RAISING HEALTH STATUS OF INDIA
Item
- Title
- RAISING HEALTH STATUS OF INDIA
- extracted text
-
In this Issue
Page
swasth hind
January 1988
Agrahayana-Pausa
Vol. XXXII, No. 12
Saka 1909
Mahatma Gandhi’s Martyrdom Day—30th January—
is also observed as the Anti-Leprosy Day throughout
the country. Gandhi's “life was a message*’ and a testa
ment to his courage and humanity. Not the least among
them are the episodes that record his concern for people
stricken by leprosy. It showed his Country the way to a
National Leprosy Control Programme. We devote this
special number of Swasth Hind to leprosy eradication.
Our cover shows that leprosy patients can be gainfully
employed after treatment.
SWASTH
HIND
Gandhi on Leprosy
1
Raising health status of India
—Role of Pandit Nehru
—Dr Subhash C. Kashyap
3
India’s National Leprosy Eradication
Programme — current status
— Dr B.N. Mittal & Dr N.S. Dharmshaktu
6
Rehabilitation of Leprosy Patients
—Ajit Bhowmick
10
Social Problems of Leprosy
— A Doctor’s Experience
— Dr Kunal Saha & Dr iV.Af. Chawla
15
Operation health care at drought
relief sites
16—17
Vitiligo — phulbehri
— Dr Sardari Lal
20
Leprosy: Some Pacts you should know
21
What are the misconceptions/Prejudices
and correct facts about leprosy
25
Welfare of Leprosy Patients of Delhi
26
Making Leprosy Patients Socially useful
— G. Govindan Nair
WISHES
ITS READERS
A HAPPY NEW YEAR
27
*
Ten years without smallpox
— Zdenek Jezek
30
Editorial and Business Offices
SUBSCRIPTION RATES
Single Copy .
.
50 Paise
Annual
.
Rs. 6.00
Articles on health topics are invited for publication in this
Journal.
(Postage Free)
EDITOR
Central Health Education Bureau
(Directorate General of Health Services)
Kotla Marg, New Delhi-110 002
N. G. Srivastava
State Health Directorates are requested to send in reports of
their activities for publication.
The contents of this Journal are freely reproducible.
acknowledgement is requested.
Sr. SUB-EDITOR
M. L. Mehta
COVER DESIGN
B. S. Nagi
Due
The opinions expressed by the contributors are not neces
sarily those of the Government of India.
SWASTH HIND reserves the right to edit the articles sent
for publication.
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 self
less 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 examples of service that he set for
those who sought to follow him, this was perhaps one of 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. Gandhji had
great inner commitment for the cause of leprosy. The seeds of his con
cern for the patients were sown thus, when he was only about thirteen.
“My profession progressed satisfactorily but that was far from
satisfying me. The question of further simplifying my life and of doing
January, 1988
of the country. In his scheme of
things, promotion of health was
basic to national progress.
Under Nehru's stewardship, the
successive Five Year Plans provided
the framework within which the
States could develop the infrastruc
ture of their health services, facili
ties for medical education, research,
etc. Besides, legislations were en
acted by Parliament to regulate the
standards of medical education,
prevention of food adulteration,
maintenance of standards in the
manufacture and sale of certified
drugs, etc. These efforts , resulted
in paving the way for vastly im
proved medical and health facilities
and services in the country. The
number of doctors, nurses and hos
pitals multiplied. The number of
medical colleges increased. In rural
areas, the Government established
thousands of primary health centres
whereas none existed before 1951.
Public health approach
health education
including
According to Pandit Nehru, the
pursuit of health or the raising of
the health standards of the nation
did not mean merely the curing of
disease, but much more than that the
'mention of it. Pandit Nehru
took effective measures to make
India a strong and healthy country
in the comity of nations. Thus,
while hospitals, dispensaries, etc.,
were necessary, what counted most
was the public health1 approach as
well as health education. There
fore, the Government initiated effec
tive steps to control malaria, tuber
culosis and cholera which used to
take a heavy toll of life. Smallpox.
a dreaded disease, was completely
eradicated.
Besides, the general
death rate came down from 27.4 per
4
thousand in 1951 to 11.7 per thou
sand at present. The life expectancy
at birth increased from 32 in 194151 to 54.71 in 1985-86. The infant
mortality rat© came down from 146
per thousand live births during the
fifties to 95 in 1985. The per capita
expenditure on health incurred by
the country also went up consider
ably.
War on disease and ill-health
Nehru was aware that the large
scale incidence of disease in India
was mainly due to low level of re
sistance caused by inadequate nutri
tion. He, therefore, felt that it was
indeed very important for the hea'th
of the individual as well as of the
community that such food habits
were encouraged and developed that
ensured balanced diet. Nehru was
conscious of the fact that poverty,
too, acted as an impediment in rais
ing the health' status of the country.
He always worked for the upliftment
of the common man and dedicated
himself to the service of India pledg
ing all possible efforts for ending
the evils of poverty, ignorance and
disease. In fact, he declared a war
on disease and ill-health and said.
“It is essentially a war on poverty
and all its evil brood.”
Food for health
The Indian diet was not adequate
either in quantity or in quality and
led to nutritional deficiency render
ing the people more prone to di
seases and hence economically less
productive. Therefore, in the First
Five Year Rian, Nehru favoured
greater accent on the production of
cereals so that an adequate intake of
food could be assured to the masses.
In the Second Five Year Plan, how
ever, emphasis was laid on the pro
duction of protective and nutritive
foods such as milk, eggs, fish, meat,
fruits and green vegetables. Subse
quent Plans also took care of the
nutritional needs of the people.
Panditji knew that the benefits of
modern science and
technology
could reach the people only if me
dical and health services were pro
perly planned and. effectively imple
mented. Nehru was sad about the
plight of medical and health ser
vices, particularly, in the country
side and commented:
“While our cities and towns required
to be looked after very much than
they arc at present, it is really
the
village that has been terribly neglected
and cries loudly
for succor.”
Nehru felt that villages required
special attention as about 80%
population of our country lived
there and they had little or no access
io modern medicine and health care.
Public health was, therefore, taken
to the villages, and the villagers
were not compelled to come to the
towns in search of medical and
health facilities. With a view to ful
fil this objective, Nehru started the
community development movement
which, among other things, played
a very important role in extending
public health services to the rural
areas.
National health
treatment
service
for free
In order to raise the health stan
dard of the country, Nehru’s objec
tive was a National Health Service
which would provide free medical
treatment and advice to all those
who required it. And he tirelessly
worked to achieve this aim through
the development plans. He believed
rSwasth Hind
in involving the State medical ser
vices much more intimately and
deeply to produce the desired results.
He was often distressed to find
that:
“In spite of good hospitals the poor
man docs
not always get the same
treatment as the rich man does. Many
of them hardly get any treatment at
all. and they cannot afford the very
ing the objective were (he education
of the messes in family planning,
research in the efficacy of different
methods of birth control, and pro
vision of centres for rendering ad
vice to the people on the subject.
Thus, Nehru’s Government became
one of the few governments in the
world which had undertaken the
family planning programme in a
scientific way.
Addressing the First Asian Popu
lation
Conference in New Delhi on
and more in modern medicine. These
10 December, 1963, Pandit Nehru
people must get proper treatment;
emphasised the need of controlling
and they must get the drugs they
the rapid population growth in under
need.”
developed countries and said:
expensive drugs
that are used more
In order to make available essen
tial drugs to every person, rich or
poor, Nehru entrusted the manu
facturing of certain drugs to the
public sector enterprises.
“It
is not
providing
merely
a question of
food for a growing popu
lation, although that is primary con
sideration, but, generally, it is a ques
tion of providing the means for a good
life, a healthy life, for all the people
Concern for rapid population growth
who live
in the country. We have
thus to face a kind of race between the
From the very beginning, Jawahar
lal Nehru was deeply concerned
with the rapid rate of growth of po
pulation, particularly among the
poorer sections of the community.
In his opinion, it was imperative to
ensure that the rise of population
in future would not be so steep as
to nullify or neutralise the increase
in production that India was aiming
at. Thanks to Nehru’s farsighted
ness and efforts, a positive approach
was made to contain the rapid po
pulation growth from the First Five
Year Plan onwards. The policy,
as enunciated in the Plan, aimed
at a reduction in the rate of growth
of the population and considered
that family planning or spacing of
children was necessary and desirable
and would ensure better health to
the mothers and better care for the
children. The methods for attain
January, 1988
rate of economic growth and the rate
at which population grows.”
Alarming population
social problem
growth—a
Nehru termed the alarming popu
lation growth as a social problem
of great magnitude and said:
success, family planning had to go
had in hand with the general econo
mic and social development of the
country. India had to plan in terms
of food, clothing, housing, education,
health, etc.
Alliance between ancient and mo
dem systems of medicine
Nehru had great appreciation for
our ancient and indigenous systems
of medicine like Ayurvedic and
Yunani, which had a long history
and a great reputation in India. He
felt that this accumulation of past
knowledge and experience should
not be ignored. Instead, we should
profit by them and not consider them
as something outside the scope of
modern knowledge. According to
him, there was no reason why we
should not bring about an alliance
of old experience and knowledge,
as found in Ayurvedic and Yunani
systems, with the new knowledge
that has been provided by modern
science. It was, however, necessary
that our approach should be on the
basis of modern scientific methods
and persons who are Ayurvedic and
Yunani physicians,, should be im
parted a full knowledge of these
methods so that the benefits of both
the systems could reach the people
at large.
“Obviously, this cannot be left to take
its own course because that course would
Thus, Nehru regarded health as a
bring tremendous difficulties in its
trail. We have to tackle it with some fundamental necessity and the key
foresight
and with some efforts at to national development. He felt
planning-”
Nehru accorded priority to the
spread of education, particularly
among the girls, who, he felt, were
likely to' change the living habits of
the people and would probably
succeed in carrying the message of •
family planning farther than even
the official workers.- However, he
felt that in order to achieve all round
that only healthy citizens could
make a strong nation. He once
said:
“I want young people and odd to be
healthy
and strong and agile, and I
want
them to be physically an A-I
nation- I do not think we can really
make much intellectual progress unless
we have a good physical background.”
5
INDIA’S NATIONAL LEPROSY
ERADICATION PROGRAMME
—Current Status
Dr B. N. Mittal Dr N. S. Dharmshaktu
To meet the challenge of a major public health problem—leprosy—-in India, the National
Leprosy Control Programme has been in operation since 1955. The control programme has
been redesignated in 1983 as the National Leprosy Eradication Programme with the objective
of arresting the disease in all the known cases by the turn of the century.
eprosy is a major health as well
L
as social problem in India. Of the
estimated 12 million leprosy cases in
the world four million are contribu
ted by India. All the States and
Union Territories (UTs) report the
disease but the States of Tamil Nadu,
Andhra Pradesh, Orissa, West Ben
gal, Bihar. Maharashtra, Karnataka,
Meghalaya, Manipur, Sikkim, Tri
pura, Goa and U.Ts. of Pondi
cherry, Lakshadweep, Andaman &
Nicobar Islands are highly endemic
with a prevalence rate of five and
above cases for every
thousand
population. Twenty per cent of cases
in the country are infectious type
and 15—20 per cent cases have de
formities. Social prejudice and
superstition still continue to obstruct
the disease. The advent of more
effective chemotherapy . known as
multi-drug treatment promises to
bring about a favourable change
6
in reduction of morbidity and social
stigma.
Priority and Objective
The National Leprosy Control
Programme has been in operation
since 1955. It is only after 1980 it
has received high priority. The con
trol programme has been redesigna
ted in 1983 as the National Leprosy
Eradication Programme (NLEP)
with the objective of arresting dis
ease in all the known cases by the
turn of the century. The programme
has been included in the 20-Point
Programme of the Prime Minister
with 100 per cent Central assistance
to the States/U.Ts.
Strategies
The strategies laid down for achi
eving the objectives are (a) early
detection and regular treatment, (b)
multi-drug treatment to all the pati
ents in a phased manner, (c) educa
tion of leprosy patients, their fami
lies and communities, and (d) reha
bilitation of cured leprosy patients.
Infrastructure
NLEP is implemented as a ver
tical programme in endemic areas.
One leprosy control Unit for every
4.5 lakh population and one urban
leprosy centre for every 50,000 popu
lation have been established in a
phased manner since the inception
of control programme in endemic
areas. The infrastructure created
under vertical structure currently
cover 439 million population in areas
with endemicity of more than five
per thousand population. Survey,
Education and Treatment (SET)
Centres have been established with
in the framework of primary health
care centres. By the end of March
Swasth Hind
1987, as many as 601 leprosy con
trol units, 919 urban leprosy cen
tres? 215 district leprosy units, 6239
SET centres, 45 leprosy training
centres, 294 temporary hospitalisa
tion wards, 22 sample survey cum
assessment units and 11 leprosy re
habilitation promotion units have
been established.
Objective Performance
Till March 1987, as many as 3.3
million cases have been brought
under record of which 3.01 million
cases have been put under treatment.
A total of 2.59 million leprosy cases
have been discharged as cured/migr
ated/dead since the inception of the
programme.
Multi-Drug Treatment (MDT)
Keeping in view the prerequisites
and the large quantity of drugs re
quired for extending MDT simul
taneously to the whole country, it
has been planned to introduce MDT
in a phased manner to all the highly
endemic districts
by the end of
seventh Plan Period. MDT has been
extended so far to 48 high endemic
districts and five low endemic dis
tricts. So far, 13.50 leprosy cases
have been inducted on multi-drug
treatment in these districts. The dap
sone refractory cases are also being
covered under MDT throughout the
country.
Training
LEPROSY
—Part of Prime Minister’s 20-Point Programme
The National Leprosy Eradication Programme is of major public
health and social importance to the Govt, of India, for which reason
it finds a place in Prime Ministers 20-Point Programme.
Il is estimated that about 400 million people in our country re
side in moderate and high endemic areas of this disease. As many as
250 districts are affected. In view of this great magnitude of leprosy
problem, it has claimed complete political commitment at all levels
for its eradication.
The present programme had its beginning in 1954 but it has
rapidly expanded both in infrastructure and its content following the
adoption of a revised strategy for disease control. An important quali
tative change introduced in the programme is to provide multidrug
treatment (MDT) coverage in all the districts where the disease pre
valence is 10 or more per 1000 population in a phased manner. At
present, MDT extends to 41 districts in t(ie country and it is proposed
to cover another 40 districts by 1990.
The programme operates both in the rural and urban areas
through Leprosy Control Units, Urban Leprosy Centres and Survey,
Education and Treatment Centres. Leprosy Training Centres exist for
preparing trained manpower for the programme. In view of the time
bound nature of the programme and also because of proposed ex
pansion of MDT activities, it became necessary to assess the programme
and the first independent programme evaluation was made in 1986.
Even as it attempted to cover all facets of NLEP, the financial cons
traints and the time available did not permit the exercise to go indepth of various NLEP activities. However, it did produce a base
line data for future reference and brought certain weaknesses affecting
eradication activities besides providing valuable experience to the pro
gramme personnel for maintaining performance data.
The second evaluation meant to be an indepth exercise, particularly
of MDT—related activities. In the meantime, a number of new activi
ties have been introduced. MDT coverage is also being extended to all
those patients who have failed to respond in five years to continuous
dapsone monotherapy.
There are 45 leprosy training institutes/centres in the country invol
ved in imparting job-oriented train
ing to medical and para-medical staff
working under the programme. An
operational guide-book has been pre Voluntary organisation
pared as a complement to the train
Over 100 voluntary organizations
ing courses for the staff working
under the programme. About 13,000 are pioneers in the field of leprosy
para-medical workers and over 4000 control efforts. They continue to be
medical officers have been trained in involved in detection and treatment
leprosy at the above centres so far. of cases in providing training facili
January, 1988
ERADICATION
— Dr G. K. Vishwakarma
ties for the staff and in helping to
develop health educational methodo
logies besides providing vocational
and social rehabilitation of cured
leprosy patients. Their activities are
dovetailed with the activities under
the programme to avoid duplication
7
Early detection and regular treatment prevent deformities and disabilities.
of efforts. About a quarter of parti Rs. 70 crores for the Seventh Plan
cipating voluntary organizations are period. The target of achieving ar
provided with enhanced financial rest of the disease in 60 per cent
assistance as grants-in-aid under the of the leprosy cases by 1990 is likely
programme towards activities related to be held up due to inadequate out
to survey, education and treatment lays. During the sixth plan period,
of cases, maintenance of leprosy the expenditure under the program
cases and stipends to trainees be me was to the tune of Rs. 39 crores.
sides providing free supply of drugs. The outlays for the last three years
One of the districts taken up under of the sixth Plan have been enhanced
MDT is operated under the overall substantially due to high priority
supervision of a voluntary agency. accorded to the programme since
1982.
Budget
An amount of Rs. 14.4 crores
has been provided to the programme
for 1985-86 out of an outlay of
8
Training and Research Institute
(CLTRI), Chengalpattu, Schefflin
Leprosy Research Centre (SLRC),
Karigiri in Tamil Nadu and the Cen
tral JALMA Institute for Leprosy,
Agra, are functioning in India. The
thrust areas for research include
operational research for effective
treatment schedules and drug deli
very system, development of an cli
nical trials with vaccine against lep
rosy, and development of immuno
diagnostic tests for detection of le
prosy infection before the disease is
Research
clinically/bacteriologiWorld-known leprosy research ins recognised
titutes like the Central Leprosy cally. The Multi-Drug Treatment
Swasth Hind
regimen followed under the program
me has been adopted based on re
sults of operational studies under the
auspices of the C.L.T.R.L, Chengalpattu and SLRC, Karigiri in Tamil
Nadu. A vaccine has been develop
ed by the Indian Cancer Research
Centre, Bombay and is under field
trials under the aegis of the Indian
Council of Medical Research to
determine its effectiveness.
Monitoring
The programme is monitored
through periodic reports. Steps have
been initiated to strengthen the moni
toring and evaluation activities to
ensure rapid compilation, analysis
and interpretation data. It is propo
sed to organise effective central
monitoring of the programme by
creating necessary set-up at the
CLTRI, Chengalpattu during 198586.
tional and social rehabilitation of
cured leprosy patients. Under the
programme, facilities for medical and
surgical rehabilitation of patients
have been created in the form of 72
reconstructive surgery units. The
latest addition to this activity is the
sanction of seven leprosy rehabili
tation promotion units in highly en
demic areas to provide surgical reha
Rehabilitation
bilitation and also to act as nodal
point
for establishment of vocation
Prevention and control of leprosy
al
training
and production centres
has been receiving priority under
by
social
welfare
or labour depart
NLEP; but the socio-economic as
pects of the disease have been recei ments or by voluntary organizations.
ving the similar attention by the It is planned to involve the Ministry
voluntary organisations involved in of Social Welfare in providing mas
leprosy control activities. Greater sive support in provision of vocation
and closer cooperation between vol al training facilities to cured leprosy
untary organisations and NLEP is patients through voluntary organisa
O
being aimed in the area of voca tions.
the subject to educate the patients,
their relatives and the community
on the causation and control of le
prosy. The efforts are being stepped
up. The Central Health Education
Bureau, New Delhi plays a major
role in helping the programme to
develop suitable health education
material.
Problems
The programme faces the follow
ing problems in its implementation:
1. Inadequate priorities to this
programme by the States resulting
in a slow creation of infrastructure
and operation of the programme.
2. Several sanctioned
vacant in some States.
posts are
3. 10—30 per cent of the staff are
working without training in some
States.
4. Most of the States have yet to
repeal the outdated Lepers Act 1898.
Health education
SPREAD THE WORD
*
Leprosy is like any other disease. And it is the least infectious.
*
Leprosy is caused by germs.
*
Eighty per cent of leprosy cases in India are non-infectious.
♦
A pale or red patch on the skin may be leprosy.
*
Leprosy is completely curable with regular treatment.
*
Early detection and regular treatment prevent deformities and disabilities.
*
Help to overcome fear.
♦
Leprosy patients can continue to live at home and do normal work, while under
regular treatment.
*
Do not isolate leprosy patients.
It is neither hereditary nor a curse of the gods.
Do consult a doctor.
Encourage early detection and sustained treatment.
Accept them in the family and the community.
High priority is accorded to health
education during the seventh plan
period. During 1985-86, an amount
of Rs. 48 lakhs was provided for
development of health education
materials and purchase of films on
January, 1988
9
REHABILITATION OF
LEPROSY PATIENTS
Ajit bhowmick
There is no short-cut to rehabilitation of leprosy sufferers. Rehabilitation can be effected in a
number of ways depending on the type of disability, availability of funds and specialised
personnel. There could be no hard and fast rule in starting rehabilitation projects. The whole
effort should be directed towards helping the dehabilitated patients to return t*o self-sufficiency,
so that they can lead a normal life in the society.
T eprosy is a chronic infectious ones refuse to accept him in the
I—/disease resulting in disabilities family in any spontaneous manner.
and crippling- deformities. Next to The disabilities rather than the abi
Poliomyelitis, leprosy is known to lities of the patients draw the atten
be the greatest crippier. According tion of the public, and the victim of
to the Status Report of the Govern deformities is subjected to such a
ment of India, on an average 15 to severe social reaction that he finds
20% of the leprosy patients suffer himself stared in society. Thus, be
cause of the deep rooted public pre
from disabilities.
judice against the disease, the
The disabilities and crippling de leprosy sufferers are virtually ostra
formities are partly due to the dise cised in their own homes and society
ase, but are largely because of cer as well. Often deprived of their
tain other factors like burns, injuries hearths and homes, and having no
etc. due to loss of sensation. To the proper means to sustain their liveli
public, however, leprosy means a hood, many of the patients ultima
disease causing inevitable mutila tely take to begging. It is, therefore,
tion, disfigurement and progressive necessary that Rehabilitation in
deformity though much of the de leprosy should
be comprehensive
formities and disabilities can be pre encompassing physical and social
vented if timely treatment is given aspects. The WHO Expert Commit
and adequate precautions are taken. tee on Leprosy in its Second Report
The most agonising part in the life defined Rehabilitation {WHO Tech
of leprosy sufferers is that even after nical Report Series. 1960, 189, page
cure, the patient’s problems do not 20) as follows':
end. Whereas in other diseases the
“By Rehabilitation is meant the
patient as also
his relatives are
physical and mental restoration,
happy to see the patient well on his
as far as possible, of all treated
feet, away from the hospital, the
patients to normal activity, so that
reverse is the case with leprosy pati
they may be able to resume their
ents. Even his own near and dear
10
place in the home, society, and
industry. To achieve this, treat
ment of the physical disability is
obviously necessary, but it must
be accompanied by the education
of the patient, his family and the
public, so that not only can he
t^ke his normal place, but society
will also be willing to accept him
and assist in his complete reha
bilitation.”
Dr. Paul Brand, the well known
Reconstructive Surgeon, has aptly
said that in leprosy, rehabilitation
must be an integral part of the pro
gramme of prevention and treatment
and of final restoration of normal
social relation. He has held the
view that without effective rehabili
tation, leprosy control programmes
would be a total failure.
In many diseases, rehabilitation
is an after thought, i.e. it is assum
ed that rehabilitation should begin
only after the cure of the disease.
In some diseases this sequence may
be logical. However, in leprosy,
rehabilitation begins as soon as the
Swasth Hind
disease is diagnosed, because the
UNDP approves project for treatment and prevention of
surer and more economical method
of rehabilitation is to prevent phy
leprosy
sical disability and social and voca
The United Nations Development Programme (UNDP) has appro
tional disruption by early diagnosis
ved a project for treatment and prevention of leprosy in India. With a
and treatment. So long as a minor
UNDP input of 3341,000, the project will be for a duration of four
deformity does not impose any func
years.
tional restraint on the individual in
pursuing his avocation apd so long
While the executing agency will be shared by other developing coun
as it does not divulge him to the
be
the World Health Organization tries like Bangladesh, Pakistan and
society as a patient of leprosy, that
(WHO),
the government implemen South East Asian countries and, ul
individual does not face the pros
pect of displacement or dehabilita- ting agency will be the Department timately, the information gathered
tion. When a person afflicted with of Science and Technology through will be shared and transmitted to
leprosy loses the means of liveli the Bose Institute in Calcutta. The concerned authorities like the De
hood, it is not he alone who suffers, Government of India will make an partment of Health, Government
of India, World Health Organiza
but his entire family. Therefore, it input of Rs. 3,150,000 in kind.
tion and UNDP.
is very essential to prevent socio
Leprosy is a serious health pro
economic dislocation. The measures blem of the tropical and subtropical
The present project will act as
that are taken towards this direc
countries, of which India is one of.
complementary to other research
tion are known as ‘‘Preventive Re
the worst victims with about four
habilitation.” ■ If from the begin
million people suffering from the Programmes of UNDP, World Bank
ning leprosy patients are taken care
and WHO in their special progradisease.
of, they may not be displaced from
.mmes for research and training in
It is estimated that India has the tropical diseases.
their normal environment. By early
treatment, even patients with mini largest number of leprosy patients
mal deformities recover normal ap numbering about four • million,
The Bose Institute is an eminent
pearance and function. They have which is nearly 40 per cent of the basic science institute and is expec
thus a good chance to return to global estimate of 11 million ted to give the country ‘‘leads” on
normal life. The approach to reha patients.
which other institutions can build
bilitation should
therefore begin
Technical skill and expertise ge up their further developments.—UN
with prevention of dehabilitation.
nerated by this programme will also Newsletter, 12 Sept. 1987.
We should never allow dehabilita
tion to take place and afterwards
Leprosy is not a disease of beg
It is not enough to declare that
take up the uphill task of rehabili the patient is bacteriologically nega gars. It is a disease which results in
tation.
tive i.c. he is no longer infectious beggars. Nobody ever becomes a
and that he may return to his family beggar by preference. The leprosy
and to his work. When he is dis patients are forced to take to begg
charged from the hospital, he will ing because the community rejects
Rehabilitation of the cured cases
have to face the loneliness of an the patients after he is afflicted with
With the introduction of multi outcast and the poverty of the the disease and even after his com
drug therapy in leprosy, it is expect beggar. His family may not take plete cure. Hence, Rehabilitation
ed that the patients will become him in and his employer may refuse aims at making the patient a useful
non-infective .within a short span to take him back. All this means and productive member of his family
of treatment. This increased hope that we have to help the patient to and thus avoid the danger of dis
bestows greater responsibility on the prepare for his entry into the world placement both from his home and
part of Physicians, the Government again by giving training in some from the society.
and the Voluntary Organisations to crafts or trades so that he could
rehabilitate the
cured
leprosy earn his livelihood and lead a normal
The cured leprosy patients who
patients.
life.
need to be rehabilitated may be
anuary, 1988
11
categorised under four main groups.
The third category of patients stand to gain by it. It should be
These are:—
having severe deformities need looked at in its over-all perspective,
(1) Patients with, no obvious phy special attention. After surgical cor as a corrective measure in the in
sical deformity and whose rection, many of these patients will terest of economic structure of the
hands and feet are not anaesstill have a residue of deformity whole society; instead of the handi
5 thetic.
capped persons remaining a load
(2) Patients with moderate defor such as missing fingers or uncorrectable
contractures.
Many
of
them
and economic drag on the society,
mity.
(3) Patients with severe deformi are well able to work; however, it they can become earning members
ties, but not crippling defor is difficult for such patients to find of the society, and thus contribute
mities.
acceptance in industries outside. to its economic progress.” (“Lep
(4) Patients with advanced and For such patients, Leprologists ad rosy”, Volume 2, by Dr. Dharmendra
crippling deformities.
vocate setting up of Sheltered Indus Samant and Company, BombayThe first category of patients who tries. In many centres, these indus 400 028. Page 1386).
do not suffer from any defor tries are run on business lines. The
Rehabilitation can be effected in
mity or loss of sensation may not
patients are trained in some trades
a number of ways depending on the
need any special care. Some of them
and are employed. The only diff type of disability, availability of
may already be employed and may
not have been displaced. Only those erence between this and the other funds and specialised personnel.
who are displaced will need help industries is that in Sheltered indus There could be no hard and fast rule
and encouragement in finding a job. tries preference is given in recruit in starting rehabilitation projects.
In persons with loss of sensation in ment to patients with deformities, The whole effort should be directed
the extremities i.e. the hands and and the conditions of work are towards helping the dehabilitated
feet, the patients should be educated studied with special care to prevent patients to return to self sufficiency,
so that they could stand on their
about taking proper precautions for further deformity.
own feet and lead a normal life in
protecting their insensitive parts as
The only way of rehabilitating the society.
they are prone to get injuries.
the fourth category i.e. the crippl
In case of persons with deformi ed, severely deformed or blind lep
In a country like India, where
ties, the patients may need physio rosy patients who are not able to large scale unemployment of the
therapy and' surgical correction engage themselves in competitive able bodied men persists, it is not
before they can be actually rehabi work is to keep them in infirmaries so easy to rehabilitate leprosy pati
litated. Having had physiotherapy or leprosy homes. They are not ents in suitable jobs unless they are
and reconstructive surgery,
these infective and thus not a danger trained in some crafts or trades.
patients can be channelled into ordi to the healthy population from Vocational training is, therefore,
nary outside employment. Ideally, the health point of view. How the next step in rehabilitation. The
they should return to the work they ever, if they are not cared for, they training has to be in such an area
were doing before they developed often display their deformities in as to give the trainee a fair chance
leprosy. If this work is harmful public places in order to arouse the of getting employment which will
or closed to them, the patients need pity of passers-by and make begg support not only him but also his
to be advised about choosing a suit ing a gainful profession. * Some Lep family. In choosing a trade for the
able trade and actually need to be rologists advocate starting of pilot trainee, the degree, type and extent
helped in finding a job. If the pati projects for their rehabilitation to of disability or deformity of the
ents are unskilled, they should be demonstrate that even deformed and patients must be taken into account.
trained in some suitable craft or crippled patients can be gainfully Besides, the patient's own aptitude
and choice must be ascertained.
trade according to their aptitude employed.
The
patients with no deformities and
and capability. Whatever arrange
Dr. Dharmendra, the renowed Le- whose hands and feet are not anaes
ment is made for their rehabilita
tion, they should be taught specially prologist, has said that “Rehabilita thetic can be taught any trade or
about how to make correct use of tion work is not a work of charity craft that suits their intellect. The
their reconstructed parts, how to or compassion. Neither it is a work patients with minimal deformities
avoid injury and recurrence of ulcers wholly for the good of the handica can be taught only jsuch trades or
pped persons, though they obviously crafts where handling of sharp and
and deformity.
12
Swasth Hind
not objects or standing of walking
for long periods is not involved.
For patients with considerable but
not crippling deformities, the train
ing in some trades or crafts will
largely depend on the extent and
severity of the deformities and the
ability or the person to do a parti
cular type of work. In general,
some of the avenues open to them
are: Agriculture, Horticulture, Small
Scale Industries, Textile Industry,
Leather Industry, Light Machine
Tool and Engineering Industry,
Printing and Book binding Indus
tries, Cottage Industries like Candle
making, Mat weaving. Toy making,
Cardboard box making etc, Tailor
ing, Carpentry, Dairy farm, Poultry
rearing etc.
It has been found that model
farms maintained by leprosy patients
are admirable. Despite handicaps.
leprosy patients after a short course
of training become better and more
successful farmers than their heal
thier fellow villagers. Soil prepara
tion, composting, fertilisers, grafting,
seed selection, contour ploughing etc
can all be taught to the great advant
age and profit of the patients. The
breeding of chickens, rabbits, goats.
pigs etc. may also provide them a
good return for living.
Leprosy patients are prone to get
ulcers in their feet due to injuries
from outside and stresses from in
side. In order to protect their feet,
they are required to wear protective
footwears specially made from microcellular rubber without any nails.
Tn addition, different kinds of pro
sthetic appliances are required for
crippled patients or whose limbs are
amputated due to malignant growth
of ulcers. For them, there is a great
demand for microcellular rubber
footwears and other prosthetic ap
pliances. At present such demands
January, 1988
are being met in a limited way by
some of the leprosy centres which
have facilities for manufacturing
these products. A centrally located
“Footwear and Artificial Limb
Manufacturing Centre”, if establish
ed in technical collaboration with
those already engaged in manufac
turing these products, would not
only help the leprosy patients in
rehabilitating them in a useful
manner, but also cater to the foot
wear and prosthetic needs of leprosy
patients all over India.
Another area where cured leprosy
patients could be successfully reha
bilitated is to set an example by
employing them in our own offices,
centres and hospitals. This will not
only boost the morale of the leprosy
patients but will also give us
strength to persuade others to em
ploy cured and trained leprosy pati
ents in their establishments.
Realising the need for considering
the Rehabilitation Services as an
essential and integral component of
eradication programme, the Work
ing Group on Eradication of Lep
rosy in its report submitted to the
Ministry of Health and Family Wel
fare, Government of India, in 1982
had made the following recommen
dations:—
“Vocational training cum shelter
work centres available for physi
cally handicapped should also
open their doors to leprosy pati
ents. In addition, big leprosy
homes, hospitals or colonies
should have their own unit for
vocational training and produc
tion. The leprosy rehabilitation
promotion unit and the regional
leprosy training and research in
stitutes can act as a nodal point
for establishment of such voca
tional training and production
centres by the social welfare or
labour department or by a volun
tary organisation, to supplement
the effort of rehabilitation at these
medico surgical centres”. Report
of the Working Group on the
Eradication of Leprosy, Febru
ary 1982. Page 39.
In persuance of these recommen
dations, the Government of India.
under its National Leprosy Eradica
tion Programme established eight
Leprosy Rehabilitation and Promo
tion Units till the end of March
1985. However,
considering the
magnitude of the problem, many
more centres need to be established.
In this task, in addition to the Gov
ernment of India taking effective
steps, the voluntary organisation
such as the Hind Kusht Nivaran
Sangh (Indian Leprosy Association)
have also a big role to play.
Some successful Rehabilitation ven
tures of Voluntary Organisations
In the beginning, long before the
Government of India launched its
National Leprosy Control Pro
gramme in 1955, leprosy work was
carried out in India only by the
Missionaries and Voluntary Organi
sation. Even now, though the Gov
ernment of India is doing a lot to
control and eradicate leprosy in our
country, the Voluntary Organisa
tions (both national and internation
al) are also doing commendable
work in all spheres of anti leprosy
work, specially in health education
and in vocational and social rehabi
litation of cured leprosy patients.
To mention a few examples of vol
untary organisations which are runn
ing Training-cum-Production Cen
tres for leprosy cured as w'ell as for
persons handicapped by other dise
ases, the following centres may be
quoted.
13
Printing and Book-binding (includ
ing composing and exercise book
making). Tailoring, Spinning and
“Leprosy work is not merely medical relief, it is trans
Weaving (power-looms, handlooms,
forming frustration of life into joy of dedication, per
Ambar Charkhas), Carpet manufac
sonal ambition into selfless service.
turing, Leather craft (Chappals,
Shoes, Leather hand bags, Fancy
goods). Automobile engineering,
—Gandhiji
Coal briquette manufacturing. Brick
manufacturing. Handicraft, Paint
ing, Cane work, hand made Greet
ing Cards etc. It has a land of 300
(1) The WORTH Trust, Katpadi under its Rehabilitation programme
acres where intensive modern farm
(formerly known as the Swedish gives training in agriculture, dairy,
ing is being done. Besides manufac
Red Cross Rehabilitation Centre khadi and village industries. It is a
turing of conventional agricultural
for the Handicapped). The WORTH model centre which has successfully
implements and modified tools and
Trust (WORTH stands for Work experimented in rehabilitation of
gadgets for handicapped, the centre
shop for Rehabilitation and Train leprosy patients through agriculture.
is also maintaining
dairy farms,
ing of the Handicapped), now being
poultry,
and
goat
and
sheep
rearing.
(4) The Schieffelin Leprosy Re
a self-supporting enterprise, provides
employment for nearly 450 handi search and Training Centre, KariThese are but a few examples of
giri, near Katpadi (Tamil Nadu).
capped people of which nearly 100
the fact that given the initial finan
persons are leprosy cured. It has This centre, besides imparting train cial support and encouragement, the
ing in several trades, is also experi Voluntary Organisations with their
five production centres, the area
menting on domiciliary rehabilita dedicated workers can do substan
covered being foundry, light engi
tion of leprosy patients.
tial work for the training and rehabi
neering fabrication, production of
(5)
The
Vidarbha
Maharogi
Sewa
litation of the cured leprosy suffer
wind mill pumps, tractor trailers,
Mandal,
Tapovan,
Amravati
(Ma
ers. Besides a host of other Volun
agriculture dairying etc.
harashtra). The Mandal has a huge tary Organisations, the Hind Kusht
rehabilitation centre in which lep Nivaran Sangh (Indian Leprosy
(2) The Salvation Army Cathe
rosy patients are given training in Association), being the premier
rine Booth Hospital Training Centre
Carpentry, Printing, Poultry, Hand voluntary Organisation in India and
for the Physically Handicapped1,
looms and Power looms weaving, having branches in almost all the
Aramboly, Tamil Nadu. This Centre
Carpet making, Iron smithy etc. If States and Union Territories, is stri
caters for 50 trainees at a time. The the patients, after training, cannot be
ving hard to supplement the efforts
training, food, accommodation are rehabilitated at home, they are even of the Government.
provided free for the trainees who tually rehabilitated in the centre it
stay for 2 to 3 years and develop self.
There is no short cut to rehabili
knowledge and skill according to
tation of leprosy sufferers; there is
(6) The Maharogi Sewa Samiti, no other alternative than to give
their aptitude and ability. The train
ing is given in light engineering Warora, Anandwan (near Wardha). them vocational training in some
skills—fitting, turning, drilling, mill This Samiti which made a modest suitable trades or crafts. Provision
ing, shaping, electric gas welding, start in 1950, has now expanded into for Vocational Training and Rehabi
sheet metal work and spray paint a major institution with centres at litation, on a more urgent and wider
ing. Poultry rearing is also done five places. There are over 2000 basis, is both an obligation and a
in a small way. All instructors and leprosy patients under its institu responsibility of those others who
workers in the centre are ex-leprosy tional care. Some trades in which are not victims of leprosy. The
or physically handicapped people.
the patients are trained are: Tin- question to be asked is “Have we
cah Project (recycling old tins). Car performed it well and enough?” If
(3) The Maharogi Seva Samiti, pentry, Iron Smithy, Water manage not, there is still some time before
Dattapur, Wardha. This Centre ment training in Electric works, it becomes too late to act.
O
14
Swasth Hind
SOCIAL PROBLEMS OF LEPROSY
—A Doctor’s Experience
Dr Kunalc"Saha and Dr N. M. Chawla
During the 13 years’ experience of
numerous contacts with leprosy patients, the authors
feel, their problem can be classified into three categories—(a) doctor’s problems,
(b) social problems of patients and their families, and (c) leprosy beggars and
social problems.
are 32 million estimated
cases of leprosy in India, of
these about 25% suffer from defor
mities. About four lakhs have be
come socio-economically dislocated
and two lakhs are floating beggars.
Out of them 20% are infectious
and they form a rich reservoir for
spread.
here
T
Social Stigma
Ignorance about scientific facts is
the breeding ground for superstition
and misunderstanding. In case of
leprosy, wrong notions and misunder
standings are deep rooted in every
society of the world. As a result
leprosy is feared and it becomes a
dangerous disease in the eyes of the
common man.
Social Problems
During our 13 years'contact with
numerous leprosy patients as rese
arch workers on this disease, we had
experienced several social problems,
which can be classified in three cate
gories.
(1) Doctors' Problem: Doctors tre
ating leprosy patients in an urban
general hospital face several press
ing social problems. Most impor
tantly, a majority of doctors, specia
list or generalists, as well as nurses
January, 1988
and technicians are extremely apa
thetic towards these patients. Only
*5% doctors may touch them.
To illustrate these, we mention
our experience. A lepromatous
full-term pregnant woman with
labour pain went from hospital to
hospital to be delivered in a obs
tetrical ward at midnight, she was
refused admission in all hospitals.
finally she went back to the lep
rosy home, where she used to live,
and died of severe uterine bleed
ing due to some manouvre by an
unexperienced local woman in
mate. Another patient with severe
erythema nodosum, who needed
immediate hospitalization, could
not be admitted in our hospital,
since she had obvious signs of
lepromatous leprosy. Further no
ambulance could be available to
take this severely sick man back
to his dwelling place. What is
lamentable is that even nurses
were indifferent to these patients.
One ward sister refused to give
drinking water in a drinking pot
to a blind lepromatous womanj
but instead gave water in a toilet
mug to her, whom I admitted in
a medical ward several years ago.
This unkind action of the sister
was so painful to this elderly blind
woman, that next morning, when
I enquired about her physical
condition, tears welled up in her
white blind eyes with a vague
look towards me.
Often these
patients, when admitted in a
general ward were not given
any bed and were put on the
floor of the wards, infested
with rats and
cockroaches.
These vermin took the flesh out
from the ulcerated feet of these
patients when they were asleep at
night, who had no pain.sensation
and thus could not feel any pain,
The administration of the hospital
is also shamelessly apathetic to these
unfortunate patients. While we had
been treating these severely ill pa
tients in our hospital by a new me
thod developed by us (passive immunatherapy) all these years, most
technicians were antagonizing our
activities except a few. They made
official representation about their
safety to their union leader though
the Medical Superintendent. Surpri
singly, the hospital administration
also asked for our explanations about
the safety of the hospital staff.
[Contd. on Page 18]
15
OPERATION HEALTH CARE AT
Kum. Saroj Khaparde, Union Minister of
State for Health and Family Welfare, visited
the worst drought affected areas in the States
of Rajasthan and Gujarat with a view to assess
ing the medical care facilities for droughtaffected areas.
In Rajasthan, the Minister travelled exten
sively and saw at the first-hand the realities of
extreme natural conditions and calamities
which the people have been facing for years.
She discussed with men and women who were
engaged in drought relief work at various sites.
It was brought to her notice that diseases like
nightblindness, diarrhoea, malnutrition and
skin diseases were the burning examples of
consequences of severe drought. The Minister
also visited the hospitals, primary health care
units and had meetings with the higher offi
cials.
A new Scheme, Operation Health Care at
Drought Relief Sites, emerged. This new
concept envisages the idea of providing a tem
porary shelter, necessary health care which in
cludes supplementary nutritional program
mes and the health education component with
an emphasis to gear up utilisation of the exist
ing health care personnel starting from the
grassroot level up to the medical college pro
fessionals. This new concept can also give a
bonus by way of involvement of health per
sonnel in the realities of life—an opportunity
by which the drought conditions that have
been forced on people by nature can best
be utilised. This Scheme was launched in
the States of Rajasthan and Gujarat in the
worst drought-affected areas on the 19 Novem
ber, 1987, the birthday of the late Prime
Minister, Smt. Indira Gandhi.
16
Salient features
The salient features of the Scheme are:
In the Scheme, Rs. 1.05 lakhs would be pro
vided to three medical colleges each of Rajas
than and Gujarat. These medical colleges are
Dr. S. N. Medical College, Jodhpur, R.N.T.
Medical College, Udaipur, S.P. Medical Col
lege, Bikaner in the State of Rajasthan and
Medical Colleges at Baroda, Ahmedabad and
Jamnagar in the State of Gujarat. This finan
cial assistance would be spent on three Pri
mary Health Centres (PHC) attached to each
medical college. Thus Rs. 35,000 have been
earmarked per PHC.
The total expendi
ture on this pilot Scheme would be Rs. 6.30
lakhs for both the States. This amount would
be in the form of grant-in-aid to the State
Governments. Requisite orders have been
issued to the State Governments.
The salient features of the Scheme are ex
pansion of medical and relief activity at PHCs
and sub-centres in the form of:
(a) Manpower:—Doctors and students de
puted in the department of preventive and
social medicine of the medical colleges would
be mobilised to provide preventive and cura
tive medical facilities at PHC and sub-centre
and at the worksite. These personnel would
provide treatment, cent per cent immuniza
tion in the entire PHC, extra-supplement of
Vitamin A tablets to prevent nightblindness
health education in Angamuadis and Balwadis,
special care to children, expectant mothers
and older people and to conduct health and
nutrition survey.
(b) Other services:—The other services to
be provided at the worksite are:
(i) Health Education at the worksite will
be organised once-a-week.
Swasth Hind
DROUGHT RELIEF SITES
(ii) A first-aid box and clean drinking water
would be made available at the worksite.
ed children of the workers would also be pro
vided.
(iii) Feasibility of creche services for children
of the workers at the worksite is also being
explored.
(5) Health and Nutritional Survey of the
drought-affected people would be carried out
by the students to judge the impact of drought
conditions on the health status of these victims.
(iv) The Government of India would sup
ply free vaccine for coverage of the entire
population at the worksite.
(v) Extra supplement of Vitamin A tablets
would be.given to the State Government on
request.
The entire programme would be monitored
regularly.
Details of the Scheme
The parameters of this Scheme would be:
(I) In the State of Gujarat, the medical col
leges of Baroda, Ahmedabad and Jamnagar
and in the State of Rajasthan, the medical
colleges of Jodhpur, Udaipur and Bikaner
would be involved in this Scheme.
(2) Medical relief would be provided pri
marily in the PHCs and Sub-centres covered
under the ROME Scheme.
(3) The students would visit the worksites
once-a-week for treating those who are ob
viously ill and for Health Education purpose.
(4) A First-Aid Box and clean drinking
water would be supplied at the worksites and,
if possible, creches for keeping the unattend
January, 1988
(6) Immunization coverage would be provid
ed in the entire area of the primary health
centres on cent per cent basis. In case there
is any demand for vaccines from the State
Governments, the Government of India would
supply free vaccines. The rest of the Cold
Chain arrangements for immunization would
be dependent on the EPI Programme already
existing in these States.
(7) Extra supplement of Vitamin ‘A’ tablets
to prevent nightblindness would be given by
the Central Government to the State Govern
ments on demand and on payment by them.
(8) Advice ■would be given on nutritional
supplement to the ICDS Blocks, Anganwadis
and Rural Development Agencies working in
these PHCs by the medical students. Special
care will be given to children, expectant
mothers and older people.
(9) The work of the voluntary organisations
like the Indian Red Cross Society and other
agencies who are interested in medical relief
will-be coordinated under this Scheme as far
as their area of operation is concerned.
(10) Health Care Monitoring in these pri
mary health centres would also be done accord
ing to the Health Contingency Plan circulated
to the State Government in these PHCs under
the ROME Scheme.
O
17
Social Problems of Leprosy —A Doctor’s Experience (Contd. From Page 15)
All these disturbances created by
the medical personnel, from doctors
to technicians, we believe, were due
to their ignorance about scientific
facts of transmission of leprosy. This
ignorance created misunderstanding
even among the family members of
the doctors and technicians. Several
years ago we became sad to know
that a marriage engagement of a
woman technician was broken, when
the bridegroom came to know that
the girl worked as a technician on
leprosy.
(2) Social problems of the patients
and their family members:
who were once very intimate with
him, began to avoid him. This
was a great shock to this patient.
which totally disturbed his menial
equilibrium and finally., he ran
away.
Often some patients with ad
vanced infective leprosy, who out
wardly were not disfigured could
not be recognized by the general
public as leprosy patient. We
know at least two such women
patients, one lepromatous leprosy
case had plus four bacillary index
and another lepromatous case had
plus four bacterial load and pul
monary tuberculosis. Both had
infectious form of leprosy and
were working as maid servants in
well-to-do families residing in
good localities of Delhi. On the
other hand, one such lepromatous
man with plus three bacillary load
and foot ulcer was a panwala, sel
ling pan to the public on the
roadside.
A small unnoticed patch on the
body, once medically diagnosed as
leprosy, envelops the patients with
feeling of helplessness, shame and
dependency. He starts considering
himself as a potential outcast. Be
cause of this, his initial response is
to hide the disease and thus he is
not willing to attend the clinic for
treatment, with the result that the
disease progressively takes the
downhill course. This affects the
patient’s personality and behaviour Social and economic persecution of
pattern
adversely. Thus as the the patients
disease progresses, the patient may
As soon as the society knows that
spread the disease to his neigh
an
individual is suffering from lep
bours in the community.
rosy, he is socially uprooted. The
We knew a young borderline patient is not invited to any religous
tuberculoid patient, who had been or social function. He is refused
a cook in a very rich family for admission to an educational institu
several years. He had few anesthe- tion and public transport. More im
thetic patches on his body for portantly he looses his job and ac
. a couple of years. He used to commodation.
Thus he becomes
cover these patches by his uniform. isolated and dependent entirely on
Once detected by his employer, charity. These factors drastically
who herself was physician he be alter the personality of the indivi
came mentally very much upset. dual.
What really hurts
them
Thereafter he was not allowed by most is that children, though per
his employer to enter into the kit fectly healthy, are refused admis
chen and was put in the out house sion to schools and if some of them
as a chowkidar where his friend, are lucky enough to complete
18
schooling, they do not get even
the humblest of jobs. Thus the
family of the patient is left destitute.
Recently a young muslim child
less poor woman with multibacillary lepromatous leprosy, though
not disfigured, was under our
treatment. She was very much
mentally disturbed not from her
illness, but lor the constant fear
of separation. Her husband, being
instigated by the neighbours and
mullah used to threaten of divor
cing her and remarrying.
In muslim families, it is an usual
practice that husbands and wives
take food from same plate. This
woman's husband being afraid of
getting leprosy from her did not
take any food from the same plate
and so much so did not have con
jugal sex life. This caused tre
mendous impact on her mind. She
often bursted into tears before us.
On enquiry, the husband admitted.
to us that he had no masculine
power and refused to give his se
men sample for pathological exa
minations. We had known another
lepromatous woman with severe
uncontrolled lepra reaction. She
had several children and belonged
to the low socioeconomic status.
She used: to come to our hospital
for getting treatment, accompa
nied by her husband or occassionally her brother. Initially her
husband seemed to be devoted to
her, but at last became disgusted
with her illness due to terrible
social, economic and family pres
sure. Being depressed she com
mitted suicide. On the other hand,
we have also very devoted wife
helping her sick multibacillary
lepromatous husband who was a
rich business man.
Swasth Hind
Varying degree of social stigma.
This socio-economic stigma on
leprosy tends to vary in intensity
with type of society, country and
community. Thus the tribals, who
do not know much about leprosy
are less fearful of it. On the con
trary, the educated urban society is
highly prejudiced against leprosy.
We have already mentioned how
medical doctors, nurses and hospital
technicians often refuse to render
treatment to the leprosy
patients
requiring even emergency opera
tions and maternity care.
It is interesting to note the socio
psycho Logical behaviour
patterns
of educated middle class patients.
Most of them fear to go to leprosy
hospitals and to reveal their identi
ties, so they roam in front of the
outdoors of the leprosy clinics of
big urban hospitals.
The agents
easily recognize them and
send
them to the private clinics of the
doctors of the leprosy hospitals.
In this connection we may men
tion about the severe mental and
social pressures on
lepromatous
patients holding high position in
the society. This was once con
fessed by one middle aged highly
educated bacilliferous lepromatous
patient with foot drop. He was
a professor in a college, was a ba
chelor and held a good political posi
tion. He was always haunted with
the idea that he might be exposed as
a leprosy patient by his opponents
in the society and thus he might
lose all the high social status that
he was enjoying all these years.
Social problems
patients.
of
institutional
Patients approach leprosy institu
tion with different motives which
make an impact on their medical
needs. Some patients regard the in
stitution as their permanent resi
dence and have no desire to go out
and thus they are likely to neglect
their treatment. Others go to lhe
institutions as. a last resort and feel
a keen desire to return to their
family and community. They are
likely careful about their treatment.
Those who are completely disabled,
crippled or blind (terminal cases)
'cannot return to their society and
January, 1988
require long-term attention, which
is not always feasible within the
institution. Thus they have to de
pend physically as well as economi
cally on those who are relatively
fit enough to work, or conversely,
lhe relatively physically less handi
capped leprosy patients exploit
physically more handicapped ones
by taking them out for begging.
Finally there are patients, who after
treatment become
non-contagious
or ‘burnt out’, cases. But regretably,
most of them have no contact with
their families, have no home to get
to, are not accepted in their socie
ties. Therefore they need rehabi
litation badly. In most of these co
lonies, there are hardly any govern
mental help worth mentioning. The
authorities may provide only twe
days of physical work in a week
and that too not round the year.
The official agencies provide sonic
food rations (worth Rs. 80/- a
month) and clothing in these colo
nies. However, the ration provid
ed is highly inadequate. In these
circumstances, the patients have no
other way but to go out begging.
Often quite a large number of
these patients sell their ration and
clothings donated by voluntary
organizations. Finally they become
addicted to country liquor, ganja,
charas and bhang and indulge in
other anti-social activities.
Marriage of leprosy patients and. its
social and psychological problems:
Leprosy patients are also human
beings. They often live a longlife and
thus they cannot be deprived of
their biological functions and ne
cessities.
A young patient, when
medically certified safe to others,
e., he or she ceases to be an ac
i.
tive leprosy transmitter, may marry
and produce children. Unfortuna
tely, social stigma may adversely
affect his or her conjugal life and
even their off springs. Society has
no right to deprive these indivi
duals of their fundamental biologi
cal necessities. In the light of mo
dern knowledge, thre is no need for
special legislation on leprosy. Any
legal measure dealing with leprosy
patients and family planning should
form a part of the general public
health organizations. Infective pa
tients. on the other hand, should
not marry and should be discou
raged to produce children till they
arc clinically and bacteriologically
cured. This is specially true for
infective woman patients, because
lhe strain of child bearing and lac
tation may have severe adverse
effect on their disease course and
may spread infection to their off
springs through contact and by br
east milk containing millions of
leprosy germs.
Children born of such infective
patients are cause of real
social
and psychological problems. Seg
regation of these children in sepa
rate children home may cause psy
chological trauma on these children
because they are deprived of paren
tal affection and care.
On the
other hand, if they stay with their
parents with infectious form of lep
rosy, they may contract the dis
ease. Delhi Administration has a
boys’ and a girls’ home for these
apparently healthy children of lep
rosy patients, where such children
from four years of age are kepi, broughtup, sent to schools, given voca
tional training and rehabilitated in
the society. Some girls have become
trained nurses in government hos
pitals and start earning Rs. 800/per month: others are married and
settled in happy life while boys
have became motor drivers, fitters
and technicians. Thus these child
ren, though their number may be
insignificant with respect to their
total Indian figure, have been re
scued from this dreadful disease.
(3) Leprosy beggars and social pro
blems.
It is now agreed that begging is
primarily a social problem, and
not a medical one.
Because the
leprosy affected beggar suffers from
two stigmatisations, both as beggar
and as leprosy patients, he gets
isolated for fear that he might sp
read the diseases. He may be ar
rested by the police while begging
in the public places, detained in the
beggars’ home for one year and
then released. He again becomes
a beggar due to hunger, again ar
rested and the cycle is repeated.
Therefore the question of rehabili
tating leprosy beggars should pri
marily be a subject of administra
tion and not of public health.
O
19
VITILIGO—PHULBEHRI
Dr Sardari Lal
Patients must be told that Vitiligo the commonest cause of leucoderma —should not be con
fused with leprosy. This can be treated like any other parasitic infestation and deficiency
state.
itiligo is the commonest cause
V
of Leucoderma (white skin). It
is an acquired depigmentation of
skin and occurs without preceding
skin disease or skin damage.
Aetiology
The cause of the disease is not
known. Most accepted view is that
it is a genetic disease with domi
nant mode of inheritance. Family
history of the disease is available in
7.5 to 40% patients in different re
ports. Another view is that it is an
autoimmune disease.
Clinical picture
The disease occurs equally in both
sexes. It can start at any age after
infancy. The skin lesions are de
pigmented macules without any
change in texture of skin and with
normal superficial sensations. The
skin at the periphery of the macules
may be hyperpigmented. Some le
sions may show depigmentation of
hair, i.e., leucotrichia. The most
commonly affected sites are expos
ed parts’ like face, neck, hands, fore
arms, feet and legs. The disease
may start at one site or at multiple
sites.
It may remain localized or
become generalised. After certain
degree of progress, the disease may
become stationary. In about 25%
cases the disease may regress spon
taneously.
Differential diagnosis
Vitiligo may have to be differentiat
ed from a number of skin diseases
which show hypo/depigmentation.
Partial albinism is a congenital
20
disease showing depigmented macu
les. Pityriasis alba is a disease cha
racterized by recurrent hypopig
mented macules occurring on face
of children. Pityriasis versicolor is
a fungal disease characterized by
hypopigmented scaly macules in
which the fungus can be easily de
monstrated. Naevus anaemicus is
characterized by a hypopigmented
macule which fails to show whealing in contrast to surrounding skin.
Tuberculoid
(inacule)
Leprosy
is characterized by hypopigmented
macules with impaired/lost superfi
cial sensations and thickening of
peripheral nerves. Secondary depigmention due to skin damage or skin
diseases usually shows change in tex
ture of skin.
Management
Patient must be told clearly that
his skin lesions are not due to lepro
sy and he is not suffering from a
contagious diseases. The disease
being
only a cosmetic
pro
blem, treatment is not essential.
General measures to treat vitiligo
are the same that are applicable to
any parasitic infestation and defi
ciency state. Watch for spontaneous
recovery before starting any treat
ment.
Most popular treatment is photo
chemotherapy. Psoralens are used
topically in localized disease. Sys
temic therapy is carried out in wide
spread disease. Following topical ap
plication of psoralen solution, the le
sion is exposed to sunlight for half to
two minutes. For systemic use there
are two preparations—trimethyl
psoralen and 8-methoxypsoralen, the
former is preferred, for treatment
of vitiligo. The dose is 0.6 mg/kg
body weight, i.e., 20 to 40 mg daily
or on alternate days. One to two
hours after ingestion of the drug, the
lesions are exposed to sunlight for
five minutes and period of exposure
to sunlight is slowly increased till
erythema is produced. Because of
possible eye damage following this
treatment, the patient is advised
to wear sunglasses while going
outdoors.
Pigmentation
occurs
around hair follicles and at the peri
phery of the macules initially.
Corticorsteroids/ACTH is another
drug which is used by some derma
tologists and claimed to be benefi
cial. The author has rarely used.
this drug for the treatment of viti
ligo. Based on interviewing many
patients of vitiligo treated with this
drug by others and the author is not
in favour of using this drug because
of unconvincing benefit and side
effects of the drug.
Placental extract has been report
ed to be beneficial in some patients.
In resistant cases or for tempo
rary coverup, a pint of 0.3 mg of
potassium permanganate in 30 ml of
water can be used for the macules
on exposed parts.
Some workers have reported bene
ficial results by skin grafts in resis
tant cases. O
Swasth. Hind
LEPROSY:
Some Facts you should know
1.
2.
What is Leprosy?
5.
Leprosy is a communicable disease like any
other disease. The germ which causes leprosy
was identified by Hansen and so leprosy is
also known as “Hansen’s Disease”.
Leprosy can. affect anyone; rich or poor, old or
young, man or woman, educated or uneducated,
low caste or high caste.
6. How does the disease spread?
All leprosy patients do not spread the germ.
only 15-20% of leprosy cases are infectious. The
germ cannot live outside the human body. Re
peated close contact with infectious leprosy pati
ents may cause the disease. Like many other
diseases, leprosy
germs also spread through
coughing, sneezing, sputum etc.
7. Does environment have a role in spreading Lep
rosy?
In general, germs which cause diseases grow in
unclean surroundings. People who are under
nourished are more susceptible to these germs.
So, leprosy patients should avoid spitting every
where and coughing without covering their mouths.
As in the case of other diseases, personal and
environmental hygiene is very important in the
prevention of leprosy.
What causes Leprosy?
Leprosy is caused by a germ. The germ is so
small that you need a special instrument (micro
scope) to see it. Leprosy is not a curse from
God nor a result of sin, as many people believe.
3.
Is Leprosy infectious?
All leprosy cases are not infectious. Most of the
cases are non-infectious types and only 15-20%
of cases are infectious. Leprosy is least infectious
when compared to measles, tuberculosis etc.
4.
Is Leprosy hereditary?
Leprosy is not hereditary. Many leprosy patients
have children who are healthy. Leprosy patients
can marry and lead a happy life..
January, 1988
Docs Leprosy affect everyone?
21
A pale or red patch on the skin may be
leprosy. Do consult a doctor, immediately.
. 8. What are the signs of Leprosy?
One can suspect leprosy when he sees any one
or more of the following early signs:
* a pale or red patch on the skin and change in
9.
22
texture on any part of the body
* a raised or flat patch—dry, shiny or smooth
* a well demarcated patch on the skin which
does not burn or pain
* inability of certain areas of the body to ap
preciate touch, heat or cold. Tn other words,
loss of sensation with or without a patch
However, all skin patches may not be leprosy.
It can be due to some other skin diseases. Very
often people ignore patches. It is always better
to get yourself examined by a doctor if there is
a pale patch on your body.
Is Leprosy curable?
YES, leprosy is curable. Effective drugs are
now available which can cure leprosy completely.
If one takes early and continuous treatment, pati
ents will not only be cured completely but can
also be protected from deformities.
10.
Why do Leprosy patients develop deformities?
Leprosy damages some nerves and some patients
develop claw hands (bent fingers), foot drop (diffi
culty in lifting the foot upwards or dragging the
feet while walking) and difficulty in closing the
eye.
The deformities develop when they do
not report early for treatment.
11.
Can treatment prevent deformities?
Deformities can be prevented by early detection
and regular and complete treatment. Early defor
mities can be prevented by regular physiotherapy
which includes massage, special exercises and use
of splints etc. Some of the deformities can be
corrected by surgery. The best way to prevent
deformities is to ensure early, regular and, com
plete treatment.
12.
What causes the ulcers?
The ulcers are not caused directly by the leprosy
germ. Since the germ affects the nerves and leads
to loss of sensation in certain parts of the body,
the patient is unable to feel heat, cold or pain
and can get injured without being aware of it.
Swasth Hind
Leprosy is caused by a germ.
It is neither
hereditary nor a curse.
For e.g.: While cooking, the steam can cause
blisters on the hand, form an ulcer which gets
infected and leads to loss of the finger. The
patient can damage his feet if he/she walks
around without footwear. It is actually the
injuries from heat, cold, sharp equipment etc
that leads to ulcers.
13.
Is it necessary to isolate Leprosy patients?
Leprosy patients should not be isolated from the
family and the community. The leprosy patient
under regular treatment, can stay with the family,
lead a normal happy family life and continue
his/her vocation.
14. How can we encourage rehabilitation of Leprosy
Patients?
Family and community support is necessary to
rehabilitate the leprosy patients. Family members
and community need 'to be educated and motivat
ed to promote family rehabilitation—accept them
in the family and community. If we reject the
patients, they arc then forced to resort to • beg
gary.
January, 1988
15. Are there any welfare programmes that can sup
port Leprosy patients and their families?
P
The rehabilitation of leprosy patients, at the fami
ly and community level, is extremely important.
Children of leprosy patients often have (rouble
regarding schooling, in getting a job or setting
married.
There are several welfare schemes
which help the leprosy patients to get equal op
portunities
for education, employment
and
marriage. Several agencies help and support
leprosy patients, including the physically disabled,
in getting vocational training.
16. Is there a vaccine which can protect us from
Leprosy?
At present, there is no effective vaccine which
can protect us from leprosy. We hope that the
research being carried out now will be successful
in developing an effective vaccine in the future.
17. How many Leprosy patients are there in our coun
try?
There are nearly 15 million leprosy patients in
the world, of which 4 million cases (40 lakhs) are
in India. The incidence of leprosy is high in
23
states like Andhra Pradesh, Tamil Nadu, Orissa.
West Bengal etc.
18. What arc the programmes being planned to era
dicate Leprosy in India?
The National Leprosy Eradication Programme is
being implemented throughout the country with
special emphasis in endemic states. Government
and voluntary agencies are actively involved in
early detection and treatment of leprosy as well
as educating the community to accept the leprosy
patients in the family and community. A wide
network of leprosy control units, in both urban
and rural areas, offer free treatment to patients.
Leprosy patients can continue to live at home and dojnormal work,/
while under regular treatment.
Recently the emphasis has been shifted from
monotherapy to multidrug therapy. MDT is being
introduced in 15-18 endemic districts, in the
country and will be introduced in the remaining
endemic districts, in phased manner. The Gov
ernment of India plans to eradicate leprosy from
the country by 2000 A.D.
19. What arc the laws regarding Leprosy?
Since leprosy is not only a medical problem but
is also a major social problem, the government
and voluntary agencies, involved in leprosy work,
are concerned about the laws and regulations
which prevent leprosy patients from enjoying
their normal human rights.
Listed below are some of the laws:
The ‘Prevention of Beggars Act’ has a special
provision for arresting and sending to beggar
homes, leprosy patients found begging.
Some States have laws preventing leprosy patients
inheriting property.
The Hindu Marriage Act of 1955 allows people
to divorce spouses who have leprosy.
Leprosy patients are not allowed to rent a house
to live in.
The Motor Vehicles Act in some states do not
allow leprosy patients to have a driver’s licence.
The Life Insurance Corporation did not give in
surance coverage to leprosy patients but now it
is not so. They have also stopped demanding a
high premium from leprosy workers.
Some of the State Governments have challenged
and repealed the ‘Indian Lepers Act’.
The Railway Board allows the leprosy patients to
travel on trains and also gives concessions to
travel from home to the place of treatment.
20.
There is no need to isolate leprosy patients. Accept them in the
family and the community.
What can you do about Leprosy?
♦ Educate yourself and share and discuss the
correct information with friends and relatives.
♦ Protect yourself against leprosy by having
yearly medical check-ups.
♦ If you see the early signs of leprosy in anyone,
encourage them to go for an immediate check
up.
♦ Educate the family and others not to reject
leprosy patients.
♦ Accept leprosy patients in the family and com
munity and help them to lead happy, healthy
lives.
* Give equal opportunities for education, employ
ment and marriage to leprosy patients and their
children.
—Courtesy', unjcef
WHAT ARE THE MISCONCEPTIONS/PREJUDICES AND CORRECT
FACTS ABOUT LEPROSY
CORRECT FACTS
MISCONCEPTIONS & PREJUDICES
1.
Some people still believe that leprosy occurs due
to
—Heredity (from parents to children)
—Immoral behaviour
—Impure blood
—Faulty eating habits such as dried fish
•—Past sins etc.
1.
Leprosy is caused by a germ. It is a commu
nicable disease like tuberculosis, poliomyelitis,
diphtheria, etc. but spreads rather slowly com
pared to these diseases.
2.
Only 20% cases of leprosy are infectious and
may help in the spread of the leprosy infection
to healthy people. Mere touch with an infectious
patient does not spread leprosy. Prolonged con
tact with an untreated infectious case can spread
leprosy. Not more than 2 to 3 per cent of the
population develop leprosy in any endemic com
munity.
3.
Early sign of leprosy could be skin patch with
or without loss of sensation over the patch.
2.
People think that leprosy spreads in some fami
lies only. It can be contacted by mere touch.
3.
Leprosy is often associated with deformity.
Leprosy can be diagnosed only after deformity.
4.
Leprosy is highly infectious and infectivity
associated with deformity.
5.
Leprosy is incurable and children in families
having a leprosy patient always develop leprosy.
4.
Deformity is often not related Jo infectivity of
a patient.
6.
The attitude of the society is very unfavourable;
a strong negative attitude towards disease re
sults in non-acceptance of the disease and the
patient. The stigma may.lead to ‘rejection’ and
hatred of afflicted.
5.
Leprosy is completely curable.
If infectious
cases live within their family and do not take
treatment then only they can spread the infec
tion to the family members.
7.
Following type of practices are seen in the so
ciety :
6.
The disease must be accepted like any other
communicable disease.
The social stigma is
unjustified.
7.
People with suspected leprosy should come for
ward for confirmation of diagnosis and treatment.
8.
The Leprosy Act must be repealed by all the
States in view of the scientific facts about Lep
rosy. States of Maharashtra, Orissa, West Ben
gal, Tripura and M.P. have repealed the Leprosy
Act. The Act was never in force in Goa, Pon
dicherry, Rajasthan, Sikkim and Haryana. Par
liament has repealed the Act in 1983 in respect
of DTs without legislatures.
9.
Begger leprosy cases
disease.
is
—Shunning away from leprosy patient;;
—Social boycotting or keeping a social distance
from a family having a leprosy patient;
—Social harrasment of the patient and members
of his family;
—Refusal to help a patient of leprosy in retain
ing his job or place in family and society;
—Disinclination to know about the disease and
lack of cooperation with Leprosy workers.
8.
Lepers Act 1898 forbids a leprosy patient from
having a bath or washing clothes at a public
tap or travelling in public vehicle.
9.
All begger leprosy cases spread the disease.
January, 1988
often do not spread
the .
25
Welfare ot Leprosy Patients of Delhi
he role of voluntary organisa
tions in leprosy welfare cannot
be overemphasised. In Delhi, Hind
Kusht Nivaran Sangh, Kusht Rog
Seva Samiti, Leprosy Rehabilitation
Society,
The Leprosy Mission,
Missionaries of Charity, Lotts Carey
Baptist Mission and Rama Krishna
Mission have been working for the
welfare of leprosy patients for over
30 years.
Although Delhi is not an endemic
area for leprosy, but the continuous
influx of these patients from the
endemic belts into the city in search
of job has resulted in a great in
crease in their number.
Many of
these patients are squatting on the
roadside working in Dhabas, and as
maid servants, driving cycle-rick
shaws and live in unhygienic envi
ronment. Since leprosy is a socio
economic and medical problem, it
was felt that a joint action of the
above voluntary organisations and
conscientious citizens of Delhi inclu
ding medical personnel, scientists,
National Service Scheme (NSS)
Volunteers, industrialists and busi
nessmen is needed to strengthen the
national leprosy control programme
in the capital on a warfooting.
A co-ordination committee was,
hence, formed under the Chairman
ship of the Chairman of the Metro
politan Council of Delhi in 1985.
T
Activities of the Committee
Identification of leprosy cases:
Since there is no report of any field
survey of the prevalence of leprosy
in Delhi, the Committee has trained
NSS volunteers and medical person
nel of the School Health Scheme of
Delhi Admnistration to detect lep
rosy cases. Seven health check-up
camps were organized in Delhi with
26
the help of TB control officer of
Municipal Corporation of Delhi,
ophthalmologists of Dr. Rajendra
Prasad Centre for Ophthalmic Scien
ces, dermatologists of the All-India
Institute
of Medical Sciences,
research staff of the immunology
department of Vallabhbai Patel
Chest Institute and paediatricians
of the Maulana Azad Medical Col
lege, New Delhi.
The Committee has undertaken a
pilot survey of 4,000 school children
of Delhi with the help of the staff
of the school health scheme, Delhi
Administration.
For this purpose,
training-orientation programmes for
detection of early leprosy cases were
organized.
The Health Checkup Camps were
organized in different parts of Delhi
including Red-Fort, Karol Bagh,
Azadpur, Bal Grih, (Khyber-pass),
Remand Home (Delhi Gate) and
Leprosy Home Shahdara.
Gene
rous donations were made by the
Kusht Rogi Seva Samiti and Lotts
Carey Baptist Mission, Delhi, for
these camps. Three cases of child
hood leprosy cases were detected.
Rehabilitation: Raw materials
such as thread yam and dye-stuffs
were provided to arrested leprosy
cases for establishing handloom
work at Shahdara leprosy complex.
Three looms and four charkhas were
operation and 40 members were said
to have been benefitted on coopera
tive basis. To encourage the reha
bilitation further, two cycle rick
shaws, one cyclecart, five sweing
machines were also provided to these
patients.
The Committee also
arranged wedding receptions to three
couples, who are healthy children of
leprosy patients at the Delhi School
of Social work.
The Committee had also arranged
sports materials and vitamins, tonics
to children of leprosy patients.
Due to unprecedented drought
this year, the Committee has provid
ed handpumps to seven leprosy colo
nies in Shahdara and two hand
pumps at Patel Nagar Leprosy
Colony.
The Committee helped
the leprosy patients of Shalimar
Bagh in getting built-up quarters of
DDA at Raghuvir Nagar.
Education of Healthy Children of
leprosy patients:
Although the
Social Welfare Department of Delhi
Administration provided free board
ing and educational facilities to ins
titutionalized children, however, in
view of those children, who lived
in leprosy colonies and were depriv
ed of school education, a primary
school named Dr. Mohan Lila Soni
School for children of leprosy pati
ents at Shahdara was opened re
cently. at a cost of Rs. 15,000.
Another primary school is also run
at Raghuvir Nagar leprosy settle
ment colony.
During 1986, a Padayatra of lep
rosy patients and workers of the Co
ordination Committee, and N.S.S.
Volunteers started from Gandhi
Samadhi at Rajghat and ended at
the India Gate. It was arranged on
the eve of the World Anti-Leprosy
day to focus the attention of the
public on the problem of the leprosy
patients.
The slogan of the day
was Hamare Haath Apke Saath
(we are with you).
—Dr. Lila Soni, Sunil Prakash,
Dr. M.M. Chawla, Dr. K.N. Rao
and Dr. Kuhal Saha.
Swasth Hind
MAKING LEPROSY PATIENTS
SOCIALLY USEFUL
G. Ravindran Nair
Leprosy is not only a medi
cal and public health prob
lem today but it is also a ma
jor socio-economic conun
drum with serious psycho
logical overtones', the rea
son being primarily our lack
of proper understanding of
the disease. In this article
the author pleads for a bet
ter understanding and a hu
mane and rational attitude
towards the leprosy patients
so that their social ostraci
sm ends and they become a
useful partner of the society.
from its traumatic ordial.
While
the family sold their property bit by
bit to meet their basic needs, the
poor boy tried his hand at various
jobs, ending up as a helper in a tai
loring shop with a rented machine.
His earnings approximated a paltry
Rs. 5 a day. Tragedy again struck
him when he lost both his brother
and brother-in-law, resulting in the
added responsibility of looking after
two families besides his own1.
It
was then that the Domiciliary Reha*
bilitation Project of the Schieffelin
Leprosy Research & Training Centre
at Karigiri came to his rescue by
lending him. a new machine.
This
made a big difference in Subramoni’s
life.
His monthly income rose to
Rs. 350.
Not everyone is so lucky (if we
dare
call him so) as Subramoni, for
N the village Mettugudisai.
nine kilometres from Kari- the prejudices against leprosy and
giri, North Arcot District, Tamil those affected by it are so deep-root
Nadu, a little boy, twelve years old ed that rehabilitation of leprosy
Subramoni, was found to have a few sufferers has been a problem through
patches on his body. The doctor’s the centuries. Both the family and
diagnosis traumatised the entire society slam the door tight on even
family.
The poor boy was having the cured leprosy patients.
There
the first symptoms of leprosy. The are stray instances where matrimo
parents took him, to the Schieffelin nial alliances between educated fami
Leprosy Research & Training Cen lies flounder on the rocks when .the
tre in Karigiri, and since the disease news is broken that the bridegroom
was detected early, he was treated had once leprosy, but has now been
systematically and completely cured completely cured and1 has in his
of leprosy.
But, unfortunately, possession a medical certificate to
Subramoni could not resume his the effect.
The dreadful truth is
studies since he lost his father when that bulk of the people—even the
the family had not yet recovered educated------ hug the wrong notion
I
January, 1988
that leprosy cannot be cured.
All
this has made leprosy not only a
medical and public health problem,
but a major socio-economic conund
rum with serious psychological over
tones.
The
soul-searing social
stigma that sent several leprosy
sufferers into virtual exile in the
island of Molokai in the Hawaiian
Islands a century or more and for
whom Father Damien died a martyr,
himself contracting leprosy while
nursing their wounds of the flesh.
Spirit haunt millions
of leprosy
sufferers even today, with all our
pretensions to the high-vaunted ad
vances in science and technology
notwithstanding. The social ostra
cism and the crippling deformities
leave the hapless sufferers a lonely
brethren, smitten by abysmal agony
and driven to a kind of socio-econo
mic vacuum.
Few dare employ
them even after they are completely
rid of the scourge. Even non-infective and able-bodied patients have
to bear the cross, and may be depri
ved of the means of livelihood. Beg
ging is the only profession open to
them.
Where the victim happens
to be a head of the family, the
future is bleak for the entire family.
An entire family becomes rudder
less all of a sudden.
Who is to be blamed !
Can't we prevent the tragic drama
of this suffering and stigmatised
humanity increasing in their number
27
and migrating to distant places to infect the public, the disease having
escape social stigma and earn a run its full course, what with their
meagre living? Can’t we help them deformities due to lack of care and
from developing those loathsome timely treatment.
deformities?
We can if we care.
Early detection and treatment
That the problems of leprosy
makes
cure easy, and prevents deve
patients have reached alarming
lopment
of deformities.
In Tamil
proportions
over decades as of
Nadu
which
has
the
largest
number
the widespread apathy of the general
of
leprosy
patients
in
the
country,
public, more particularly of the edu
cated public and the medical profes school health surveys are doing a
sion, and on top of all, of the mass good job in detecting potential cases
media to the plight of four million in highly endemic areas, helping
leprosy-affected in our country. them get early treatment and cure.
Deformity occurs when, on the first It is necessary to take the treatment
signs of the disease, the patient runs regularly and for as long as the doc
The patients should
out of the family and society into tor advises.
hiding out of fear till the disease be treated in or near their homes as
runs its course and he gets the de far as possible so that they are not
formities.
Either he is afraid that dislocated and the problem of their
people should not know that he has rejection by the family after return
contracted leprosy or he is not from a leprosy hospital does not
aware that systematic treatment by arise. The treatment should include
monotherapy or multi-drug therapy simple methods of physiotherapy
such as oil massage and exercises
can cure him of the disease.
that can easily be carried out in the
Control and cure possible
home, though treatment should be
Control of leprosy and the resettle the responsibility of the local leprosy
But the basic question re
ment of the patients is possible only centre.
mains
that
with medical, facilities
when the public is enlightened suffi
in
the
rudimentary
stage, not to
ciently about the disease and on the
need for developing a humane and speak of the facilities for the treat
rational attitude towards the afflict ment of leprosy, domiciliary treat
ed. Let it be known that all patients ment has yet to become a reality
with leprosy are of infective, and for the largest number of the affected
that in our country only less than people.
20 per cent of the patients are in
fective. It should be made known
that all persons infected with lep
rosy bacillus do not get the disease,
and that over ninety per cent of the
infected persons destroy the bacilli
that enter their bodies, and thus do
not get the disease. , In a nutshell,
the virulence or pathogenecity of the
leprosy bacilli is very low.
The
public has yet to know that leprosy
is curable and that leprosy beggars
we find in the big cities and pilgrim
centres are those who can no longer
28
ters and officials from different De
partments and even from the States.
Rehabilitation process
In the process of rehabilitation the
education of the patients is as much
necessary as the education of the
public. Much of the deformity is
preventible if the patients are taught
the right use of their hands and feet
by protecting them against injury,
pressure and bums, if necessary, by
the use of simple devices; and where
the deformities have occurred, they
can be corrected by physiotherapy
and surgery.
Few can forget the
pioneering role played in this direc
tion by Dr. Paul Brand and the
Vellore Hospital in Tamil Nadu.
Rehabilitation is thus a long
drawn-out process requiring the co
ordinated activities of a number of
disciplines; the physician, surgeon,
physiotherapist, occupational thera
pist, social worker, craft instructor,
industrialist and the like.
It be
comes all the more complicated
when the patient is forced to leave
his home and, is not received back
even after cure.
Better not to
speak of those with disfigurement
forced by circumstances many take
to alms and tend to live in segrega
tion alongwith other sufferers welded
by the spirit of the bond of suffer
ing. One would wish that segrega
Of course, under the National tion were not there to facilitate reha
Leprosy Control Programme in India bilitation. but that remains a mere
introduced as early as 1955 we desideratum.
have been performing the tasks of
intensive case finding and arranging The Gandhi Kusht Ashram
for domiciliary treatment; we have
Beyond the eastern gate of the
also provided for temporary hospi
talisation of patients suffering from Taj Mahal in Agra is another won
acute complications caused by lep der about which people known very
rosy.
Late in 1982 we formed a little : the site of a leprosy patients’
well-planned strategy in eradicating settlement, the Gandhi Kusht Ash
leprosy by constituting high-level ram, which has become an ideal
For
bodies at the Centre with top minis centre of self-rehabilitation.
S was th Hind
long the migrating leprosy sufferers
from different parts of the country
to the tourist city of Agra lived on
begging, pitching their tents on the
7 April 1988: No-Smoking Day around the world
banks of Yamuna.
On 2nd Octo
ber, 1969, a. new day dawned for
those who lived on the doles of tou
he Fortieth World Health Assembly at the conclusion of its deliberations
rists : the foundation of an Ashram
in
Geneva lias called on all the member states to celebrate 7 April 1988,
was laid on the land belonging to
the forest department and the Jalma which will mark the World Health Organization’s 40th anniversary, as a
Institute.
The strength of the worldwide No-Smoking Day. In a strongly worded resolution, the WHA
so call on all manufacturers to observe'
families at this time was 25 and they delegates, representing 166 nations, al
took the pledge that they would a sales and promotion “truce” on that day.
henceforth never take to begging.
What with the help of a retired der Welcoming the WHA initiative in The event could also be used by
and
nongovern
interviews in Geneva, WHO offi governmental
matologist, the Jalna (the Japanese
mental
organizations
to
launch, or
Leprosy Mission for Asia) and a few cials drew attention in particular
nationalised banks, the patients have to the call for a voluntary “cease strengthen existing anti-smoking
fire” by manufacturers and sales drives and health promoting initia
been running a flourishing goatery
tives, noted Dr Masironi.
outlets next World Health Day.
unit in the Ashram area. The 150
goats they proudly possess can be
Each of the WHO Regions would
seen grazing around the shrubbery
“I? we can generate sufficient be working with the Geneva head
in their new habitat.
pressure at all levels, this proposal quarters to develop campaigns. The I
To meet the needs for a proper for a one-day truce could prove to Regional Offices in Alexandria,
Copenhagen, New
footwear which would prevent in be a powerful way of jolting people Brazzaville,
juries to their insenstive feet, the out of their inerda on smoking”, Delhi, Manila and Washington
patients have started making slip said Dr Roberto Masironi, who is would act as focal points for the
pers themselves. They were joined the coordinator of the WHO participating groups.—Tobacco Alert
by two patients who were trained Smoking and Health Programme.
April-June 1987.
in the Purulia Leprosy Centre in
shoe-making.
The shoe-makers
produce five pairs of micro-cellular
rubber sandals per day.
These
sandals are purchased by Jalma and
other leprosy control units. A vege
Gandhi Kusht Ashram could be
settlement.
Elections are held
table garden has also been started
every year.
For the 45 families an ideal to others, but the basic
with the help of irrigation from a
living in the Ashram, life is far question is should the leprosy suffe
tubewell provided by the Lion’s
better than it used to be when they rers live as isolated communities?
Club.
Low-cost tenements have
whined day after day for alms for Will they ever become part of so
been built with the help of Rotary
a living.
Today they have their ciety? We are waiting in the corri
dub and other voluntary organisa
own bank accounts and their child dors for the vaccine that could deal
tions.
The residents are provided
ren attend residential schools.
A the death knell to leprosy the same
with potable water, electricity, a
few are undergoing college and tech way we eradicated smallpox with
workshop for making candies, a
nical education.
There is a code the vaccine perfected by Edward
meeting hall and a congregation
Till then............... what
of conduct enforcing self-discipline Jenner.
room.
for all the inmates : no drinking and do we do ?
A panchayat comprising elected no more begging, no children beyond
office bearers looks after the day-to- two and work hard to the best of —Courtesy: Yojana, December 16-31,
day administration of the patients’ one’s ability to earn one’s livelihood.
1987
T
January, 1988
29
TEN YEARS WITHOUT SMALLPOX
Zdenek Jezek
Victory over smallpox has implications that go far beyond one disease. It provides an
outstanding example of what can be achieved when countries throughout the world join
together in a common cause. It reasserts human ability to change the world for the better
and creates a new, strong impetus towards Health for All by the Year 2000.
N 26 October 1987, the world
Smallpox was a common disease
tenth anniversary is therefore one
of the most important health miles*
tones achieved in the 20th century.
ed countless victims and severely
handicapped or blinded many of
those who survived. As long as it
remained endemic in any country,
there was a continuing threat of it
being introduced into other coun
tries anywhere in the world. From
this threat stemmed the idea of an
intensified, coordinated global effort
leading gradually from control of
the disease to its world-wide eradi
cation.
delegation
proposed a resolution
Owill have been 100 per cent free in most countries of the world un calling for a global smallpox eradi
from smallpox for ten years. This til the early 20th century. If claim cation programme, and this was
These ten years have proved in
controvertibly that:
— small pox has been eradicat
ed*
— no other poxvirus has replac
ed it;
. — millions of deaths, cases of
blindness and disfigurement
per year have been prevent
ed;
—
30
some US $1,000-2,000 mil
lion, urgently needed for
other health purposes, have
been saved each year as a
result of eradication.
The ravages of smallpox have
been one of the preoccupations of
the World Health Organization
(WHO) since its first session in
1948 when the World Health Assem
bly singled it out as an important
disease, and put great emphasis on
its control. In 1958 the Soviet
adopted by the Health Assembly a
year later. Although progress was
made in a number of countries in
the years that followed, the disease
was still endemic in 31 countries
with a total population of 1079 mil
lion in 1967, the year that WHO
launched its Intensified Smallpox
Eradication Programme.
Step by step the disease was push
ed back. The last known case in
West and Central Africa occurred in
June 1970, in Brazil in April, 1971,
and in Indonesia in January 1972.
South-East Asia posed many diffi
cult problems, but as a result of
extensive educational and vaccina
tion campaigns and with increasing
emphasis on surveillance and con
tainment, the disease slowly retreat
Swasth Hind
ed. One of the largest programmes
was carried out in India, with
its population of 600 million and a
long history of smallpox. Neverthe
less, it was in Bangladesh that
variola major, the most severe form
of the disease made its last stand.
Control activities were hampered by
disasters that included war, floods
and mass population movements.
Yet the last case there was reported
in October 1975.
Final victory
From Asia the focus of attention
shifted to East Africa. Since 1976.
the endemic foci were confined to
the Hom of Africa. In the Ethio
pian Ogaden desert, variola minor—
the milder variant of smallpox—
proved to be remarkably tenacious;
nevertheless, the last case
there
occurred in August 1976. In Kenya
the last case occurred at the- beginn
ing of 1977 and was due to an im
portation.
Then the'disease made a totally
unexpected reappearance, in August
1978. As the result of a labora
tory accident in Birmingham, Eng
land, two further cases of smallpox
occurred, one of which proved
fatal. Since then even though WHO
announced a reward of US §1,000
for the report of any new case which
could be confirmed as smallpox,
no reward has ever had to be paid.
As watchdogs, WHO had earlier
set up 21 international commissions
and the Global Commission for the
Certification of Smallpox Eradica
tion. These have one by one veri
fied and certified as being free from
smallpox all countries reporting
cases between 1967 and 1977 or at
special risk of importations.
In December 1979, the Global
Commission solemnly declared:
— . smallpox eradication has been
achieved
throughout
the
world;
In the spring of 1977, smallpox
spread widely
through southern
Somalia, which became the last for
tress of the disease. Large-scale
emergency efforts quickly succeeded
and the thousand-year-old chain of
transmission was interrupted in the
town of Merka, in southern Somalia,
where the last case was detected in
October 1977. Ali Maow Maalin,
a 23-year-old hospital cook, had
the dubious distinction of being the
last-known case of endemic small
pox in the world.
This was certified at an epochmaking session of the Thirty-third
World Health Assembly on 8 May
1980. It put the official stamp of
approval on the most outstanding
achievement in international public
health: the eradication, for the
first time in history, of a major
disease.
Ten years, nine months and 26
days had elapsed from the beginning
of the Intensified Smallpox Eradi
cation Programme until this last
case in Somalia. But the programme
staff kept up the hunt for any pos
sible further cases.
Even then the job was not quite
finished. It was necessary to convince
the world community that the dis
ease had gone for ever, and to en
sure that every advantage was taken
of the benefits of this achievement.
The Organization mapped out its
January, 1988
— there is no evidence that
smallpox will return as an
endemic disease.
“insurance” policy focusing on the
main goal:
safeguarding public
health by maintaining the world
permanently free from smallpox.
Every report of suspected cases of
smallpox was treated as a public
health emergency and properly in
vestigated. No one has proved to
be smallpox.
Since 1984, variola virus has been
confined to glass vials kept under
high security in two WHO Colla
borating Centres. Both centres are
inspected periodically by WHO ex
perts in microbiological safety. Cul
ture of variola virus has ceased at
both laboratories and neither has
plans to resume such experiments.
In order to free the world from
the need for vaccination regulations,
the national health authorities de
manded that a smallpox vaccine re
serve be kept in case of unexpected
emergencies. Such a reserve stock
has been maintained by WHO since
1980 and would be sufficient to vac
cinate about 200 million persons.
By 1985, all Member States had
discontinued routine vaccination
against smallpox. No country in
the world now officially requires a
certificate from international tra
vellers, and most countries no longer
vaccinate even their military per
sonnel against smallpox. WHO
hopes that the remaining countries
may elect to do likewise, since
vaccination of military personnel
involves risk for both the vaccinees
and their contacts.
Because of its close clinical resem
blance to smallpox, human monkey
pox became an .important disease
for surveillance. Since 1970, more
than 400 patients suffering from
monkeypox have been recognized
31
in seven African countries, mostly
occurring in small, remote villages
in the tropical rain forest. Despite
intensified surveillance human mon
keypox is viewed as an infrequent
and sporadic zoonosis that poses
neither significant health problems
nor a challenge to the achieved era
dication of smallpox.
Benefits of eradication
The first and
most important
achievement of eradication is the
prevention of human tragedies and
suffering. Back in 1967, an estimat
ed two million people died from
smallpox and each year 10 to 15
million more were affected. The
suffering, disfigurement, blindness
and bereavement that the world has
been spared since the disease was
stamped out are incalculable.
During the 13-year eradication
campaign
(1967-1979), the inter
national contribution is estimated to
have been about US § 98 million.
The endemic countries probably
spent twice this amount—about US
$ 200 million. So it is safe to sup
pose that globally, US § 300 million
were spent on eradication activities,
an average of US $ 23 million a
year.
Smallpox had cost the world
every year between US S 1,000 and
US S 1,500 million, when we add to
gether the production of vaccine,
the maintenance of routine vacci
nation, care and treatment of pati
ents, loss of productivity, mainten
ance of surveillance and quarantine
services, handling emergencies and
so forth. Since eradication that
annual burden represents a net sav
ing. So economic terms, the small
pox eradication programme is likely
to be one of the best investments
ever made by national and inter
national public health.
The release of funds which were
previously tied up for smallpox
could have a massive impact on
public health, provided they had
been diverted to health development
programmes. National programmes
of eradication were terminated, but
the strengthened capacity for national
surveillance remained.
Voluntary
workers and members of the public
were sensitized to offer their ser
vices for further cooperation with
public health services. Perhaps the
best dividends are the hundreds of
thousands of experienced, imagina
tive, tireless and dedicated health
workers who remain in the countries
and who serve as a solid base for
implementing other important public
health programmes.
Victory over smallpox has impli
cations that go far beyond one
disease. It provides an outstanding
example of what can be achieved
when countries throughout the
world join together in a common
cause. It reasserts human ability
to change the world for the better
and creates a new, strong impetus
towards Health for All by the Year
2000.—Courtesy : who.
To ensure prompt supply of the Journal quote your Subscriber Number and intimate the
change of address.
For all enquiries, please write to :
The Director,
Central Health Education Bureau,
Kotla Marg, New Delhi-110 002.
Swasth Hind
BOOKS
Management training modules
— for
Medical Officer.
Primary
Health Centre.
Sonina th Roy
et al. Published by National
Institute of Health and Family
Welfare (NIHFW), New Mehrauli Road, New Delhi 110067,
1987. Price not indicated.
Four approaches, viz. job analy
sis, interviews, participatory obser
vation and workshop have been
utilised for identifying the mana
gerial requirements and problems
at P.H.C. level and below. The
problems amenable
to change
through management training, have
been addressed to in the modules
under review.
Seventeen modules which toge
ther cover 81 hours and can be
taught comfortably in 14 working
days, have been presented in this
X /[ anagerial skills in varying volume. The topics covered in
implementation,
degrees are essential for the or clude Planning,
co-ordination,
monitoring
and
ganisation and development of the
evaluation
of
PHC
services,
super
health care delivery system. All
health personnel, even those at vision, teamwork, leadership and
the grassroot level, require a cer motivation, communication, com
tain minimum level of manage munity participation and personnel,
rial skills in order to ensure the financial material and patient re
delivery of comprehensive
and ferral system.
effective primary health care ser
Emphasis has been placed on
vices. Evolving of suitable train
development of management skills
ing programmes from a rationa
and not on theory, 80% of the
lised role reallocation of health
training time being devoted
to
personnel poses a challenge for
practical exercises and field work
trainers and health administrators.
which involve active participation
Modules
encouraging problem
of the trainee.
solving are important for de
veloping competence.
The book
Provision has also been made for
under review is the first
of evaluation of the course by the
series of managerial
training trainees and the trainers. An
modules ’ for the . different ca attempt has been in structuring
tegories of health
personnel at these modules as
independent
Primary Health Centre (PHC) le blocks which could be arranged
vel and below, viz. medical offi in any sequence which a train
cers, health guides
(male & fe er
considers
appropriate
for
male), health workers
(M & F), the given situation.
A possible
health assistants (male & female) training schedule has also been
and trained dais. These have re suggested.
sulted from a project co-ordinated
The modules, as presented, could
by N.I.H.F.W. involving Indian
Institutes, of Management at Ah- be put to use in one of several
medabad and Bangalore and the ways—as a basis for short-term
Gandhigram Institute of Rural management courses, as a part of
for self
Health and Family Welfare Trust Continuing Education,
and supported by a grant from the learning or as an integral part of
World Health
Organisation, Ge the basic pre-service training cur
riculum. The modules which have
neva.
Author's of the Month
Dr Subhash C. Kashyap
Secretary General
Lok Sabha Secretariat
New Delhi—110 001.
Dr. B. N. Mittal
Asst. Director General
and
Dr. N. S. Dharmshaktu
Deputy Asstt. Director General
Directorate General of Health Ser
vices,
Nirman Bhavan,
New Delhi—110 Oil.
Ajit Bhowmick
Honorary Secretary
Hind Kusht Nivaran Sangh
and
Secretary General
Indian Red Cross Society
1 Red Cross Road,
New Delhi—110 001.
Dr Kunal Saha
Prof, of Immunology
Vallabhbhai Patel Chest Institute
Delhi—110 007.
Dr N. M. Chawla
Leprosy Institute
CII/6, Pragati Market
Ashok Vihar
Delhi—110 052.
Dr Sardari Lal
Department of Dermatology and STD
Lady Hardinge Medical College
New Delhi—110 001.
Z de nek Jezek
C/o World Health Organization
1211 Geneva 27
Switzerland.
G. Govindan Nair
Freelance Journalist
New Delhi.
been scientifically developed will
help in * the development/im
provement of managerial skills
among medical officers of P.IJ.C.
and contribute towards achieving the
targets India has set for itself in the
field of health and family welfare.
The modules will benefit not only
the medical officers but also all
those interested in primary health
care and health management.
Dr. S. Venkatesh
ISSUED BY THE CENTRAL HEALTH EDUCATION BUREAU (DIRECTORATE GENERAL OF HEALTH SERVICES), KOTLA MARG,
NEW DELHI-110002 AND PRINTED BY THE MANAGER, GOVERNMENT OF INDIA PRESS, COIMBATORE-641 019.
Not viewed