habilitative health measures as well as supportive development activities in
allied fields.
It is common experience that patients present themselves for examination
only after they themselves are somehow convinced that they have leprosy.
Consequently, the diagnosis is delayed, the patient may have infected others,
and in many cases permanent nerve damage leading to disability and deformity,
may have set in.
The control of leprosy is rooted in health education, early diagnosis using
active methods ofpase detection and early treatment of all forms of the disease.
An effective health care programme with a well planned health education input
will encourage people to voluntarily report any newly-noticed skin patch. All t
sectors of the community are equally importantas far as health education is con
cerned. Co-ordinated health education activities should be carried out by ths
public health services in charge of leprosy control programmes, school health
officers and private organizations concerned with leprosy in the community.
Medical and para-medical personnel as well as education authorities, school
teachers, the media, voluntary agencies and the community as a whole must be
aware of the importance of early diagnosis, regular treatment and social
acceptance ofleprosy patients. They key to leprosy control is the attitude of the
community.
A breakthrough can come through a change in the knowledge, attitudes
and practices of society, and in particular of various influential-groups including
of course, the health personnel. This publication is intended to promote the pro
cess of such change.lt is addressed to different segments of society-thehealth
profession, the education system, voluntary agencies, the media, the policy mak
ers and the general public. It is hoped that the discussion that follows will
stimulate the reader to make his or her own invaluable contribution to leprosy
control.
TOWARDS ERADICATION
K C Das
Leprosy was prevalent in ancient India. References to the disease are found
in old Indian literature like Charak and Sushrut Samhita, Bhagwat and
Manusmriti dated as back as 400 B.C. Two types of the disease were described.
Establishment of social relations by hiding the disease was considered to be a
sin. Ayurvedic treatment was given. Some of those drugs are used even today by
the practitioners of that system.
In the years before political Independence, the disease was tackled mostly
by foreign missionary organizations and some local voluntary’ bodies supple
mented by limited activities of Government, Municipal Corporations and
District Boards. By 1947 when India became free, there were 152 leprosy homes
and hospitals with 19,600 beds and 1,203leprosy clinics with about 12Q000 cases
treated annually The method of work was propaganda, treatment and survey
I PTS method). The drug of choice was Hydnocarpus oil used by injection and
occasionally by massage in addition. The period of treatment was almost
throughout life. The Lepers Act 1898 was also in force. Most of the patients were
then isolated in leprosy homes, hospitals or colonies. Returning to the family
was rare. There was a great prejudice against the disease. Due to prolonged
sickness and ineffective treatment most of the patients ultimately developed
gross physical deformities. Sulphone came to be used as an antileprotic drug by
about 1948The National Leprosy Control Programme (now named the National Lep
rosy Eradication Programme) was launched in 1954-55, in the latter part of
India’s first Five Year Plan. The modes of control chosen were the early de
tection of cases through house to house surveys; education through individual
and mass communication for community involvement in removing the social
stigma and ostracism associated with the disease and in encouraging voluntary
reporting of cases; and mass treatment through a domiciliary and ambulatory
pattern with oral dapsone tablets. This method of Survey, Education and Treat
ment, called SET in short, formed the basic pattern of leprosy control work.
Leprosy control units, SET centres, training centres, temporary hospitalization
wards, urban leprosy centres, voluntary SET centres, district leprosy units.
leprosy training and research institutes were established in different parts of the
country in subsequent plan periods. Rehabilitation is a very difficult and costly
7
effort. The emphasis therefore is on preventive dehabilitation, reserving re
habilitation for the few who have been already dehabilitated.
The Magnitude
The first authentic estimate of the magnitude of leprosy problems in the
country was made in 1954 by the Committee of the Government oflndia for the
control of leprosy. The estimated number of cases then was 1.5 million, of which
about 1,20,000 were patients receiving treatment. The problem was assessed
subsequently and the estimated number of cases was 2.5 million in 1961, 3.2
million in 1971 and 3.95 million in 1981. The average proportion ofinfectious
cases was 25 percent, the deformity rate was 25 percent and childhood rate 20
percent. Of late, the rates seem to have reduced marginally. The latest position is
that out of 412 districts of the country 212 districts have a prevalence rate of 5 and
above per 1000 population. About 400 million people live in those districts.
Most of the 3.95 million cases belong to this population. On an average about
0.5 million additional cases are identified annually and about 0.3 million cases
are dropped from the list, discharged after cure, or due to death or other reasons.
About 3.1 million cases are on record now, of which, about 2.9 million are
receiving treatment.
Operational Pattern
The main components of the National Programme are case detection,
health education, treatment, prevention and correction of physical deformities,
training, rehabilitation, research and assessment. These are done by .trained
medical and non-medical personnel working in various government and volun
tary leprosy centres and institutes established under the programme, and also by
some general health and leprosy institutes established outside the programme.
Trained leprosy workers are provided at the ratio of one worker to a rural popu
lation of 20,000 to 25,000, and one worker to an urban population of 30,000 to
70,000. In leprosy endemic areas in difficult terrain, there is one worker to a
population of 5,000 to 10,000. For every five to seven workers, there is a trained
non-medical supervisor, and for every three to four such non-medical super
visors, a trained doctor, a laboratory technician and health educator are in po
sition
Recently, the District Health Officer has been made responsible for super
vision and administration of the entire Leprosy Eradication Programme in the
district. This step has made for unified control and better results are obtained
through improved supervision and proper use of available staff.
8
Approach
The SET approach is as follows:
Survey
This is done house to house, at schools, by family visits, and through health
educational approaches, voluntary reporting, contact examinations and referral
services. Diagnosis is confirmed by the doctor and sometimes, in the absence of
a doctor, by the non-medical supervisor.
Education
This is imparted through individual and mass communication by utilizing
coloured picture cards of patients with hints of diagnostic signs and symptoms,
pamphlets, posters, and booklets on leprosy. Individual and group talks are
arranged. The mass media like radio, television, newspapers, and journals are
used.
Treatment
The line of treatment is indicated by the doctor or the non-medical super
visor and delivered by the leprosy paramedical worker who holds weekly or
fortnightly outdoor clinics at vantage points in the area. Domiciliary treatment is
also given through the network of outdoor clinics. Segregation of leprosy pati
ents has no place in the modem leprosy control programme. Hospitalization for
temporary periods to tide over the crisis in respect of a few leprosy patients who
suffer from complications is necessary and facilities are made available for such
patients for special care and treatment Clinics are held at health centres and
hospitals. Complicated cases are treated in leprosy hospitals or under the close
supervision of the medical officer of the field unit Monotherapy with Dapsone
tablets takes a long time to attain negativity in respect of infectious cases. Multi
drug therapy (with DDS in combination with Rifampicin, Clofazimine or Prothiconamide and, when needed, INH and Thiacetazone) has been introduced to
bring down infectivity expeditiously and to thwart emergence of drug resistance.
The new multi-drug regimen is implemented under the close supervision of the
doctor.
Policy Changes
A working group set up by the Government in 1981 made far-reaching re
commendations on a package of public policies and practical approaches nee
ded for leprosy control. In consequences a National Leprosy Control Comm9
ission with the Union Health Minister as Chairman, and a National Leprosy
Eradication Board under the chairmanship of the Union Health Secretary have
been established. Other changes in the direction of systematic detection cam
paigns, multi-drug therapy, medical education, support for voluntary work,
legislative measures, mass education campaigns and research activities are
underway.
Dr K C Das is Assistant Director General (Leprosy). Ministry of Health and Family Welfare.
Government of India, New Delhi.
10
COMMUNITY ACTION
K V Desikan
As you stand in the street, waiting for a bus, a hand is thrust towards you, a
hand of an annoying beggar, a hand with distorted fingers and festering sores.
You loathe to look at the face. You only screw up your own and with a feeling of
disgust and pity, hastily toss a coin at him and turn away.
You know the person is afflicted with leprosy, a disease which is feared and
abhorred. Your act of charity might have been an impulse to help or to get rid ofa
wretched persosn. Your coin might help him to buy a meal, but it will not help to
solve the problem that has plagued the community for generations. By turning
away your face, your eyes, your attention, you cannot elude this human prob
lem. Something has to be done. The society and the community has to accept the
full share ofthe responsibility and every individual member ofthe society has his
own part to play.
“What else can I do?” you will ask, since you are ofthe workaday world and
not a saint or a sanyasi to go and serve the “lepers”. It is true that great men and
women have poured their compassion to relieve the sufferings of these unfor
tunate victims, but the contribution that could be made by the society would go
to the roots of the problem and eliminate it completely.
The modest first step that everyone should take is not to use the word
'leper”. It is an odious term associated with indignity and degradation rather
than a word used to describe a person afflicted with a disease. A “leprosy patient”
is a better term. Some people prefer to avoid the word “leprosy” itselfand call it
“Hansen’s Disease”. Changing the name alone does not improve matters. The
attitude must change. There is no reason for any special prejudice against leprosy
ora person afflicted by it. It is a disease like any other, caused by germs. Anyone
can catch the infection irrespective of his social and economic status. Fortunately it is not highly infectious and only about one in five is mildly contagious,
the other four being completely non-infectious. It is not hereditary. Nobody is
born with leprosy. Some essential facts about leprosy must be understood before
one considers what should be done to solve the problem or help the diseased
persons.
Society recognizes leprosy by the badly disfigured or deformed persons seen
11
in public places. This category forms only about three to four percent of the total
number of patients. If we focus our attention, as we do, to this visible tip of the
iceberg, we are only deceiving ourselves.
There is another hard-to-believe truth about leprosy. It is a scientifically
established fact that a majority of those begging in the streets with advanced
deformities are not infectious, while the infectious'cases are moving unnoticed,
spreading the diseas'e. Since such persons have no recognizable disfigurement,
we do not recognize them as a source of the disease. In many instances, the
patient does not know that he or she is suffering from leprosy since the disease
does not produce any pain or discomfort. It first manifests itselfas a slightly light
coloured patch on the body or as a slight discolouration of the skin. These skin
changes are neither painful nor itchy; so the patient ignores them. When the
disease advances, the skin changes lead to disfigurementand deformities. At this
stage, the patient gets noticed by others, but by this time in the course of months
or even years of development of the disease, the patient has spread the infection
often Unknowingly.
This is how leprosy erupts, spreads and manifests. As this process is surre
ptitious, any attempt to stop it needs the full cooperation from the people and
that is why leprosy is everybody’s problem. The strategy adopted by the Govern
ment under the National Leprosy Eradication Programme is to trace every case
of leprosy and treat the person so that the disease does not advance in him and
does not spread to others. There are effective drugs against leprosy and disease is
completely curable at any stage. However, we have to catch it early and knock it
down before it produces any havoc.
It requires trained personnel to detect in early stages and cannot be recog
nized by the patient himself. So the task calls for systematic examination of the
entire population-men,,women and children. Such a mass survey could be
undertaken only with the full cooperation of the entire community. Therefore
^one important duty of every individual is to spread this message not only to
W members of his own family, bqt to all his neighbours, friends and relatives.The
Government of India has spread out a vast'network of centres to cover a popu
lation of 300 million population in this “Trace and Treat” effort. This is done
mainly in villages. The cooperation of the village people has been encouraging.
However, in urban areas a greater effort is needed to involve the community.
Educated persons, youth, student organizations, social welfare workers should
come together and help in carrying out this campaign. Society has to be in
formed that leprosy is not a disease seen only in beggars and in slums, but in all
12
its segments. It is no shame to get checked by a doctor or a trained worker, to
exclude the disease. At the earliest suspicion, rush to the doctor as you would
rush for any other ailment.
Today there are new, very effective drugs against leprosy. Detected early,
there is a hundred percent cure without leaving behind any obvious marks on
the body. Even in advanced cases, the disease can be cured, only it takes more
time. Treating the cases helps also-in reducing or removing the source of infe
ction. So, if I or my family members should be protected against leprosy, the
persons known to be having the disease must be encouraged to get regularly
treated. The cooperation of the patient is therefore essential if the spread of the
disease is to be stopped.
How are we get the cooperation from the patients? Not with hatred, fear and
prejudice. Such hatred and prejudice will make him hide the disease, refuse
treatment and thereby spread the disease. There should be a balanced approach
so that he will cooperate to help himself and others. Once a person gains the
confidence that he will not be ostracised and penalized for catching a disease for
no fault of his. he will cooperate as much to his own advantage as to the benefit of
others.
To inculcate confidence in the patient, society has to throw away the base
less prejudices. The majority of the obvious and deformed cases who are not
infectious, should be accepted in society and given employment with the same
compassionate consideration as to persons disabled due to accident or injury.
Even those with active disease who are possibly infectious should not be shu
nned. They could continue in the avocation while under regular treatment and
should only avoid close contact with healthy persons, particularly children
including their own. Rehabilitation of disabled leprosy patients is an important
duty of the society, but a more urgent work is to see that leprosy does notspread
so that the need for rehabilitation is avoided.
Leprosy can be eradicated if the community works together with the health
authorities. The disease is to be fought with knowledge and not with prejudice
and false beliefs. It is a scientific truth that an infectious leprosy patient spreads
the disease, but it is a sociological fact that society actually helpshim to do so, by
fear, prejudice and hatred. The fear is more dangerous than the germ.
Dr K V Desikan is the Director of the Central Jalma Institute for Leprosy, Agra. New Delhi.
13
I
THE MEDICAL ROLE
R H Thangaraj
A large majority of the four million leprosysufferers in India are seen in the
hyperendemic areas of Tamil Nadu, Andhra Pradesh, Orissa and West Bengal.
The National Leprosy Control Programme has been in operation for over two
decades, but it has had no appreciable effect on the overall incidence of new
cases that appear. However, in some of the well-run centres, where an effective
programme has been going on for 10-15 years, the incidence ofleprosy has come
down-in other words,leprosy can be brought under control with the existing
meansand methods. But this will not prevent us from our search for more effect
ive and economical alternatives.
What can the medical profession contribute to the‘Control of Leprosy and
its Eradication by the year 2000 AD?’ Leprosy is more than a medical problem
but the problem is primarily medical and the disease is among the grossly
neglected subjects by the medical profession.
Leprosy control is based on the principles of early detection of cases and re
gular treatment of patients to bring down the quantum of infection and thereby
to reduce the transmission of the disease to heathy contacts. Let us consider
what health professionals can do in detecting the cases, in educating the public
and in effectively treating the patients. They should, first of all, be willing to treat
leprosy on par with other diseases if the leprosy control programme has to be
successful. The medical world should accept leprosy like any other disease and
this change in attitude towards leprosy should start at source-the teaching
institutions where young doctors and other paramedical personnel are trained.
It is a fact that not much time is devoted to leprosy in the medical colleges.
The young medical students should be convinced that leprosy is like any other
disease. They should be given adequate exposure during their clinical years, to
the various manifestations of leprosy, its complications and the treatment of
such complications. Short visits to leprosy centres could be arranged where
they can see a variety of cases. Guest lecturers from these centres could be
invited for clinical meetings, teaching sessions and discussions at the medical
colleges.
Though leprosy patients are usually seen in the dermatology out-patient
. 14
wards, screening patients for leprosy should be made a routine practice in the
general medical examination, likedooking for anaemia, clubbing, oedema etc.
It is common practice for students to devote more time on topics which are
likely to come up in the examination. Leprosy cases should be included in the
clinical examinations conducted at the end of the year. All possible encourage
ment should be given to the doctors who take up leprosy work.
A certain number of beds should be allotted in the general hospitals for
admission for complications like reactions and plantar ulcers. These beds sho
uld not be used for other patients while leprosy patients wait for admission. Basic
service facilities should be provided in all the centres, and these include physio
therapy (where care of anaesthetic extremities is taught so that mutilation does
not occur), facilities for providing simple protective footwear and laboratory
examination.
About 20-25 percent of patients have deformities which are the main cause
for the stigma attached to this disease. Much of the deformity is preventable if
only certain simple methods are followed. Even if deformity occurs, it can be
corrected. Patients with deformities of hand or foot should be seen in the ortho
paedic department, where special facilities should be available for instruction on
hand and foot care, as well as for management of complicated problems like
neuropathic disorder of foot which if detected early and treated promptly, will
obviate much suffering. Students are to be given adequate training in prevention
and management of deformities. Leprosy is one of the major causes ofblindness
in adults and it should be an important concern of the Ophthalmology de
partment
. The patients’ waiting-rooms are usually filled with health education posters
on nutrition, scabies, diarrhoea, and tuberculosis. For some reason, leprosy is
not elevated to that respectable position. Adequate measures should be taken for
display of information on leprosy in simple language. It is also the duty of the ~
health profession to educate the public about leprosy so that they may help in "
detecting the cases early. Early detection and regular treatment would mean pre
vention of much deformity and disability.
It is relatively more effective when health information comes from a me
dical person. There are many misconceptions among the public about the
nature of the disease: that the disease is hereditary, that it is incurable.that the
word leprosy is synonymous with deformity and disfigurement These wrong
15
t
beliefs only help to perpetuate the problem. The medical prefession should lead
the way in all attempts to remove such wrong notions. The television, radio and
newspapers should be made use of to disseminate scientific information on the
disease and the information should be given in simple language, avoiding the
technical jargon. The medical profession, which is very much respected by the
community, can also work through organisations like the Lion’s Club, Rotary
Club and other social-service organisations.
In the medical exhibitions that are conducted in colleges, leprosy should
find a prominent place and such opportunities should be fully made use of in
educating the public.
During the routine medical check-up in schools, factories and other work
places, it should be made an invariable practice to look for leprosy. This again
helps in early detection of cases.
Doctors in general practice should become aware of the magnitude of the
problem and they should be acquainted with the common signs and symptoms
of the disease and also its treatment. They are the ones to see the patient firstand
they also have a good contact with the rest of the family. In fact some of the
leprosy patients might prefer taking treatment from.their own family physician,
to going to a leprosy hospital, where everybody comes to know that he has
leprosy. Refresher Courses should be arranged at regular intervals to keep the
doctors in general practice up-to-date: for examplc-on Multidrug Therapy
which has recently been introduced on a mass scale. These doctors could play a
big role in the control of leprosy, since they are better placed to retain the patient
for treatment (case holding).
The same principles apply to doctors working in smaller hospitals at the
district, taluk and primary health centre level.
When leprosy patients suffer from other a.ilments, doctors should not hesi
tate to admit them into general wards along with other patients, remembering to
treat them with equal respect. The nursesand other paramedical staffshould be
educated first so that they will not show discriminaion against the leprosy suffer
ers because any such discrimination might turn them into anti-social elements.
In addition to survey and education, doctors have an important role to play
in the treatment of the patients-treatment which attends to his physical,mental
and social needs and not just doling out tablets. Ina chronic disease like leprosy.
16
it is very difficult to retain patients for long on treatment. However, once the
patient develops trust and confidence in the doctor, he will continue treafment
for as long as necessary.
Patients should also be educated on the proper care of hands and feet so that
much disability can be prevented. At the village level all health personnel, inspite
of the fact that people specially trained in leprosy are available, should be trained
in how to recognize early leprosy. Cases for confirmation of diagnosis and treat
ment can be referred to bigger centres.This will increase the case detection rate.
About 25 percent of the patients have deformities. These should not have
occurred but those that occur should be corrected, to improve function as well as
appearance. However, the few existing centres will not be able to deal with such a
big load of cases and it is not economical to start new centres for reconstructive
surgery. This problem can be solved if the medical colleges could incorporate
reconstructive surgery in their orthopaedic or plastic surgery units. Young
doctors can also be trained in surgery so that they in turn develop their own team
and also train others.
Laboratory facilities for skin smear examinations should be provided and
smear examination must be made part of general laboratory-technicians’training. Or if necessary, laboratory technicians could be sent to leprosy centres for
training in smear examination.
Leprosy should find its rightful place in the curriculum for nurses. They
should be able to recognise the various signs of leprosy and its complications
and report to the doctor where necessary for prompt treatment. Visits to leprosy
centres should be arranged for orientation. In addition, they should also be
trained in the care of anaesthetic hands and feet.
Individual patient care helps directly in the control of leprosy. Rehabili
tation efforts start from the first exposure to diagnosis of leprosy. The diagnosis
itselfcauses a lot of psychological trauma and every patient must be talked to and
his questions answered and all attempts made to prevent his dehabilitation and
displacement from society. Which other profession is better suited in coun
selling the patient and his family than the doctor and his team? It is time for the
medical profession, which has isolated itself from the disease to come forward to
shed some light on those who have been in isolation because of the disease.
Though the medical profession is not trained in the various rehabilitation me
thods. they can guide the person and the rehabilitation experts from the medical
point of view.
17
,
Workshops and seminars on leprosy conducted by the leprosy centres to
which doctors from the teaching institutions are invited to take part, will not only
increase the awareness among the medical profession of the problem of leprosy,
but might also generate more interest in particular aspects of the disease. It is
heartening to note that teaching and training sessions are included for young
doctors at the XII International Leprosy Congress to be held in Delhi in
February 1984.
Thus, the health profession has a very important role to play in detection of
cases of leprosy, dissemination of health information to public and treatment
and rehabilitation of the individual patient—all of which work towards the con
trol of leprosy.
COMMUNITY HEALTH CELL
326, V Main. I Block
Korambngala
Bangalore-560034
India
Dr R H Thangaraj is the Director of the Leprosy Mission for Southern Asia.
18
EFFECTS OF EDUCATION
M S Nilakanta Rao
Leprosy has been a disease of man, probably for more centuries than re
corded history. Nobody knows the region of its origin and the methods by
which it spread all over the world.
Leprosy is known to have existed in almost all known parts of the world
even 2000 years ago. One computation indicates that there were 200,000 pati
ents in India at that time. In the 15 th and 16th centuries a large number of people
in European countries were afflicted by leprosy.
L. /
Evolution of Misconceptions:
People had their own conceptions based on what they had heard before
and what they observed. They considered their observations as facts Their re
actions were moulded by what they had known. Such impressionsand reactions
were passed on from one generation to the next, with some additions at each
stage.
1
i
These notions may be summed up:
Leprosy was something terrible. Hence those who had the disease were
"lepers”.
Leprosy was “unclean”, whatever that might have meant.
Leprosy was a disease which spread from such “unclean” persons to other
members of the society who were probably considered as clean. Therefore the
"lepers” had to be isolated and kept faraway from the society. In case they would
come to the areas of normal society they should announce theirarrival by some
means.
The concept of isolation extended to such an extent that contracting leprosy
meantsocial death. For all practical purposes a “leper” was no more alive so far
as the rest of the society was concerned.
This thought extended further and caused the immediate relatives to per
19
;
/
j
form their last rites ahead of their death! In some countries the “leper” was ex
pelled to jungles. In some others he would be buried alive.
These concepts led to some interesting proceduresin some places.To give
one example: once a year, the village chief and his associates would sit in a parti
cular place, and all the villagers had to parade in front of them. The village leader?
would pick out the“lepers”; and order either exile or burial.
In the minds of all the people leprosy meant gross deformity, that is com
plete disfigurement of the face and loss of limbs. People generally believe that
man was made in the image of God. In other words, striking and chiselled
features which rendered a human b'cing attractive was considered closer to God.
A “leper” with total disfigurement of face and mutilated limbs was therefore far
removed from God. So he must have been positively a sinner. And his disease
was the result of sins.
Leprosy was found in children of leprosy parents; or an adult “leper” had
leprosy parents. Therefore leprosy was considered hereditary.
These and similar misconceptions were rampant and had taken deep root in
the human psyche. Eveh now large sections of the people, all over the world
harbour such ideas. On account ofsuch misapprehansion and the absence ofan
effective drug in any system of medicine, the only methods of approch towards
the sufferers were either to be compassionate or to be hateful. Those who were
compassionate were few. The discovery of lepra bacillus in 1873 and of DDS as
an effective drug (in 1947) were momentous. This triggered the process of de
velopment of a positive and rational attitude towards the disease. Since 1947
considerable amount of new knowledge on various aspects of leprosy has
accumulated. This includes discovery of very effective drugs, physiotherapeutic
measures, surgical procedures to improve appearances as well as functions, and
better understanding of rehabilitation procedures. But it was realised long ago
that it is far easier to treat and cure a patient than to change the opinions and
beliefs of people. If a leprosy patient has to accept the diagnosis and take treat
ment regularly without concealing his disease,he has to be greatly supported by
the society.
Evolution of Health Education
Ernest Muir was probably the first to suggest that the society should be in
formed the true facts about leprosy. That was in 1926. He suggested that the best
way to control leprosy is by the PTS method-Propaganda,Treatment and Sur20
vey. The WHO recommended in 1960 that Health Education should be taken up
“to awaken the mind to think correctly”. The objectives of health education
should be:
“to convince patients and the public of the curability of the disease in the
early stages, especially before deformities have developed; and
“to demonstrate to the community that it will not suffer if it assumes a more
liberal attitude to leprosy patients and that their reabsorption into the
community, even if they have deformities, is necessary on the ground of
common humanity and in the interest of the more effective prosecution of the
campaign”.
Based on its experience, the Gandhi Memorial Leprosy Foundation
(GMLF) recommended the Survey, Education and Treatment (SET) pro
gramme to theGovemment of India in 1954-55.The National Leprosy Control
Programme (NLCP) of India was launched in 1955 using the SET method.
Under this programme, health education was to be an important component.
But it did not get the necessary attention because the stress was on survey for the
purpose of case detection and treatment. As a consequence the social acceptance
of leprosy patients has not made much head way. Similarly the misconceptions of
the community continue to remain as before.
The Gandhi Memorial Leprosy Foudation
GMLF began to give greater attention to health education from 1962 on
wards. As they experimented finding out the correct words for the messages to
be conveyed, the different methods of communication suited to different types
of audiences, the tools of communication such as spoken word, written word
(leaflets, books, etc), visuals (flash cards, photographs, films), they realised that
even when the community was prepared, the need for the patients to know the
places of treatment was important; and there should be someone to treat
Therefore they organised a series of refresher courses for General Medical^
practitioners by suitable trained personnel (non-medical men to organise and
medical men to deliver the lectures). In the period 1969-78,3,189 medical men
were given orientation in 105 batches. The organisation ofsuch courses was very
difficult and required considerable effort to be put in. The response from the
trained medical men was rather disappointing, in the sense that the majority of
them were not interested to enlarge their knowledge or absorb new ideas. Thus
21
there was no appreciable change in their attitude or practice.
As a result, GMLF decided that the next best step would be to give ori
entation to the teacher trainees. In the period 1968 to 1978, more than 160.000
teacher trainees were given orientation. The advantages of giving such ori
entation, was:
The school teacher always happens to be a local leader; hence he will be
influencing the others in the society.
The teacher will be putting new ideas into the minds of the young who are
being exposed to all aspects of the world for the first time. In other words, their
minds are like clean slates. Therefore, to ‘write’ the new knowledge on their
fresh minds is easier than on those of adults. Also the child’s acceptance of the
new knowledge is more total than in the case of an adult.
The teacher will be able to recognise suspicious spots amongst the children
and others; and guide them for seeking medical help.
Because of his knowledge, he would protect the interests of child-patients
under his care; and not allow victimisation.
The teacher is not actively concerned in the treatment of the patient.
Therefore h'is reactions towards a patient are likely to be positive and less in
hibited.
Other methods involving students and teachers
As the teacher training programme continues, it was realised that the tea
cher would be helped to talk about leprosy if there was a lesson on the subject in
the tertbook Therefore GMLF made efforts for insertion of such lessons in the
books for the seventh and tenth standards. Some states like Maharashtra and
Karnataka accepted this suggestion and introduced the lessons.
The survey part of SET programme includes school survey. To prepare a
school for survey, the head of the institution has to be given relevant infor
mation, before his help and permission can be had. He, in turn, takes the assis
tance of other teachers to get all the students examined by the health staff. This
process tickles the curiosity ofthe students. Therefore it would be worthwhile to
deliver lectures to the students on the subject, at the same time.
Students (primary or collegiate) are very responsive. After such a lecture
many of them contact a doctor (or even the lecturer himself) to find out whether
the patches they have, are due to leprosy.
Essay competitions on leprosy arranged for students always elicit a good
response, especially if the prizes are attractive. Those who would like to parti
cipate in such essay competitions will be very receptive to a lecture on the
subject. In addition many of the youngsters take the initiative to gather more
information from all other available sources. Therefore, the organisers of such
conjpetitions should provide such sources in an unobtrustive way.
Occasional)' one comes across school children approaching the public for
donations, to a cause such as rehabilitation. They would have been directed by
their teachers in the matter. Many of these students ask questions about the
subject such as curability and rehabilitation. They become interested and read
articles in newspapers, hear lectures and give attention to visuals, especially if
their interest is maintained.
Health Education by other Agencies
All tne agencies working in the field of leprosy have recognised the great
importance of imparting knowledge to the student generation. Hence many of
them arrange educative lectures in schools and colleges for students and
teachers, as often as possible. But these programmes are not continuous and
sustained. Isolated, disjounted and fragmented communication and educative
activities will not yield longlasting results.
The mass media supplement the knowledge gained in schools and colleges.
But the time and space they give for leprosy is totally inadequate to tackle this
serious health problem.
All the same it may be said that the general level of understanding about
leprosy has gone up considerably. This has helped to reduce the sufferings of
patients and obtain more willing cooperation for treatment.
Conclusion
]f children have correct understanding about leprosy, the stigma will melt
away in the measurable future. If they get the disease, they will take treatment.
1 f others get the disease, they will encourage them to take treatment from the first
day and to get cured without deformity.
23
Intensive health education beamed towards today’s children will make the
difference to tomorrow’s leprosy control work.
Di M S Nilakanta Rao, President of the National Leprosy Organization (India) is a VVllOConsultant on l.eprosy to Government of India.
24
VOLUNTARY WORK
S P Tare
Leprosy is one of those disease which attacks onlv the human snecies. It has
however evaded medical solution for centuries and till a few decades ago was
incurable. Because of the absence of effective medicine and the great physical
damage visibly associated with the disease, leprosy has been, at all times and in
all places, abhorred and patients of leprosy hounded. There was very scanty
medical knowledge about this disease due to which the medical profession re
mained apathetic. Till about a century ago, there was no organised anti-leprosy
work to protect and give relief to those suffering from this disease.
The Christian missionaries in India, however came forward about 120 years
ago to serve the patients of leprosy. Two Indian institutions are reported to have
been working at Varanasi and Agra in the earlier part of the 19th century. These
institutions tried their best to give asylum to leprosy patients and provide them
some medicine and keep them engaged in agriculture and cottage industries.
One non-missionary voluntary institution started near Wardha in 1936
under the inspiration of Mahatma Gandhi. It was however only after the coming
of Independence, that many more voluntary agencies came forward for leprosy
work. Another important factor which paved the way for accelerated work was
availability of DDS as a curative drug for treatment of leprosy. Today, the num
ber of voluntary agencies in this field in India exceeds 300, but of these over 150
are actively engaged in anti-leprosy work.
The place and role of voluntary effort is appreciated in all fields of develop
mental activity. So it is in leprosy. Almost all leprosy work in the country was in
the hands of voluntary workers before 1947. They, by their very constitution and
motivation , are best suited to take up innovative and exploratory work which is
so necessary in leprosy field. There are many lacunae in the medical knowledge
of leprosy. The social stigma about leprosy is deep-rooted. And the drugs ava
ilable have their limitations. Hence even though the Government has taken up
leprosy control work on an extensive scale in all known endemic areas in the
country, the need for the participation and pioneering contribution of voluntary
agencies remains.
Voluntary agencies have the advantage of a band of committed and moti25
vated workers. They usually cover a small and compact area. They have the
facility of constant and close supervision with the freedom to quickly tackle
instances of dishonesty and shirking of work. Their management has the ne
cessary flexibility to alter, correct and modify their approach or method or work.
They can quickly undertake studies and researches in areas wherever these are
called for.
Considering the above advantages available to the voluntary sector, it can
play a valuable qualitative role to strengthen and support the wider quantitative
coverage by the government. In other words, the voluntary agencies should
guide, complement and supplement the public health system. Their contribution
can be specifically in four areas; demonstrational,exploratory, supplementary
and ameliorative.
Demonstrational Role
Voluntary leprosy institutions can conduct model leprosy centres of various
types (Leprosy Control Units, SET Centres, Urban Leprosy Centres, Referral
Hospitals), wherever utility of such a centre is established, and necessary
modifications to the plan and methods are made depending on prevailing
circumstances. Centres of these types will'also be run by the government in more
numbers and hence those run by voluntary institutions can serve as models for
the government workers and can also experiment with changes in methods and
approaches. It has been noticed (hat the presence of a good voluntary agency in a
district and the services available there for leprosy patients has a beneficial
indirect effect on the quality of work of nearby governmental centres.
In order to help voluntary leprosy institutions to fulfil their role as models
the government could:
encourage voluntary institutions to establish any type of leprosy work if
they have necessary trained personnel. For this , the government should be
prepared even to vacate in favour of a private institution.
give freedom to these voluntary institutions for making changes in the
methods of work, provided they adhere to the broader objectives laid down by
the government.
Exploratory Work
The second field of activity which can be left largely to the initiative of
26
private leprosy institutions is exploratory work. This includes taking up pilot
studies or projects to find answers to various facets of leprosy problems. Such
studies are essential for the success of the leprosy control programme. For
example though our aim is to control leprosy, we have not yet been able to
achieve it in any area in the country. There are some good institutions who have
given ample demonstration that the intensity and complexity of the leprosy
problem can be considerably reduced With control programme but there arc
numerous factors which hamper and hinder achievement of total control of
disease. These and other-epidemiological problems need to be studied in the
field.Voluntary institutions can devote themselves to this,rather thanduplicating
the government patterns of leprosy work carrying with it the attraction ofgovernment grant. It is urgent to find solutions to handicaps and constraints noticed in
some control centres, as these would eventully be noticed in the governmental
work also, thereby retarding the fulfilment of objectives of the national
programme.
Supplementary effort
There are some fields of activity which can be engaged in both by the
government and voluntary institutions but where the government has limi
tations in effective functioning, these activities can be simultaneously entrusted
to voluntary leprosy institutions, wherever they exist, as supplementary to the
government effforts.
Training Centres:
This is an activity whose importance for the success of the National Leprosy
Control Programme has unfortunately not been given due attention. In train
ing of any type,what is important to be imparted to the trainee is not merely
knowledge of the subject but also the moral intellectual commitment to the
cause. The national leprosy programme is today suffering due to the halfhearted
and often inadequate training given in earlier decades to the field workers. This is
evident in wrong and sloppy reporting, lack of health education and absence of
reliable data for evaluation. From this point of view the training imparted by a
few private institutions in the country is definitely superior and the government
should encourage involvement of voluntary institutions in the training of
personnel.
Referral Centres:
With a wide field network of leprosy centres manned mostly by
27
paramedical personnel and with increasing number of private practitioners
taking up diagnosis and treatment of leprosy, there is greater need for centres
where they can refer difficult, complicated or unresponding cases for advice in
diagnosis, treatment and care. There are some well developed private
institutions with competent and experienced medical staff which can be re
cognised as referral centres. These centres, one in two or three endemic districts,
can be useful to leprosy technicians of SET centres, medical officers of leprosy
control units and private practitioners treating leprosy patients.
Intensive Health Education Work
Even though health education is incorporated in the SET pattern of work
since the beginning, it has hardly been emphasised all these years. No learning
aids of any kind are available to most of the field workers nor were they told
about health education in their training. As a result, health education which is
essential for bringing new cases out and in holding old cases for treatment till
their cure, has been and is being almost totally neglected.
Voluntary leprosy institutions can be help'ful in organising short term
training in health education techniques to government paramedical workers.
These agencies can also be entrusted with the responsibility of doing health
education work hot merely in their own area ofwork but also in the surrounding
area or part of the district which is covered by the government.
Participation of Medical Practitioner and other Social Bodies
It is accepted that active participation of all medical practitioners is abso
lutely necessary for the success of leprosy control and for removal ofstigma from
the society. As long as people see that doctors do not treat a patient of leprosy
with the same care and courtesy as they treat patients of tuberculosis or other
infectious disease, they are not going to believe that leprosy is a disease like any
other. Those voluntary institutions who have experienced medical personnel
with ability to influence medical groups can take up this activity in their own
areas.
The Ameliorative Aspect
Leprosy is a medical problem but with very serious social repercussions
due to the chronic nature of the disease and the centuries-old stigma prevalent in
all societies. The National Leprosy Control Programme has restricted itself pri28
manly to the medical and public health side of it. It cannot, however, be denied
that the patient has not only the problem of having the disease but also the more
serious problem of social boycott. The biggest of the social problems is that of
rehabilitation of leprosy patients. The other allied problem is that of those who
take to begging. There is also the married women patients who have been
divorced or disowned by the husbands. These and other social problems are the
inevitable aftermath of the disease. We cannot shut our eyes to the immense
unjust suffering of hundreds of thousands of leprosy patients, whether they are
abandoned, crippled, beggars or other dehabilitated groups. In the govern
mental centres the workers are not expected to help such persons nor do they
have the time or inclination to do so It is the voluntary leprosy institutions
which can help such leprosy patients in preventing their social dehabilitation, in
providing protection; in helping them stay in job, family and community; in
organising training in skills and crafts; in helping trained persons to stand on
their own; in running sheltered workshops for those who are unable to get a job
in society; in helping married woman patients to stay with their husbands. This
type of help can be given not’only to leprosy patients of the area served by these
institutions but also extended to leprosy patients in nearby areas covered by
governmental centres.
In summary, voluntary institutions have a major role to play in the National
Leprosy Eradication Programme in areas which are vital for its success and
where the government has diffifulties and limitaions. The role as elaborated
above will not only be helpful to the people but also welcome to the government
because that will not only strengthen the national programme but also ensure
wider and deeper participation of community in fulfilment of the national pledge
to eradicate leprosy provided we understand it not as “zero-leprosy but as lep
rosy being reduced to the status of a common disease curable by two to three
years treatment-arid not a curse for life”.
Mr S P Tare is the Director of the Gandhi Memorial Leprosy Foundation. Wardha. Maharashtra.
29
V )y
LEPROSY AND THE LAW
S P Tare
The law is expected to protect the rights of the people and help them to
enjoy the benefits of their rights without interference. It is also supposed to be an
expression of the existing social norms and public opinion.
If one reviews the laws relating to leprosy and leprosy patients and also
various legal enactments concerning leprosy patients, it is evident that they are
fulfilling theabove two functions. They do reflect the fearand prejudices existing
in the society about leprosy, and their objective, obviously, is to protect the
society from infection of leprosy.
There are a number of laws and legal enactments which put numerous
restrictions on the movement of a leprosy patient and severe legal impediments
in his social mobility. For all practical purpose, a patient of leprosy, in the eyes of
the law, is little short of a criminal who, at the slightest opportunity, should be
hauled and put behind bars so that he does not pollute the social atmosphere.
The oldest enactment relating to leprosy is the Indian Lepers Act of 1898.
This Act was first enacted in Bengal and was later made applicable to the whole
of India. It is a federal law applicable to states, only if the State Governments
agree to its application to the state territory. Most of the State Governments in
earlier years have opted for its applicability to their states.
The Act was passed in 1898, and one can well imagine the ignorance
prevalent then, not only among the public but also among the legislators who
passed the Act. The Act makes no distinction between infectious and noninfcctious types of leprosy and presumes a leprosy patient to be a patient for life.
It has also used the words'leper' and 'pauper' as synonymous, as if every patient
of leprosy is necessarily a pauper. (The word 'pauper' was however deleted by
the Maharashtra Government in 1955 by Act No. XXVIII). Section 9 of the Act
prohibits leprosy patients from “preparing or sale of food or drinks or clothes,
taking water from public wells, driving or travelling through public conveyance
and any such other transactions which will affect public health". It imposes fine
in cash and imprisonment for infringing any of its provisions. Section 11 holds
the employer responsible for giving jobs to leprosy patients and provides for
punishment to such employers. The Act provides for setting up segregation
30
camps for those patients who are found to be in notified areas against prohibitory
orders.
Another Act which puts restrictions on the mobility of leprosy patients is
the Indian Railways Act of 1890. Sections 47 and 91 of this Act prohibits patients
of leprosy from railway travel.
There are four laws concerning marriages which recognise leprosy as a
sufficient legal ground for divorce. The Indian Christians Marriage Act of 1872,
Muslim Marriage Act of 1934, Special Marriage Act of 1954 and the Hindu
Marriage Act 1955 have permitted a married person to apply for divorce if his or
her spouse is suffering from “virulent” or “virulent and incurable leprosy”. The
period for which the spouse is suffering from leprosy, however, differs under
different laws-under the Indain Christian Marriage Act, it is not less than three
years 'Section 13(i) (iv)| under Muslim Marriage Act, it is two years ISection 2
(iv)| and under the Hindu Marriage Act, it is three years (Section 13).
v
There are a number of “prevention of beggars” laws under which there is a
separate provision for leprosy patients. In Maharashtra, in cities like Bombay,
Poona, and Nagpur, leprosy patients found begging are immediately arrested
and sent to Beggar Homes run by the government
Besides the above laws applicable to the entire country, there are many
other State laws which put a variety of restrictions oh leprosy patients. Some
State laws have prohibited leprosy patients from inheriting property from a share
in ajoint family; others have debarred awoman patient fromclaiming alimony
after divorce. Some laws have taken away the rights of tenancy from patients of
leprosy. The Motor Vehicles Act in some States do not issue driving licences to a
leprosy patient In States like Karnataka, a patient of leprosy is not allowed to
stand for elections.
Leprosy patients are not insured by the Life Insurance Corporation of
India, and there used to be additional premium to be paid by leprosy workers.
Through the efforts of National Leprosy Organisation, India, Life Insurance
Corporation has stopped charging extra premium on life insurance of leprosy
workers in the field. Leprosy patients are not recruited in the Defence Services
either
Jy
These laws and legal provisions have been extremely harsh on leprosy
patients through the years. It has been particularly hard on women leprosy
patients who are married. In our male dominated society, the wife is expected to
31
C
,7/l.Ti.
I Y
•- ;
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j
, •••
,
live faithfully with the husband in spite of all his faults and misdeeds, and hence
there are too few instances of wives applying for divorce against their patient
husbands. But woman-patients have been and are, even now, quickly divorced
by their husbands on the ground of leprosy. The provisions about inheritance,
tenancy, and ineligibility for election have also been too often taken advantage of
by relatives and interested parties. In the course of leprosy work, we come across
cases where healthy people are certified as patients of leprosy at the instance of
interested relatives or opponents and debarred from property rights or from
standing for election.
if
Besides the inhuman suffering that leprosy patients have undergone due to
these unjust laws, they have also had an unfortunate effect on public opinion,
strengthen the fear and prejudices existing in the community. The laws, instead
of reflecting scientific knowledge and moulding public opinion, have played a
discouraging role as far as leprosy is concerned. The courts of the land, have, by
and large, also been satisfied in dispensing blind justice by following the letter
of the law, without exercising the right of giving a liberal interpretation to the
spirit behind the law. Thus, there have been legal tangles on the meaning and
interpretation of the words ‘virulent’ and ‘incurable’ despite expert medical
witnesses.
Leprosy workers all over the country have waged a relentless struggle, for
over two decades, against these unjust laws. This has had some effect The
Indian Leper Act 1898 has been repealed in the State of Maharashtra from 2
October 1983 and the Government of India has also repealed its application to
Union Territories from January 1984. The Railway Board is now not only
allowing railway travel by leprosy patients but also giving them concessions for
travel by railway from their residence to the place of their treatment. An effort to
get a law passed by the Parliament in 1969 providing for compulsory sterilisation
of leprosy patients was defeated in the Lok Sabha as a result of the campaign
made by some leading leprosy workers. The High Court of Tamil Nadu has
passed strong strictures against the decision given by a lower court where the
statement of a witness was not recorded on the grounds that he was a patient of
V leprosy. The High Court issued a circular (No. 251/1976, dated 9.12.1976) to all
lower courts that patients appearing in courts as parties or witness should be
treated with compassion and respect. Some courts in Maharashtra have acce
pted the expert medical advice in divorce cases where the wife-patient is taking
regular treatment and is not in a position to spread infection, and have rejected
the petition for divorce.
The Study Group appointed by the Government of India, in 1981, to draw
32
up a Strategy Plan for the Eradication of Leprosy has made the following
unambiguous recommendation:
“All such outmoded and derogatory Acts or prohibition in Acts adversely
affecting the fundamental rights of a leprosy patient as a citizen of India, should
be repealed or amended where needed, without any delay. It must be ensured
that in any subsequent legislation, this point is not lost sight of. A patient of
leprosy should be treated on par with a patient suffering from other infectious
diseases. The Law Department at the Centre and in the State should be ins
tructed to identify all derogatory and dehumanising laws concerning leprosy
patients and take immediate steps to have them repealed or amended”.
Even now, some of the State Governments are not yet convinced about the
urgency of repealing the Indian Leprosy Act, though the Government of India
has advised all the State Governments to do so. Other States are considering the
modification and the amendment of the Act to tone down the obvious harsh
provisions. The assumption is that a law is necessary to control leprosy.
Intelligent sections of society and politicians and legislators often think of
the law as a solution to social evils and problems. This is erroneous. No law has
ever succeeded in totallyremoving social evils. There are laws against untouch
ability, dowry and child marriage, which remain in statute books and are seldom
enforced. A proper law is useful but what is decisive in leprosy is not a law, but
enlightened public opinion.
Mr S P Tare is the Director of the Gandhi Memorial Leprosy Foundation, Wardha. Maharashtra.
33
v
COMMUNICATION FOR CONTROL
R Ganapati
Dealing with a disease riddled with misconceptions, the programmes en
gaged in eradication of leprosy are still struggling to find out the best means to
communicate with the community. There is no other way to persuade them that
the only method available to break the chain of transmission of the disease is to
reach chemotherapy to all, or a large enough, number of patients living amongst
them. The success of the programme depends upon the conviction of the society
about the facts concerning leprosy as known to the scientific community and
techniques of modern methods of control.
Unlike diseases dealt with mostly by the “hospital approach”, those which
required “field application” like leprosy depend to a considerable extent for their
success upon certain “messages” about the disease effectively reaching the
community in general. In achieving this object, mass communication media are
of utmost importance and these should be sufficiently exploited to generate
faith, among the public as well as the patients, in modern techniques ofcontrol.
Such educational approaches reaching the people cannot be expected to succeed
if this process is not followed up with services found satisfactory from the point
of view of patients reporting voluntarily as a result of mass communication. If
effectively carried out, the mass communication effort coupled with convincing
follow-up action may therefore be expected to lead to peoples’ participation in
the programme instead of the treatment process being “thrust” on unwilling
patients.
Objects of Health Education
The broad objects of health education are two-fold:
___ To augment case detection efforts by promoting voluntary reporting of
symptomatic patients to leprosy clinics..
__ To dispel prevailing misconceptions about disease in the society and to
make leprosy sufferers accepted by the community.
By using mass media of communication the first object.namely promoting
voluntary reporting of cases,can very easily be achieved. But it is exceedingly
difficult to inculcate scientific facts about the disease and to change the outlook
34
of the society to accept leprosy patients like any others. It may not be enough if
knowledge about leprosy alone is imparted to the community. The attitude to
leprosy patients and the behaviour towards them also should change.
Available Media
Cinema and Radio
In India with a very low literacy rate, the most powerful media of health
education are easily the cinema and the radio. There are around 10,400 cinema
theatres in India and the total number of seats sold annually exceeds 3,000
million. Four to five new theatres are added every week. The cinema is believed
to have the “highest penetration” of 69.6 percent in the southern states of India.
The broadcasting system is believed to reach about 55.5 percent in urban areas.
It may be interesting to note how radio broadcasts have been used by a rural
leprosy control programme for treatment purposes. In this programme which is
operating in Miraj, the date of visit of leprosy teams to particular villages for
offering modem drugs is announced through the radio to help patients to
assemble and collect their medicines.
Television
With a vast television network covering more and more cities in India this
medium can easily be exploited to reach certain target groups for education in
the field of leprosy, but unfortunately no organised efforts are being made. The
authorities should note that charitable organisations cannot afford to bear the
commercial rates of telecasting.
Press
In India there are 15000 or more newspapers and periodicals. The per
centage of urban population exposed to the press is 52.8 percent. Besides pub
lication of articles and news items on leprosy, this medium has been used by us
for giving wide publicity to treatment centres and their timings.
Exhibitions
In our experience health exhibitions portraying -information about leprosy
have been most rewarding as far as case detection in the community is
concerned. As a result of exhibitions held especially in urban slums, the yield of
new cases reported voluntarily to slum clinics has considerably increased. Even
agencies not directly concerned with leprosy such as the Railways can be used as
a medium of health education to innumerable commuters, as exemplified du35
ring the recent campaign of Bombay Leprosy Project in collaboration with the
Western and Central Railways. Massive exhibitions put up in major railway
terminal stations drew large crowds and .posters were even displayed inside the
railway compartments. An even larger potential awaits in the postal system and
its countless users.
It has also been amply demonstrated by us that exhibitions put up in out
patient departments of general hospitals with large attendance have a special
significance, in that immediate diagnostic and treatment facilities within the
hospital premises can be offered to self-reported cases after being educated by
the exhibits
Community Approach through group talks
The simplest method of mass communication is by “word of mouth”.
Personal transfer of message through “group talks” using sample visual aids has
limitation in that it is time consuming reaching a smaller circle of target groups
and effectiveness depends upon the personality of the communicator. However,
this has a most significant impact on the audience and the results may be
dramatic. The feedback from the target groups can immediately be realised.
We were impressed by the effectiveness of “non-survery technique” as a
case detection device. This technique consisted of elaborate health education
procedure adopted in a large slum community of about 20,000 subjects. We
subjected the above community to 232 exposures of intensive group talks,
exhibiting photographs. These were augmented by projection of slides on 46
occasions and nine film shows. A careful record ofself-reported leprosy patients
was maintained. The next phase of the programme was to subject the slum
dwellers for intensive house to house survey by employing paramedical teams in
the conventional manner.
The total number of patients identified during the whole period of study
(i.e. two phases consisting of health education and mass survey) was 347 (33
smear positive cases). Out of this 184 (27 smear positive cases) were detected
during the phase when the non-survey technique was employed. And 163 (6
smear positive cases) were added on during whole population survey. The
figures within brackets indicate the epidemiologically significant infectious
cases. It can be seen that most of them were identified through health education,
and during the survey phase only six cases could be added to the total number.
The observations of this study indicate that in comparable
urban
36
situations, namely slums, it should be possible to identify 54 percent of the total
leprosy cases, and more significantly 82 percent of cases of true public health
significance namely smear positive patients by employing techniques of mass
communication and these techniques may replace survey programmes which
are costly, more time-consuming and taxing.
Conclusion
It is unfortunate that though the principle of mass communication through
community education has been included in the SET (Survey, Education and
Treatment) pattern of leprosy control work, the component of Education has
received the least priority in the actual implementation of programmes. It is
hoped that with the committment of the nation to eradicate leprosy by the year
ZOOOAD.the potential of the various media of communication in reaching this
goal will soon be exploited and fully realised
This may help in unearthing leprosy cases from the community at a low cost
in time and money. It may help more patients to be brought under treatment by
giving publicity to places where treatment is freely available. In course of time it
may also lead to the society to shed its traditional fear of the disease.
Dr R Ganapathy is the Director of the Bombay Leprosy Project. Bombay. Maharashtra.
37
Annex I
GANDHI ON LEPROSY
“Leprosy work is not merely medical relief; it is transforming the frustration
in life into the joy of dedication, personal ambition into selfless service. If you
can transform the life of a patient or change his values of life you can change the
village and the country”.-Mahatma Gandhi.
An abundance of words and images recalls the life of Mahatma Gandhi,
each one standing as a testament to his courage and humanity. Not the least
among them are the episodes that record his concern for people stricken by
leprosy. Of all the exaimples of service that he set for those who sought to follow
hi m, this was perhaps one o f the most difficult. It showed his country the way to a
National Leprosy Control Programme.
Gandhiji’s attitude to leprosy was reflected in many other chapters of his
life. Little things have lasting and life-long impact, while small things precede
great deeds. All his life, Gandhiji moved and mixed with leprosy patients
fearlessly and with complete freedom. He always gave a listening ear to a leprosy
patient, visited leprosy institutions, showered his blessings on different leprosy
meetings,conferences, organizations and on individuals. While in Sevagram,
Wardha, he allowed a leprosy patient named Parchure Shastri to stay in his
ashram and used to look after him with regular dressings and treatment and also
invited him to perform religious ceremonies like marriage as a priest.
Leprosy, then was a dreaded and incurable disease. Gandhiji had great
inner commitment for the cause of leprosy. The seeds of his concern for the
patients were sown thus, when he was only about thirteen.
“My profession progressed satisfactorily butthat was far from satisfying me.
The question of further simplifying my life and of doing some concrete act of
service to my fellowmen has been constantly agitating me, when a leper came to
any door I had not the heart to dismiss hirri with a meal, so I offered him shelter,
^dressed his wounds and began to look after him. But I could not shelter him
indefinitely. I could not afford. I ‘lacked the will’ to keep him always with me. So
I sent him to a Government Hospital for indentured labourers”.
But Gandhiji never gave up his conviction that it was wrong to turn them
into social outcasts. Gandhiji’s own insight into the disease had long since
dispelled conventional prejudice and fear of infection from his mind. He
included the leprosy victims among his chosen brothers. To the inmates of one
38
leprosy home he wrote,” I would like you not to fee! sorry over your disease. I am
sure that a diseased mind is worse than a diseased body”
Gandhiji was well aware of the fear and loathing the sight of leprosy evoked
in most people. He had nothing but high regard for anyone who tried to
ameliorate the sufferings ofleprosy patients. He also championed the right of
leprosy patient to equality and often campaigned for asserting that right.
“I must own that the missionaries have founded many leper asylums and
the like. 1 have founded none. But I stand unmoved. I am not competing with the
missionaries or anybody else in such matters. 1 am trying humbly to serve
humanity as God leads me. The founding ofleprosy asylums is only one of the
ways, and perhaps not the best, of serving humanity. But even such noble
service loses much of its nobility when conversion is the motive behind it. That * >
service is the noblest which is rendered for its own sake”.
Mahatma Gandhi's Constructive Programme did not include leprosy work
until 1945 when he revised its mandate. When he looked at the neglect ofleprosy
sufferers, he confessed,”! am tempted to call it heartless, which it certainly is in
terms of non-violence’: And he deliberately introduced leprosv work as a
component of the Constructive Programme.
By this time, several programmes for the reliefand rehabilitation ofleprosy
patients were under way in the country. More than once he was invited to open a
new hospital. His usual response was,”Get someone else to open it; opening a
hospital is not a big matter. But, I shall come to close it’: Prevention, he knew,
was the real challenge.
“There is another tvpe of medical relief which is a boon. It is given by those
who know the nature of the diseases, who will tell the patients why they have
their particular complaints and will also tell them how to avoid them. Such ser
vants (of the people) will rush to assist at any odd hour of the day or night. Suc|
cscriminating relief is an education in hygiene, teaching the people how tcT’'
observe cleanliness and to gain health”.
Very few know as to how much Mahatma Gandhi was interested in and
::om how many aspects he viewed the leprosy problem of this country.
Commending those who had devoted themselves to leprosy work, he said: "An
i-. anour to them-but what of us?”
:0
Annex II
40
Annex III
VOLUNTARY ORGANIZATIONS
ENGAGED IN LEPROSY CONTRO1
Andhra Pradesh
The Medical Superintendent
Philadelphia Leprosy Hospital
Salur
Vizianagaram Dist. .
Andhra Pradesh 532 591
The Secretary
Damien Leprosy Centre
Eluru
West Godavari Dist.
Andhra Pradesh
The Director
Sivananda Leprosy Rehab Centre
Kukutapalli
Hyderabad Dist.
Andhra Pradesh
Bihar
The Secretary
Santhal Paharia Seva Mandal
Baidyanath-Deoghar
Santhal Parganas Dist.
Bihar
The Secretary
Rajendra Seva Ashram
Anugrahnagar
Mairwa
Siwan Dist
Bihar
41
The Secretary
Brambe Leprosy Institute
Ranchi
Bihar
The Secretary
Kusht Seva Kendra
Kapasia
Tq. Nawadha
Gaya Dist.
Bihar
The Director
Damien Social Welfare Centre
Post Box No. 17
Dhanbad
Bihar 926 001
Gujarat
The Secretary
Baroach Dist - Leprosy Relief Assn.
C/o Civil Hospital
Baroach
O
Gujarat
The Secretary
Baroda District Anti-Leprosy Assn.
Baroda
Gujarat
Karnataka
The Superintendent
St. Joseph’s Leprosy
Hospital
Kankanady
Mangalore
S. Kanara Dist.
Karnataka
Dr. V.P. Macaden
Swiss Emmaus Association
Laxmi Nagar
Hubli Road
Dharwar
Karnataka
Kerala
The Superintendent
St. John’s Hospital
Pirappuncode
Trivandrum Dist.
Kerala 695 607
The Superintendent
Poor Leprosy Hospital
Shertallay
Alleppey Dist.
Kerala
The Director
Gandhi Memorial
Leprosy Foundation
P.O. Hindinagar
Wardha 442 103
Maharashtra
The Secretary
Maharogi Seva Samiti
Warora
Maharashtra
The President
Vidarbha Maharogi Seva Mandal
Tapovan
Amravati
Maharashtra
The Hon. Secretary
Poona District Leprosy Committee
Red Cross Blood Bank Building
593/2 Rasta Peth
Poona 411 011
Maharashtra
Maharashtra
The Secretary
Maharogi Seva Samiti
Dattapur
Wardha
Maharashtra
The Superintendent
Acworth Leprosy Hospital
Wadala
Bombay 400 031
Maharashtra
42
The Superintendent
Richardson Leprosy Hospital
Mi raj
Sangli Dist
Maharashtra 416 410
Madhya Pradesh
The Director
Pavitara Atma Ashram
P.O. Auliya
Khandwa Dist
Madhya Pradesh
The Director
S.L.R.T. Centre
Karigiri
Via Katpadi
North Arcot Dist
Tamil Nadu 632 106
The Director
Workshop for Rehabilitation &
Training of the Handicapped
Katpadi Extension
Vellore
North Arcot Dist.
Tamil Nadu 632 006
iJJ
Orissa
The Secretary
Leprosy Relief Committee
Parlakimedi
Ganjam Dist
Orissa
Tamil Nadu
The Medical Officer Incharge
Hamerijckx Leprosy Centre
P.O. Polambakkam
Madurataka Tq.
Chingleput
Tamil Nadu
The Director
ILEP Leprosy Control Project
Post Box No. 3
Dharmapuri
Tamil Nadu
43
The Secretary
German Leprosy Relief Association
4, Gajapathy Naidu Street
Shenoynagar
Madras 600 030
Tamil Nadu
The Chief Medical Officer
Salvation Army
Catherine Booth Hospital
Nagercoil
Kanyakumari
Tamil Nadu
e
The Superintendent
Rawtakuppam’Hemmerijckx Rural
Auroville P.O. Centre
Tai. Tindivanam
South Arcot Dist.
Tamil Nadu
The Medical Officer
Sagaya Matha Hospital
Pullambadi
Trichy Dist.
Tamil Nadu
The Superintendent
Sacred Heart Leprosy Hospital
Sakkottai P.O.
Kumbakonam
Thanjavur Dist.
Tamil Nadu
The Hon. Secretary
The Wallajah Taluk Leprosy
Relief & Control Scheme
Scudder Memorial Hospital
Ranipeth
North Arcot Dist.
Tamil Nadu
The Secretary
Kasturba Kusht Nivaran Nilayam
1, Malavanthangal
South Arcot Dist.
Via Kandachipuram
'Tamil Nadu
The Superintendent
Holy Family Hansenorium
Fatima Nagar
Trichy Dist.
Tamil Nadu
The Superintendent
Dayapuram Leprosy Centre
Manamadurai
Ramnad Dist.
Tamil Nadu 623 606
Uttar Pradesh
The Superintendent
Kushta Seva Ashram
(Leprosy Hospital)
Gorakhpur
Uttar Pradesh
The Hon. Secretary
Kanshi Kushta Seva Sangh
P.O. Sarnath
Varanasi
Uttar Pradesh
Mr. Singh
Adm. Officer
SBD Leprosy Hospital
100 Gandhigram
Krishna Nagar
G.T. Road
Kanpur
Uttar Pradesh
The Secretary
Kusht Seva Ashram
Seorahi
Deoria
Uttar-Pradesh
44
Miss J.R. Tipping
Health Education Centre
Naini Leprosy Hospital
P.O. Naini
Allahabad Dist
Uttar Pradesh 211 008
Union Territory of Delhi
The Director for Southern Asia
The Leprosy Mission
4th Floor, Sheetla House
73-74 Nehru Place
New Delhi 110 019
West Bengal
The Superintendent
Bankura Leprosy Control Program
P.O. Box 27
Bankura
West Bengal 722 101
Dr. Margaret Owen
Health Education Training Centre
Purulia Leprosy Hospital
Purulia
West Bengal 723 101
45
The Secretary
Hind Kusht Nivaran Sangh
1, Red Cross Road
New Delhi 110 001
SPREAD THE WORD
Leprosy is like any other disease. And it is the least infectious.
Leprosy is caused by germs. It is neither hereditary nor a curse of the gods.
Eighty percent of leprosy cases in India are non-infectious.
A pale or red patch on the skin may be leprosy. Do consult a doctor.
Leprosy is completely curable with regular treatment.
Early detection and regular treatment prevent deformities and disabilities.
Help to overcome fear. Encourage early detection and sustained treatment.
Leprosy patients can continue to live at home and do normal work, while
under regular treatment.
Do not isolate leprosy patients. Accept them in the family and the
community.
Position: 2238 (4 views)