WOMEN'S HEALTH EMPOWERMENT ISSUE-4
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- WOMEN'S HEALTH EMPOWERMENT ISSUE-4
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Women's
Health
Towards
A Collaborative effort of MOHFW & NGOs
ISStlC-4
Dear Readers,
We hope you enjoyed reading the previous
newsletter and found the information on ‘Wiser Old
Women’s Health’ to be useful as well as interesting.
The present issue focuses on Leprosy. Even though
leprosy continues to afflict a number of people, it is
00
no longer a major public health problem. As a result
of the very encouraging results from the intensive
use of treatment based on a combination of
antileprosy drugs, known as multidrug therapy
(MDT), the World Health Assembly in 1991
resolved to eliminate leprosy as a public health
problem by the year 2000.
The key to leprosy control is the attitude of the
community. A breakthrough can be made through
a change in knowledge, attitudes and practices of
society, and in particular of various influential groups, such as health practitioners and policy makers. This
newsletter is intended to promote such a change. It is hoped that the information that is included in the newsletter
will stimulate readers to make their own contribution to leprosy elimination.
The National Leprosy Elimination Programme (NLEP) is a Central Government sponsored programme and is
gradually being integrated within the Primary Health Care System. This programme is playing a key role in
fighting and eliminating leprosy all over the country.
A module on ‘Leprosy and Women’s Health’ at the State, District and Village level is available in English,
Gujarati and Hindi Languages at CHETNA. If you are interested in receiving it, please write to us. As mentioned
earlier, you will only be charged the cost of photocopying the material.
Please note that this is the last issue of the newsletter, “Women’s Health towards Empowerment...”
1
WHAT IS
,
_
LEPROSY ?
Leprosy is a chronic infectious disease caused by
Mycobacterium Leprae, an acid-fast, rod shaped
bacillus. The disease mainly affects the skin, the
peripheral nerves, mucosa of the upper respiratory tract
and the eyes, apart from some structures. It has afflicted
humanity from time immemorial. It is one of the diseases
feared over the centuries because of its potential to
cause progressive disfigurement, disabilities and
mutilations. The stigma attached to leprosy had often
led to ostracisation to the people afflicted, and their
families, by society.
Leprosy can affect all ages and both sexes. The incubation period can spread over several
years but is usually 3-5 years. It is transmitted directly from person to person through the
respiratory tract or skin. However, it is acquired through prolonged exposure and only a small
proportion of the population is affected. Untreated persons, in particular those who are smear
positive, are the principal source of infection.
0J
Although Hansen identified the disease - causing organism M. Leprae in 1873, the treatment
for leprosy emerged only in the late 1940’s with the introduction of Dapsone. This dramatically
changed the treatment policy of leprosy, from one of isolation of leprosy sufferers to treating
the disease as an outpatient basis. The life long treatment and development of resistant stains
of bacilli led to further research and introduction of the Multi Drug Therapy (MDT) in 1981.
Current regimen of fixed duration multi drug therapy of 6 months for Paucibacillary (PB)
cases, 12 months for Multibacillary (MB) cases and single dose ROM therapy for single lesion
cases has further made it possible to achieve the elimination of leprosy as a major public
health problem.
NATIONAL LEPROSY ERADICATION PROGRAMME (NLEP)
Leprosy is one of the oldest diseases known to mankind. To combat the disease, the Government of India (GOI)
launched the National Leprosy Eradication Programme (NLEP) in the year 1993, as a 100%centrally sponsored
scheme. The objective was to reduce the disease prevalence to less than 1 per 10, 000 population by the end of
year 2000.
Under the NLEP, free MDT services are provided in all the districts of the country through
District Leprosy Societies. Adequate funds are allocated for this and cash assistance
is also made available through state governments. Sufficient quantities of anti-leprosy
drugs are supplied free of cost to all states to meet their full requirement.
About 8.9 million patients have been cured with MDT. In India alone, there are
90% of the total global cured number of patients. In India, voluntary organisations
have played a vital role throughout the history of Leprosy Control in the country.
overcome tear.
Encourage early detectow
Anti leprosy drugs are also being provided to NGOs doing leprosy work free of
cost. If any of the patients are not availing free MDT, they should contact any of the
following officials. District Leprosy Officer of the District, State Leprosy officer in the State,
Directorate of Health and or DDG (Leprosy), DDGHS, Family Welfare, Nirman Bhavan/
New Delhi.
Source: Asian and Pacific, Women’s Resource and Action Series: HEALTH (1990)
LEPROSY AND WOMEN'S HEALTH
Women suffering from leprosy are doubly disadvantaged. Due to a culture of silence,
they usually do not complain about their illnesses and hence, the diagnosis and J
treatment usually gets delayed. In case of leprosy, social stigma is attached to both i
men and women who do not come forward for treatment on time, however, women
I
are more at a disadvantage. It is reported by several social workers that in a hospital,
registered cases of women having deformities are more common than male cases. V
The male cases are usually registered during the earlier stages of the disease. To
y
overcome this, more female health workers and anganwadi (creche) workers have
been trained to whom the female patients go for medical assistance.
Po not discriminate
because 1 am a
woman. I too deserve
fair medical
treatment M
9
Germs cause
leprosy. It is
neither
hereditary
nor a divine
curse for sins
committed in
previous life. If
It is common for a young unmarried woman who has undergone leprosy treatment and
is cured not to find a life partner whereas, a man does not face any such major problem
for marriage. Discrimination is also observed in surgical treatment. Even among families
who can afford, male patients get a priority for surgical treatment, whereas women
patients are neglected. There is a need to create health awareness about the disease
so as to remove social stigma attached to the disease.
Laws and legal provisions have been extremely harsh on leprosy patients through
centuries. It has been particularly biased where married women leprosy patients are concerned.
• In the Indian male dominated society, the wife is expected to be monogamous in spite of his faults
and misdeeds, and hence there are few instances of wives applying for divorce against their
husbands. Ironically, female patients have been and are, even now divorced by their husbands on
the grounds of leprosy.
HE HAS LEPROSY
SHE HAS LEPROSY
The Husband breaks the news to his wife
Wife: Leprosy is a terrible disease but you can be
The wife breaks the news to her husband
Husband: Stay away from me. I do not want to be
cured. Do not worry, I will support you.
infected by the terrible disease. Do not touch or go
near the children. Leave the house. I want a
divorce.
The man breaks the news to his family
The woman breaks the news to her family
Bad luck has befallen us, but these days leprosy is
Bad luck has befallen us.. Who will marry you
curable. We will take you to the hospital and pay for
now? You will be a burden to us for the rest of our
lives. Where will we get the money for your
your treatment. Do not worry, there will be no
problem in getting you married.
treatment. We have to keep this terrible news a
secret.
At the hospital
Doctor: We will treat you for your deformities and
At the hospital
Doctor: We will try to treat your deformities but
take you for surgical treatment as soon as possible
as you have come to us at the right time.
treatment.
After the Treatment
After the treatment
The family and wife accept the man in the family and
The family is not keen to take her back and mostly
the husband and children refuse to also accept
he continues with his normal life. If he was
unmarried, then he easily gets a girl who is willing to
marry him even though she knows that he was
suffering from leprosy.
unfortunately you are too late for surgical
her. If she is unmarried, it is very difficult to find a
husband for her. If she is married, then it is likely
that her husband will divorce her.
3
ELIMIHATIINQ LEPROSY
ELIMINATING LEPROSY
ELIMir-iAWG
Elimination of leprosy as a public health problem
Elimination of Leprosy can be achieved by:
ensuring regular health education at the
community level. Disseminating the message
that leprosy can be cured without deformities
refers to the prevalence of less than one case per
making MDT accessible to all communities and
10, 000 population. It is assumed that if prevalence
of leprosy reaches to such a low level, it should no
areas;
longer be considered a public health problem and
^treating all registered cases with MDT;
integration of leprosy with general health services
diagnosing and promptly treating all new cases;
will become possible. The NLEP (National Leprosy
Eradication Programme) of the Government of India
^improving the quality of patient care, including
has consistently guided the states of India to achieve
disability prevention and management;
the target of leprosy elimination. Availability of
multidrug therapy has proved to be extremely
ensuring regularity and completion of treatment;
beneficial in reaching nearer to the stated goal.
enlisting community support for the programme
THE CURRENT LEPROSY
SITUATION
Today, the global prevalence rate of leprosy is 1.4
cases per 10,000 people. In 1985, there were 122 Leprosy
endemic countries worldwide. In 1999, that figure reduced
to 24. Ninety percent of world leprosy is now confined only
to 12 countries.
The major leprosy elimination challenge in India is in the
following states, which contributed 71% of total country
caseload including higher percentage of cases of
consequences. Recorded cases in March 2000 in these states
is as follows: Bihar: 110664, Jharkhand: 385566 Uttar Pradesh
(UP): 98225, West Bengal (WB): 42440 Madhya Pradesh
(MP): 17806 Chhatisgarh: 18049 Orissa: 40717
Hidden cases are also likely to be higher in these States.
Approximately 804,000 new cases were detected
around the world in 1998. There were 820,000 cases on
the register at the end of 1998.Bhavan, New Delhi.
4^ With leprosy elimination defined as less than 1 case per
10, 000, the above states recorded the following prevalence
rates by March 2000:
It is estimated that about 2.5 million patients around
the world will be detected between 2000 and 2005.
Bihar: 15.40
Leprosy remains a health problem in 24 countries
situated mainly in the inter-tropical belt of the world. Of the
24, a total of 12 countries would have met the elimination
by the year 2000, special efforts will be needed to reach
elimination in 12 other countries which include India.
At present India has 61.1 of the world’s recorded
leprosy cases. That amounts to 4.61 lakh cases. In March
2000, India had 89% percent of the world’s cured leprosy
cases. That amounted to 8.9 million people out of a global
total of 10.00 million cured cases.
4
Jharkhand: 14.62
Uttar Pradesh: 6.20
West Bengal: 5.44
Madhya Pradesh: 3.57
Chhatisgarh: 5.62
Orissa: 11.46
Total eradication means zero case in any place at any
given time.
The members of the family and community should encourage leprosy patients to take regular treatment.
They should also aim at enabling people with disabilities to reach and maintain their optimal physical,
sensory, intellectual and social functional levels, thus providing them with the tools to change their
lives towards a higher level of independence. Community based rehabilitation is a strategy within
community development for the rehabilitation, equalisation of opportunities and social integration of all
people with disabilities. It is implemented through the combined efforts of disabled people themselves,
their families and communities, and appropriate health education, vocational and social services.
Social stigma is the chief cause of the social and economic dislocation that people affected by leprosy
experience. Addressing such stigma is an essential step towards reintegration in society. The
rehabilitation process must concentrate on overcoming the ignorance and prejudice that underline the
stigma. Education campaigns can achieve this. Other activities may include exhibitions, leaflets, drama,
street plays, films, and TV programmes. The media has a powerful role to play in this regard. Simple
messages like “Leprosy is curable - All it needs is your support’, Do not fear it, Treat it” may be utilised.
This goes a long way to change the community attitude.
Po not alienate leprosy patients. Accept them in
the family and within the community.
Source: Asian and Pacific. Women’s Resource and Action Series: HEALTH (i990)
NEED FOR A NEW APPROACH
"^Support early identification and voluntary referral
through a communication campaign
■^Raise awareness about the reasons for stigma and
its resulting trauma to the victim
Partner with local, national and international groups
•^Update legislation and vigilant enforcement to
assure the rights of those affected
-^Orient action to prevent disabilities and dehabilitation
"^Strengthen family and community networks
CHRONOLOGY OF SCIENTIFIC WORK
AND IMPORTANT EVENTS IN INDIA
REGARDING LEPROSY
1984 Repeal of the Leper’s Act in Maharashtra "
1984 International Leprosy Congress at New
Delhi
1986 First Indian Evaluation conducted and National
consultants appointed. District MDT society for
every district started
1987 Lepra India started work in India
1990 3rd Independent assessment of the programme
1991 Hundred percent Centrally sponsored Programme
started and elimination goal accepted
1994 Agreement with World Bank for Assistance for six
■yArrange meetings of people s representatives to
build political will.
Develop
years. All the districts in the country under MDT
Mobile control units for hypo - endemic districts
training
modules and kits for
started. 9.5 lakh Leprosy patients in India
1995 WHO/GOI 5th Independent assessment programme.
7.4 lakh Leprosy Patients in India.
front-line workers
1996 Second International conference on Elimination of
Undertake
and
support
research
evaluation
and
documentation
Leprosy at New Delhi.
1998 MLEC/Tamilnadu goes for integration
2000 VRC, step towards integration of leprosy services
2000 First Asian Leprosy Congress at Agra
5
CASE STUDY FROM RAJASTHAN STATE
Ms. Ratni Bai Khatik is a resident of Keer Kheda village in
Rajasthan State. She belongs to a backward caste and is semi-literate.
She was married at the age of 13 years but stayed with her husband for only
a year since she found him to be of immoral character. Inspite of repeated
persuasion by her family' she "refused to go back.
/
Since the last three years, she is associated with a grassroots organisation, the Centre for
Human Development (CHD), Chittbrgarh District, as a networker. Her responsibilities include
participation in training programmes and information dissemination by organising awareness
generation events. Her commitment, courage and perseverance in improving rural life has made a
continuing impact on the community. She informs the villagers about the importance of ‘educating
women’. She was also instrumental in setting up the local village school and played a key role in the
enrollment of schoolgirls. For this, she worked jointly with schoolteachers, parents and members of
the panchayat.
The creative aspects of her approach include use of local songs about physiology and hygiene, folk
stories and folk sayings. Health has been the other focal point of her activity. She regularly attends
training programmes on ‘Reproductive and Child Health, Sanitation, etc organised by CUTS-CHD.
She disseminates the learning among her friends during informal discussions. She encourages and
educates the villagers to either filter or boil their drinking water. The village women have started
analysing ‘the access of health services in rural areas’. Their interaction with health officials
have resulted in increased frequency of visits by health personnel and timely availability
\
of necessary drugs. They also have done some plantation work near the
drainage points; of-their houses. Ms. Ratni Bai Khatik has been a
catalyst in the formation of women’s self help groups (SHG)
in her village. This has had a multiple effects in the
neighbouring villages too.
IMPORTANCE OF PARTICIPATION^'M'^- IN TRAINING
Participation is a fundamental process within a group, because many of the other processes depend upon
(T)
participation of various members. Levels and degrees of participation vary. Some members are active
participants - talkative, demanding, volatile; while others are more withdrawn, quiet and passive. In essence,
participation means involvement, concern for the task, direct or indirect contribution to the group goal.
Participation by members is basic to the existence of a group. If members do not participate, the group
ceases to exist. But participation does not mean just physical presence or that everyone speaks. Silent
members could be listening very carefully. What needs to be identified and tackled are the members who are
“there but not there” those who are indifferent, uninvolved or could not care
less. They could be a detriment to the group.
The factors that affect member’s participation are the content or the task of
the group, whether it is of interest, importance and relevance, the physical
atmosphere, whether it is comfortable physically, socially and
psychologically, the psychological atmosphere, whether it is accepting and
non-threatening. Also important are the members’ personal preoccupations,
whether there are any distracting thoughts on their minds, the level of
interaction and discussions-is adequate information provided for everyone to
understand. Familiarity among group members is also critical.
6
Source: Asian and Pacific, Women’s Resource and Action Series: HEALTH (1990)
Experiences of Master Trainers and village Leaders
4!^
•j
■Ja
‘The women’s self-help group is gaining more confidence in their strength.
The project Women’s Health towards Women’s Empowerment has done a lot
in enhancing the self-confidence of these women. Now they are ready to fight
for their rights, for the safety of their family and against gender discrimination
and injustice existing in society.”
4^0
-Experience from the State of Kerala
“The pictures and illustrations were useful and
‘The modules used were helpful. On the basis of
effective. After the training, the women’s
those, we have prepared new case studies and
negotiating ability has increased. Now they have
illustrations on different subjects. We have
started talking more vocally with panchayat and
family members. They have even negotiated with
their husbands regarding the importance of health
the PHC staff.”
for both boys and girls. Village leaders are also
Experience from the State of Andhra Pradesh
encouraged village women to communicate with
motivated to go on house visits and spread
messages on health”.
Experience from
the State of West Bengal
“After the training, we have demanded better access to health services. People
have also started utilising government schemes. Women are making efforts to
increase employment opportunities through the panchayat. They have started
getting support from ANMs and Anganwadi workers. The women have taken
up some critical issues at the District level”.
o,
-Experience from the State of Madhya Pradesh
Source: Building and Strengthening of Manila Mandal. Dept. WCD Govt, of Rajasthan
References:
Books
ARTICLES
P~] A Guide to Eliminating Leprosy as a Health
problem: Second Edition 1997: World Health
Organisation (WHO)
Newsletter: ‘Haman Chitthi Aapke Naam’:
2000
The Diagnosis and Management of early Leprosy:
1984
Ff] Leprosy Control: Everyone’s Concern: UNICEF:
Health for the Millions: Leprosy: January February 2001
1984
Leprosy Elimination Disability Care and
Rehabilitation, Gujarat - Status Report and Action
pp[ A Manual for participatory Training Methodology in
Plan 2000
Development by PH I A: 2000
7
SOME INDIAN NGOS WORKING FOR THE
ELIMINATION OF LEPROSY
Andhra Pradesh
Assisi SevaSadan, Allapalli
GREVALTES, Vishakapatnam
Vimuti, Kakinada
' Bihar
Bharat Sevashram Sangh, Jamshedpur
Rajendra Kushtha Ashram Research and Training Centre,
Mairwar
Santhal Pahadiya, Seva Mandal, Deoghar
Gujarat
Gujarath Raktapitta Nivaran Sangh, Vadodara
Shram Mandirtrust, Sindhrot
Haryana
Hind Kusht Nivaran Sangh, Chandigarh
Karnataka
Katharina Kasper Leprosy Control Scheme, Bangalore
S umana halli, Bangalore
Maharashtra
Acworth Leprosy Hospital, Mumbai
Gandhi Memorial Leprosy foundation, Wardha
Kusht Seva Samiti, Dattapur
Maharogi Seva Samiti, Anandwan, Warora
Poona District Leprosy Committee, Pune
Vidarbha Maharogi SevaMandal, Amravati
Manipur
Leprosy Patients’ Welfare Society, Chingmeirang
Orissa
Dr. Isaac Santra Institute, Sambalpur
Andaman and Nicobar Leprosy Eradication Society
Tamilnadu
G REMALTES, Chennai
Sacred Heart Leprosy Centre, Sakkotai
Scheffelin Leprosy Research and Training Centre, Karigiri
8
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CHETNA Editorial Team:
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Input provided by: Dr. G. K Trivedi, Medical Consultatnt, CHETNA
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