LEPRA Society
Volume 3, Issue 2, 6 February 2016 Inside Cover Story …………...
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Project Events …………….
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Special Feature …………….
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Things you should know……..
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Previous Issue
Letters to Editors : Readers are encouraged to write to us at [email protected]. We welcome your feedback on this issue.
Cover Story Bike Ride 2016: Cycling for Funds The Bike Ride, which has been an annual feature for 19 years, is one of the main resource‐mobilisa on
events for Lepra in the UK. For many years the ride was held in Odisha and the bike riders not just cycled
but also got to visit LEPRA Society projects on the way besides interac ng with local popula on. This year,
the 20th and the last of the LEPRA bike rides in India and Madhya Pradesh (MP) began on January 24 a er
days and months of planning.
With a 10 member con ngent from the UK (some of whom have been coming to ride for years) and the
Indian member crew from MP, the ride got off to a flying start at Indore Hotel Lemon tree. At the
inaugural ceremony a presenta on on LEPRA Society’s work in MP was followed by the unveiling of
brochure in English. The ride was flagged off by Dr Sharad Pandit, Divisional Joint Director, Health and
Family Welfare, Indore.
On this trip the bike riders got to meet different communi es, beneficiaries, stakeholders and others
besides the local inhabitants at Indore, Maheshwar, Sanawad, Khandwa, Burhaanpur, Pandhana,Chiriya,
Khargone and Barwah. Enroute, they also visited the St Joseph’s Leprosy Centre (SJLC) at Sanawad which
is well‐known for performing over 1,000 reconstruc ve surgeries. LEPRA Society’s associa on with SJLC
dates back to 1993. The bike riders got a glimpse of the work being done by the centre.
The Bike ride culminated at Indore on February 3 with a short closing ceremony followed by a dinner.
Sandra Hornes, who has par cipated the maximum number of mes in the bike ride in Odisha and MP,
was felicitated for her contribu on, enthusiasm and inspiring others to take part in the Bike ride. The
tremendous effort of the par cipants over the years was acknowledged and recognised by LEPRA Society
as this helped support a large number of people we work with.
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Project Events LEPRA UMEED ‐ Distribu on of MCR footwear and ulcer care kits As part of the An ‐leprosy fortnight a programme was organised for distribu on of MCR footwear and ulcer kits to people with
whom LEPRA Society works. This small programme, held on February 8,
was planned by LEPRA Society’s Head office and arranged by Umeed at
Nallakunta Leprosy Referral Centre (NLRC). A total of 30 people with
whom LEPRA works with par cipated in the mee ng. Sunder Prakash,
Sathiraju, Jayaraman and Radhika Rajamani, from the Head Office,
Swamy Reddy, Dr Arunabala, Narasimha Rao and staff of UMEED
project, Subba Rao from SLAP
and some students who are
beneficiaries of educa on support took part in the mee ng. One of the
philanthropists Bitla Venkateshwarlu (father of donor Rahul Bitla of
Ambika Charan Founda on) also par cipated.
Mr Narasimha Rao PT welcomed all the people present. A brief idea
was given by Radhika Rajamani on the methods of fund raising and
u lisa on of funds. Subbarao explained about SLAP and thanked LEPRA
Society for providing the services through the Referral Centres. He also highlighted problems in the colonies and community.
SathiRaju explained about the An ‐Leprosy fortnight programmes. The theme of this fortnight is “to ensure that there is no
new case of child with disability due to leprosy”. He stressed on the importance of new case detec on without any delay by
various methods like house‐to‐house search. He suggested that SLAP should encourage and mo vate the colony youth to
perform house‐to‐house survey to detect early new cases of leprosy. Bitla Venkateswarlu promised to support for providing
100 pairs of footwear for the needy pa ents every year.
Some of students who benefi ed by the educa on support from LEPRA Society shared their views on how they are able to
pursue their dreams and overcome the financial hurdles in educa on with the help of LEPRA Society.
Subsequently five beneficiaries were presented with MCR footwear, while ulcer kits were distributed to 10 others.
A vote of thanks was given by Sunder Prakash wherein he thanked the supporters, Twin Area Round Table Charitable trust
(Member of Round Table India), Sri Krishna Enterprises, Rahul Bitla – Ambika Charan Founda on, Shri R.D. Sarma – Gomathi
Durgananda Sarma Charitable Trust and Milestone, Secunderabad.
An ‐Leprosy Week Celebra ons Odisha KORALEP project ‐ Nabarangpur district KORALEP project observed An ‐Leprosy Day (January 30) this year in Nabarangpur Municipality area of Nabarangpur district as
the prevalence rate is high. Various events were organised to observe the Day. The An ‐Leprosy Walk started at 8.00 am
from Gandhichouk, Nabarangpur which was flagged up by Dr. Rabi Narayan Sahu, DLO, Nabarangpur. There was a long
procession of GNM trainees, Health staff and Koralep staff. A vehicle decorated with banner, with mike announcement facility
moved slowly behind the rally. The students held display cards with important messages and they distributed pamphlets‐
related essen al message about leprosy. Covering the main road, Nua Bandh Sahi, Gandhi Chouk for one hour, the procession
reached DHH Nabarangpur.
An awareness mee ng was held at DHH Conference hall, Nabarangpur followed by a Quiz compe on. 10 students were
awarded with cer ficates. N.N.Sahu, CHC welcomed the guest and others. Firstly, MTS Rao, DNMS briefed about NLEP ac vi es
and welcomed the dignitaries for inaugura on and ligh ng the lamp.
Dr.R.N.Das, DLO, Nabarangpur addressed the mee ng and pre and post elimina on of NLEP programme. He expressed the
thanks to LEPRA for their contribu on in the district and suppor ng government. Everybody has to join hand to eradicate
leprosy from our county. Unless community par cipa on none of the programmes will be successful.
Dr.Das, DMO, Nabarangpur shared his thoughts of s gma and discrimina on of leprosy and how it can be overcome by MDT
and health services. He also thanked LEPRA for the services rendered in the Nabarangpur district and its effort to reduce
leprosy from this area. He also expressed ‘hate leprosy but not to pa ent. Everybody should know about leprosy and avail the
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government services.’ Dr. B.R.Mohapatra highlighted the importance of ANM and health field staff in NLEP. N.N.Sahu
Community Health Coordinator ended with a vote of thanks.
KORALEP Project The An ‐Leprosy Walk was organised by Koralep project in collabora on with the Sub‐ Divisional Hospital, Jeypore during the
An ‐Leprosy week on February 2, 2016. The An ‐ Leprosy Walk began from Raja Nagar. It was flagged off by Dr. Dadhibaban
Tripathy, SDMO, Jeypore. The procession included 150 ANM trainees from two ANM training centres, health and Koralep staff.
The IEC van with banner and mike announcement facility moved slowly behind the rally. The students held display card with
important messages and distributed pamphlets with essen al informa on about leprosy. A er passing through main road, NKT
road, Welcome chouk, the walkers reached Sub‐divisional Hospital, Jeypore.
An awareness mee ng was held at SD hospital conference hall, Jeypore followed by a Quiz compe on among par cipants. 10
students were presented with cer ficates. N. N. Sahu, CHC welcomed the guest and others. Dr. B.R.Mohapatra, MO, Koralep
chaired the func on and Dr. D.B Tripathy, SDMO, Jeypore was chief guest. Prabhudan Bhotra, Sr.Journalist was guest of
honour. Rupasi Manjari Nayak briefed about NLEP ac vi es and welcomed those present for inaugura on and ligh ng.
Dr. D.B.Tripathy addressed the mee ng. Dr. B.R.Mohapatra, MO Koralep, shared in detail causes of leprosy, treatment
availability and role of health workers in NLEP ac vi es.
Prabhudan Bhotra, Sr.Journalist, Jeypore par cipated in the mee ng as guest and spoke on community par cipa on and media
involvement for early detec on of hidden leprosy cases.
N.N. Sahu Community Health Coordinator organised a spot quiz among par cipants and 15 par cipants won prizes. The
programme concluded with a vote of thanks.
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Andhra Pradesh LEPRA Society – NTDRU LEPRA Society, NTDRU in Andhra Pradesh observed An ‐Leprosy Fortnight 2016 in the districts of Vizianagaram, Krishna,
Guntur, Prakasam and Chi oor. The three Referral Centres, SANKALP‐A Community‐based Health Project addressing Leprosy
and LF, Arogya Darsini ‐ Mobile IEC and Health Van, Mobile Health Clinic, Sreyassu CBO were also involved in genera ng
awareness in schools and in communi es on leprosy. The theme “to ensure that there is no new case of child with disability
due to leprosy” was focused. The ac vi es are designed based on the objec ves of observing the An ‐Leprosy Fortnight. The
ac on plans were shared with the DLO s of concerned districts.
Fi y‐seven volunteers in the field along with the project team did 40 Group Mee ngs with Self‐ Help Group women (487),
Youth (262), Senior Ci zens (179), persons affected with leprosy (69) and covered 997 people. They were made aware on
leprosy signs and symptoms, transmission and treatment facili es. Seventeen orienta on programmes were done with ASHA
(642), ANMs (148), AWWs (35) and government medical staff (89) covering 914 health and ICDS func onaries. To generate
awareness massively, 12 rallies were organised in villages and town areas with 1,758 students, 30 Women, 210 Government
Health Staff, 24 persons affected with leprosy. Three mobile exhibi ons were placed covering 534 people. The School Educa on
Programmes in the form of health talks and Elocu ons (10) were conducted and 3,477 students and teachers par cipated in
these programmes. The IEC van used for dissemina ng informa on on leprosy covered 304 people in three shows. The survey
was done in the community and schools in 16 sites covering 1,425 households, while 4,016 members were examined. Among
these 38 suspects were referred and 5 were confirmed and kept under treatment (4 PB Cases and 1 MB Case).
Bihar and Jharkhand Bhagalpur district The walk to beat leprosy was observed at Bhagalpur on the January 30. This day was chosen in commemora on of the death of
Gandhiji, the leader of India who understood the importance of leprosy to focus a en on and create awareness on this disease
also known as Hansen’s disease. Raoul Follereau created World Leprosy Day in 1954, with the inten on that people affected by
this disease could avail medical care like all others who are ill, and also that the healthy could also be cured of their absurd fear
of this disease. The an ‐leprosy day hopes to make states formulate policies that will disseminate informa on about leprosy,
the fact that the disease is wholly curable.
Organisa ons also hold rallies to raise awareness in community providing treatment and rehabilitate those afflicted with the
disease. In addi on, seminars and workshops are held around the districts to address the problems faced by leprosy pa ents
and to find ways to reduce the social s gma faced by them.
More than 300 school students, 15 teachers, 100 ANMs, 50 persons affected by leprosy, NLEP staff, DHS members and local
NGOs Safali Yuva club, joined in the five kilometres walk. The walk, which started from District Hospital under the leadership of
civil surgeon further covered different streets and slum areas, was followed by health exhibi ons focusing on leprosy,
distribu on of footwear and self‐care kits to persons affected by leprosy. The awareness mee ng‐cum‐health exhibi ons were
addressed by District Officials, Professor, Teacher, NGO representa ves, LEPRA programme team, and community stakeholders.
The mee ng started with the observa on of two‐minute silence in the memory of "Bapu". Gandhiji’s statue was also garlanded.
The favourite prayer of Gandhi 'Raghupa Raghav Rajaram Pa t paawan Sitaram, Ishwar Allah tere naam Sabko Sanma De
Bhagwan' was sung by all par cipants. These people stressed that leprosy is a chronic infec ous disease and its organism is M.
Leprae. The infec on spreads through minute respiratory droplets, but the course that the disease progresses through puts the
pa ent through psychological stress, severe mental and physical pain. In fact, it affects the nerves and the skin, if not treated
sufferers can become blind, lose the sensa on in their hands and feet; and become prone to a disability through the threat of
injury. It results in isola on, discrimina on and fear amongst the healthy. So, there is need among the community to fight
indifference towards people with leprosy and to accord them the dignity and respect that they deserve. This day also marks
many field ac vi es like distribu ng leaflets, pamphlets, gree ng cards, review of books, research materials, seminars, and case
study of people affected by leprosy. Skin screening of 55 cases have been done by the NLEP team. The contact survey of MB
and child cases will be done during the leprosy fortnight. The customised footwear and self‐care kit was provided to 52 persons
affected by leprosy. They applauded the effort of LEPRA Society for crea ng awareness, removal of social s gma and
discrimina on from the community. The LEPRA team and District Health official focused on social rights and inclusion of people
affected by leprosy. They repeated the message of Gandhi ji "Jan‐Jan ki yah Pukar, Kustha Marij Ko Bante Pyar". The electronic
and print media was also urged to cove the ac vity for dissemina on of message to community.
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Munger District The An ‐Leprosy Day is observed at Munger with coordina on and support of District Health Society and Educa on cell. The
rally was conducted on 69 Martyr's day of Mahatma Gandhi. More than 200 school children, seven teachers, 25 general health
care and NLEP staff took part in this rally which was flagged off by Civil Surgeon and Communicable Diseases Officer jointly from
District Hospital Munger. The rally passed from different streets and slums areas spreading the message for reduc on of social
s gma and discrimina on. They were disseminated the message about "Early detec on and Early treatment". The rally was
followed by awareness mee ng which was addressed by District Health official, teachers and project team of LEPRA Society.
The importance of MDT and its availability at PHC level was informed by Communicable Diseases Officer. The preven on of
disability and its mechanism was also imparted in the mee ng. The delivery of quality of services was stressed and
enhancement of pension scheme under Bihar Shatabdi Kustha Kalyan Yojana. This benefit should reach persons affected by
leprosy. The project team also decided with NLEP staff for ini a on of contact survey of MB and child cases of leprosy in
Munger district.
Begusarai District The An ‐Leprosy Day, 2016 was celebrated on January 30 with a view make the people aware of their role to fight indifference
towards people with leprosy and to accord them the dignity and respect that they deserve. The vision and mission of the
Leprosy day was ‘A World without Leprosy’. A rally of 150 school children and NLEP staff was started from District Hospital and
flagged off by Dr Ashesh Kumar, Communicable Disease Officer, Begusarai. The rally moved through various streets and slums
of the district with the message for removal of myths and misconcep on of leprosy. It was followed by mee ng at Gandhi
Library. The eminent guests including District Magistrate Sima Tripathi, Dr Hari Narayan Singh, Civil Surgeon and other district
officials observed the two‐minute silence and garlanded the statue of Gandhi. They were explained about social s gma and
prejudice of leprosy. They discussed about the love and affec on of Gandhi with persons affected by leprosy. They requested to
all that the services of social en tlement should be extended for persons affected. The mee ng concluded with a message of
Mother Teresa “The biggest disease today is not leprosy or tuberculosis, but rather the feeling of being unwanted”.
Samas pur District “This is the law of the plague of leprosy in a garment of woollen or linen, either in the warp, or woof, or anything of skins, to
pronounce it clean, or to pronounce it unclean.” Leprosy is one of the oldest diseases known to humankind. It is also known as
Hansen’s disease, named a er Norwegian physician, Gerhard Henrik Armauer Hansen, who debunked the prevailing no on of
the me that leprosy was a hereditary disease. He showed that the disease had a bacterial cause instead. For thousands of
years, people with leprosy have been s gma sed and considered to be at the extreme margins of the society. The aim of An ‐
Leprosy Day is to change this a tude and increase public awareness of the fact that leprosy can now be easily prevented and
cured.
The date for An ‐Leprosy Day was chosen to coincide with the anniversary of Indian freedom fighter, Mahatma Gandhi’s
assassina on on January 30, 1948. During his life me, Mahatma Gandhi worked relessly towards the be erment of people
afflicted with leprosy. A series of ac vi es was conducted with close coordina on of District Health Society and LEPRA Society
Samas pur. The walk for leprosy began from the premises of District Hospital and was flagged off by Dr Sheonath Sharan,
Communicable Disease Officer, Samas pur, in which more than 150 school students, teachers, 40 government general health
care, NLEP staff par cipated. The main objec ve was to advocate early case detec on, early treatment for disability preven on
and reduc on of social s gma and discrimina on. LEPRA Society project team and NLEP staff led the rally. The walk covered
around four kms and passed through Stadium road, Court road, Kashipur road, Sonbarsa Road and ended at District hospital
Samas pur. The rally was addressed by the Communicable Disease Officer, District Health official and Lepra project team. The
school quiz and sensi sa on mee ng was also conducted at Primary Health Centre level. The ac vity was well covered by
print media and electronic media.
Patna District The an ‐leprosy fortnight was celebrated at Kustha Colony, Ramnagar and Premnagar, Khagoul, Patna on January 31. The
ac vity was organised by LEPRA Society, Patna team including lokdoot with support of Believers church and local community
stakeholders. Sixty‐one persons affected by leprosy (44 male and 17 female) par cipated in the self‐care training. They were
demonstrated home‐based care for healing of ulcer and disability management. The hydrotherapy, soaking, scraping and oiling
was discussed in detail. The mee ng was addressed by Ward member and sister of Believers Church. They explained about
importance of sanita on and hygiene in normal life. Sixty per cent disease could be prevented through the maintaining of
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personal hygiene. They discussed about Parwaris scheme and Bihar Shatabdi Kustha Kalyan Yojana. They were provided the self
‐care kit and grade II footwear among leprosy affected persons.
Sparsh, Dhanbad On January 30, a rally on World Leprosy day was observed by SPARSH,
Jamadoba. Sanjay Singh (GM, Jharia Division) started the rally by waving
the flag from his office premises. The purpose was to create awareness
about leprosy and removal of s gma in society. Sanjay Singh briefed the
audience regarding efforts of TATA Steel and LEPRA Society in
elimina on of leprosy. He also briefed the progress of SPARSH centre in
trea ng and rehabilita ng leprosy pa ents. He also informed that TATA
Steel is establishing reconstruc ve surgery centre to cater the needs of
neighbouring districts. Around 250 school children of Royal High School,
Jorapokhar with banners and slogan par cipated in the rally. The rally
started from GM Office, Jamadoba to TATA Central Hospital via
Ramjanpur and Alamnagar. The rally ended at TATA Central Hospital
where the technical staff briefed children regarding leprosy, sign,
symptoms of leprosy and its course of treatment.
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Excerpts from an hour‐long BBC 3 countries programme commemora ng World Leprosy Day As part of World Leprosy Day observance BBC three countries had an hour’s programme which featured interviews by Anchor
Louisa Peacock with Suresh of The Leprosy Mission, Sarah Nancollas, Chief Execu ve, Lepra UK, Madhavi Sakuru, Programmes
Officer Lepra UK, Ashim Chowla, CE, LEPRA Society and Prof. Diana Lockwood, Leprologist, LSHTM.
The interviews essen ally revolved around leprosy, its causes and treatment and the s gma associated with it. Some personal
examples as well as some general ones lent credence to the discussion on leprosy.
While the anchor said the disease is more of a Biblical one Sarah men oned there are 215,000 new cases every year; four
million people living with the consequences of leprosy worldwide. Three million cases not yet found. Replying to the anchor’s
ques on on how the disease starts and spread Sarah delineated the whole process from how it begins from a discoloured patch
which turns anaesthe c and how the slow damage is done to the body. She also men oned people are 95 per cent immune
from the disease and those who have BCG as a child protects them be er against leprosy than TB. ‘You have to live in close
proximity to someone with leprosy for a long period really to have any exposure to it,’ said Sarah replying to the anchor who
asked if we can get leprosy! Poverty is linked to leprosy. A crucial point raised by Sarah poverty linked to leprosy is ‘s gmas and
supers ons s ll exist even if the person is cured. We (Lepra) are figh ng to combat them.’
Madhavi explained what a leprosy colony is and how people are outcast from the family when they get the disease. “Children
are not aware of implica ons of leprosy. They are also shunned by peers and teachers when disability sets in. People don’t
want to be iden fied that they have got leprosy. That ruins chances of anything in life – marriage, educa on. Prejudice and
s gma is more steeped in educated classes in India. Huge socio‐cultural change needs to happen. Quality of life varies for
people affected by leprosy. There are few and far interven ons.” stated Madhavi. Replying to ques on on what the State is
doing to change the life of people living with leprosy she Madhavi said “We are trying to get these people land ownership so
that they don’t get evicted.”
Madhavi added “the young don’t want to live in leprosy colony. They are struggling as they don’t want their iden ty to be
mixed up with their parents as they don’t have leprosy and they s ll carry the baggage of leprosy. They want to get jobs.”
Sarah felt a mul ‐faceted approach is needed to tackle s gma – educate in the communi es about s gma, approach
government so that people can access services, help them get over self‐s gma. Even for young people living in the colonies
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there are issues. Parents want them to leave. They don’t want to be associated with the colony but the problem is that parents
lose touch with their children.
Ashim underscored that LEPRA works to make leprosy a disease of no consequence. Efforts are made to eradicate s gma and
leprosy. Replying to the anchor’s ques on on why is the s gma so strong despite treatment he says: “there was no cure in India
ll the early 80s. Leprosy was an incurable disease that manifests in gross deformi es. People were scared and it has always
been a mystery disease – on why it happens, how it is transmi ed and has no cure. Not having a cure ll early 80s means the
s gma is always imagined. At the societal level s gma is very strong and is not going to go away, just through a campaign. It
requires poli cal will and poli cal commitment.”
When the anchor asked Ashim if he would ask the government to help what would it be Ashim replied: “India has to stop being
embarrassed about things – be it malnourishment or leprosy. As Amartya Sen said recently it would be a miracle if India was to
turn itself into a super power with an unhealthy and uneducated popula on. I don’t think that’s ever been done before. We
have brushed these problems under the carpet. And we have to break the silence. This needs to be addressed from the top. At
the present leprosy is at the tail end of the programming. It has to be spoken about.”
On the aspect of change Ashim has seen he replied “over the years the collec ve organisa on of people amongst the leprosy
affected is unique and strong. There is a leadership emerging amongst them.” Ashim illustrated through an example (story
given below) of a couple who fought terrible s gma and rose up the economic ladder to find the s gma diminishing! A couple
in a small village in Odisha was affected by leprosy. Both belong to different communi es. Both met at a reconstruc ve surgery
unit. They fell in love and got married. They came to a village where they suffered horrible s gma. What helped in their case
was that they had love with them. They wanted to live a full life. They were hopeful and they started a small shop. LEPRA
helped to start that ini ally. That business grew bigger and bigger. The couple, then, went to paddy trading taking a loan from
bank and eventually set up a rice mill. Because they have gone up the economic ladder they are recognised poli cally, for the
assets they have. And the s gma has diminished for them.
Ashim also raised a point if film stars can come out and speak it will be a huge impact. He took the examples of Amitabh
Bachchan who said he had TB, which is s gma sed disease and Deepika Padukone who spoke openly about mental depression
which is highly s gma sed.
This special session on leprosy ended with Diana Lockwood who went into the technicali es of the disease.
In the face of adversity true love can be found. This is the story of Ghasiram and Lochhi Khilla, a couple from the state of Odisha
in India. Back in 1993 Ghasiram was living in Podapadar, a small town in the Koraput district. He was 17 years old when he was
diagnosed with leprosy and had begun to feel the effects of the nerve damage.
Some eight hours away, on the other side of the state in the Malkangiri district, Lochhi was experiencing similar symptoms.
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A er being treated for leprosy, she was sent to Lepra’s Muniguda Reconstruc on Centre where she could have some of the
las ng effects of leprosy treated. Miles away from home Lochhi, only in her teens, knew nobody.
It was during this me that she met Ghasiram who had also been sent to the centre. They both understood what it was like to
be a young person living with leprosy. They had endured the physical effects as well as social s gma. This was more so for
Lochhi because, as a woman, o en those who have had leprosy are le unable to marry.
Luckily, Lochhi and Ghasiram were able to find comfort in one another and during their pre‐ and post‐op treatment they fell in
love.
In 1995, when the me came for them to leave the centre, Lochhi and Ghasiram told our staff that they planned to marry. In
the year 2000 they finally did so.
Sixteen years later the couple have had to overcome a lot more than leprosy.
Back in Ghasiram’s village of Podapadar, a er marrying, together they faced the social s gma and were shunned by society.
Although they no longer had leprosy, the misconcep ons people have about the disease meant they were s ll treated as if they
were contagious or even cursed. To try and rebuild their lives, Ghasarim and Lochhi set up a small business using a start‐up
grant from our Koralep Project. While turning out to be a financial blessing, the business helped them in many more ways...
It grew very quickly and even enabled the couple to eventually buy a rice and flour mill. As their business grew over the years,
so did their social standing. As they became prominent business figures in the community, slowly the s gma surrounding
them lessened.
“Lepra has given a new life to us, given us workable hands and feet. With the help from Lepra, we could marry and now we are
in the society with manageable financial status. Thanks to Lepra as they made us stand in the society without s gma. We are
leading a happy family life with good understanding amongst us.”
The couple con nue to live in Podapadar happy, healthy and running their successful business. A Lepra love story.
Published in Lepra Facebook ‐ 14 February, 2016
Andhra Pradesh and Telangana The Healing Environment A healing environment is necessary for tackling and curing any disorder/ailment. If this environment is soothing to the eye and
cheery then it does have a posi ve impact on the health of the man, women and par cularly the children. If the surroundings
are filled with vibrant hues then the children are bound to react to this colourful pale e. This will have an effect on their
emo ons, health and their general wellbeing. It is important to ensure such a favourable atmosphere for the children,
especially in the anganwadis where they will be happy, healthy and at the same me be educated too. LEPRA Society, through
its Model Anganwadi Project, wants to create such a beneficial atmosphere in the four anganwadis it has priori sed for its
interven ons as well as strengthened the role of the community.
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Health status of the people living in urban slum areas s ll remains the same, with not many changes seen in the health‐seeking
behaviour and the delivery of health services to the most marginalised and the vulnerable. Inadequate health infrastructure –
par cularly the UHC (Urban Health Centre) network – is only a part of the problem. U lisa on of the exis ng health care
facili es is below op mal.
Absence of sanita on facili es in slums has more nega ve impact in the health of the urban poor, especially women and girl‐
children. Poverty, the root cause of all social evils, is also the cause of this problem in the urban slums of this area.
LEPRA seeks to ini ate certain health development programmes in its opera onal areas in the slums. It seeks to implement a
public health and sanita on programme in difficult to access slums. LEPRA Society will implement proposed Health
Interven ons programmes in the slums at Balanagar Mandal Primary Health Centre Hyderabad. The Centre has covering 5,
67,883 popula on, 13 sub‐centres, 65 slums, 94 Anganwadi Centres and 37 ASHAS. The Child Development Project Officer
(CDPO) says that most of the centres are in the slum areas and the a endance of the children also is very less. Among 94
Anganwadi centres, LEPRA has priori sed four centres for the interven ons. The proposed project is planning to develop model
Anganwadi Centres in four slums at Balanagar, Hyderabad to focus on early child development, women’s health and to
strengthen the community on communicable diseases.
Generally most hospitals, clinics, laboratories or anganwadis are invariably gloomy and grey given the fact that they are
basically diagnos c and treatment centres. These dull environments may even deepen depression or worsen the moods of
pa ents and others who come here. A bright colourful milieu peps up a person or a child. Colour is indeed a therapy as various
colours are associated with different feelings, emo ons. It does a world of good to brighten up environments par cularly the
anganwadis. As a LEPRA Trustee Fiona Duby (who visited India and Bangladesh recently) said… The centre is not only a healing
environment but also a learning one. A growing body of research shows that decora ng hospitals with artwork can speed up a
pa ent's healing process. More could be done to enhance the environment for these long‐stay pa ents such as ge ng pa ents
to make murals or using the services of a rickshaw ar st or similar to create the images suggested by pa ents. (Doing these on
board or metal sheet avoids the problem of peeling paint on the walls and they can also be moved around). Images can also be
educa onal.”
An example shown here is a paediatric nutri on rehabilita on ward (in Dhaka, Bangladesh) where colourful artwork is provided
to help s mulate children who are apathe c. Even the ceiling has images.
It is well known that the Integrated Child Development Scheme was launched in 1975 with the following objec ves:
1. Improve the nutri onal and health status of children in the age‐group 0‐6 years;
2. Lay the founda on for proper psychological, physical and social development of the child;
3. Reduce the incidence of mortality, morbidity, malnutri on and school dropouts;
4. Achieve co‐ordina on of policy and implementa on amongst the various departments
5. Enhance the capability of mothers to take care of child’s normal health and nutri onal needs
The above objec ves are sought to be achieved through a package of services consis ng of supplementary nutri on,
immunisa on, health check‐up, referrals, pre‐school non‐formal educa on and nutri on and health educa on. The target
people are pregnant women and nursing mothers, non‐formal pre‐school educa on to children (3‐6 years), nutri on and health
educa on to women between the age group of 15‐45 years. While it is significantly clear that the need for adequate basic
service provisions is a must for the neglected and weaker sec ons of our society (slum dwellers) the delivery of basic services to
the same con nues to be ignored.
All the services provided by the ICDS converge at Anganawadi Centres (AWCs). Pre‐school non‐formal educa on for children in
the age group of 3 to 6 years is imparted in the AWC. Hence, the AWC is the most important component of the ICDS scheme.
The AWC makes significant contribu on to early child development and women’s health.
The strengthening of four AWCs at SriSrinagar, Harijanbasthy, Pi alabasthy and K S Nagar in Balanagar Mandal is being done
along with refurbishment work, wall pain ngs, supply of play and educa onal materials.
Crea on of a nice and merry environment will go a long way in helping a child stay happy.
LEPRA Society – Akzo Nobel is implemen ng ac vi es to develop Model Anganwadi Centres and strengthening community health in four such
Anganwadi Centres at Balanagar, Hyderabad. Two Anganwadi centres were inaugurated at Sanjeevaiah colony and Balanagar, Hyderabad.
Laxmibai, CDPO, thanked AkzoNobel and LEPRA Society in ini a ng and coming forward to develop Model Anganwadi Centres and provide
teaching environment for children. Saurabh Gupta from Akzo Nobel stressed the need for nutri ous food supplements and hygienic
environment for the poor children. He also men oned that Akzo Nobel will adopt some more anganwadi centres and develop them into
Model Anganwadi Centres in the future. Raja Mallaiah, expressed his happiness and thanked for the support. Swamy Reddy explained about
ac vi es / services of LEPRA Society.
11
Observance ‐ Na onal Girl Child Day Every year Na onal Girl Child Day is observed
on January 24 as a na onal observance day.
It aims to generate awareness among
people to save the girl child, and tells them
the importance of girls in society and
encouraging them to treat girls and boys
equally.
The Model Anganwadi project observed
the event on January 27, 2016. On this
occasion a talk on the importance of girl
child, health and sanita on was delivered
by the resource person. Subsequently,
compe ons, namely slogan wri ng and
poster‐making were held at Zilla Parishad
School, Balanagar for high school girls.
In the event Rajender, Prinicpal Zilla
Parishad School, six school teachers, 72
school girls and four Anganwadi workers
par cipated. Buchan, Field Coordinator, welcomed the par cipants and explained the importance of observance of na onal girl
child day, as well about the event. He introduced Dr. Aruna Bala, Consultant Medical Advisor, Swamy Reddy, Project Officer
from LEPRA Society and Upasana Mishra from Akzo Nobel who par cipated in the programme.
Swamy Reddy shared about LEPRA Society and Akzo Nobel and the ini a ve.
The Project Officer emphasised the importance of girl child and educa ng them. The Medical Advisor expressed the need of
trea ng girls equal with boys. Later, the school Principal expressed his hear elt thanks for choosing their school to conduct
such an important event and for encouraging girls.
A session on importance of health, sanita on and following personal hygiene among adolescent girls was delivered by Medical
Advisor. At the end of the session queries raised by children and teachers were answered by the resource person.
The compe on on slogan wri ng and poster making started and the theme was ‘save girl child’. Thirty‐five school girls
par cipated in the compe on and wrote slogans in Telugu, English and Hindi. At the end of the compe on, three best
slogans and posters were selected to be placed at the Anganwadi Centre, D Sanjeevaiah colony.
The school management was also thanked for giving permission to conduct the event. It was very good to see children
par cipa ng in the compe on and expressing their thoughts, talent in the form of slogans/posters.
Volunteers training programme The SANKALP project, under NTDRU in Andhra Pradesh,
organised a two‐day training programme to selected
volunteers on January 28 and 29 in Social Service Centre,
Vijayawada. Thirty‐three volunteers from three districts
(Krishna, Guntur and Prakasam) a ended the training
programme. The criteria followed for selec ng the
volunteers from villages considered the area, involvement
in community development ac vi es, interest to work and
gender aspects. Eighty five per cent of the volunteers who
a ended were women (28/33), among whom 42% belong
to Self‐Help Groups (12/28) and 39% are ASHAs (11/28).
The volunteers are trained on thema c areas of lympha c
filariasis and leprosy. The informa on on basics like signs
and symptoms, preven on, management and control
aspects are dealt in the two‐day session. They were made to
understand about the SANKALP project and expected results by the end of three years. The par cipatory methods were
12
followed to ensure ac ve par cipa on from the par cipants. The MER (Manager, Evaluator and Reporter) Teams were formed
to keep the training on track. The role of volunteers and their job descrip ons in SANKALP was worked out and shared. A group
exercise was done on who is volunteer, where it depicted the opinion of the par cipants on the concept of “VOLUNTEER”. The
training curriculum, session contents were translated into local language. The person affected with filaria shared her experience
while dealing with the psychological, health, social and economic problems in the session. It was found that there was 40%
increased knowledge levels among the par cipants in pre (39%) and post‐test results (79%). At the end, their involvement in
the An ‐Leprosy Fortnight Observance was explained. The formats were shared for capturing the data from field. The feedback
session led by the State Coordinator helped the facilitators to understand the gaps while dealing with the training sessions and
to follow the sugges ons in upcoming training.
Case Study Lack of proper treatment has detrimental impact Twelve‐year‐old Durga Prasad, son of Kondababu, is
studying in class VII. His family (father, mother and
one younger sister) came from Kakinada to
Ameerpet, Hyderabad three years back. His father is
a security person in a private company, mother
works as a maid and sister is studying in class V.
His mother observed Durga Prasad having skin
lesions on face and hands two years back. They
approached a local doctor who said it is a general
skin problem and prescribed general medicines and
ointment. But the skin lesions remained and in fact
increased in size. They went to Gandhi Hospital,
Secunderabad to consult a doctor (skin department)
and the doctor diagnosed it as Leprosy and provided
MDT for one month. A er three months of treatment
Durga Prasad went to his na ve village where he
developed fever and discon nued the MDT. There was no follow‐up of his treatment (MDT) by the NLEP staff or the parents.
Durga Prasad is going to school regularly and he observed one year back he was unable to hold the pen to write, unable to take
food properly and had difficulty in picking up small objects with the right hand. Slowly Durga Prasad developed weakness and
claw of four fingers in his right hand. His parents were worried and his mother enquired in the house, where she is working as a
maid. They referred him to the Private Doctor; he treated for one month and referred to NGO Neerikshana for further
medica on. At Neerikshana they started MDT again and referred Durga Prasad to NLRC Nallakunta for Nerve Func on Test,
Physiotherapy and treatment for neuri s.
Now Durga Prasad is taking MDT and steroids and regularly doing exercises for the same. His disease progressed without
proper treatment. It may be because of lack of proper counselling, educa on on disease and importance of regular treatment.
There is no proper follow‐up during these days for leprosy affected.
Odisha Sankalp ‐ Induc on training To understand the Sankalp Project, a four‐day induc on training was organised at CYSD training Hall for the project staff from
January 13 to 16, 2016. The training began with a warm welcome by Project Manager followed by a mo va onal song sung by
all the 18 par cipants. The four‐day training programme included five technical sessions. The first day session started with the
session on Gender by Director‐ Regional Office Bhubaneswar. In the post‐lunch session there was one on community
mobilisa on by Basant Mohanty, Development Consultant. The sessions on the second day included a Physiotherapy session by
Biswajit Satpathy Physiotherapist, Sankalp Project and a demonstra on of self‐care prac ces and exercises for the people
affected with LF and leprosy. There were technical sessions on leprosy on the last two days by Dr. S.N. Pa , NLEP Consultant
and Lympha c Filariasis by Dr. G.B. Acharya, MC‐ Sankalp Project and Leadership sessions was taken up by Dr. Mitali Mohanty,
13
PM, Sankalp Project. The pre‐and‐ post‐session evalua on test was done in order to know the understanding level of the
par cipants and the mee ng ended with a vote of thanks.
Self Support Group Forma on Forma on of self‐support‐group is a community level ini a ve to solve and address the LF and leprosy‐related issues. As per
the planning, self‐support groups were formed in five gram panchayats of Gop block by taking ASHA representa ves and
peoples affected with LF and leprosy. The total
number of par cipants for the mee ngs was 67, out
of which there were 15 ASHAs, two AWWs, 46
lympha c filariasis affected persons and four
leprosy healed persons.
These groups were sensi sed on the two diseases
and they will act as the peer group to take care of
their own as well as to mo vate others in the
community for daily self‐care prac ces. During the
group discussion it was no ced that the people who
are prac cing daily self‐care, are ge ng its benefits
like reduc on of swelling in the affected legs, no
acute a acks and healing of entry lesions. Further,
the ac ve members in the groups have mo vated
other community people to prac ce self‐care in
order to get the benefits with proper management.
Vihaan project ‐ Life takes a U‐turn Down the ages barbers are considered to be whispering opinion makers. On the other hand, if brother turned enemy, than
there cannot be any respite as seen in case of the mythological Ravan. It holds true even today. Kaustauva (fic ous name) had
two elder brothers. The eldest though had a house in the village, lives in the town leaving the en re property in the custody of
the younger brother. Kaustauva and his elder brother live in the village with their nuclear families. Both of them are barbers by
profession and have two saloons in the village. They had their earmarked customers. The village is located in a remote place
and adjacent to the Mao infested area. The village has an approachable road and one needs to walk approximate four miles to
reach the village from the bus terminal. Barter system is s ll in opera on in the village. The elder brother was very much
jealous of the younger Kaustauva. He wished Kaustauva to leave the village like the eldest, so that he could have all the
customers and the piece of land belonging to Kaustauva as well.
One day a block official sent the message for opening a bank account for deposit of Madhu Babu Pension Yojana (MBPY), a
state government’s scheme to provide an amount of Rs.300 per month to People Living with HIV(PLHIV). The bearer had certain
enthusiasm regarding the pension. He could know the details of it from the official. It was the first blow for Kaustauva, when
the man disclosed it with his elder brother. Neither the message reached Kaustauva nor did he open the account for credit of
the pension. Conspiracy to drive him out of the village intensified with a greater public cause. The message of Kaustauva’s
posi ve status spread with the speed of fire. The Accredited Social Health Ac vist (ASHA) was used for the purpose. She was
said to have confirmed Kaustauva and his wife’s status from the ICTC, from where they had been sponsored for MBPY.
With this authen ca on, his saloon was locked, no one turned to him. He was ostracised and had tough days. He was
threatened to leave the village. He managed his life however. The Outreach worker (ORW) passed through the village for LFU
tracking. He heard of it, met Kaustauva who was registered in the CSC on 20.01.2015, much a er his detec on on 21.07.2014.
While leaving the village, he interacted with some of the villagers and could know the vengeance of the villagers due to the
s gma sed versions spread around by some of the mischief mongers including his elder brother. They had a plan to lock the
family within and set his house on fire, if at all he does not leave the village and name it as Mao a ack.
On this report, the DRT authorised the Project Director (PD) of the CSC to handle the case carefully. The PD, along with a lady
member of the DRT, visited the village and while the lady visited different houses including the house of Kaustauva, the PD had
his technique of hearsay opinions of the villagers. He managed to convince a group of villagers loyal to the village secretary,
who agreed for holding a sensi sa on mee ng in the village the next day, i.e, on February 5, 2016.
14
The PD along with the ORW visited the
village the next day. The sensi sa on
mee ng started with the Secretary and
his loyal group in the beginning and
other villagers joined the mee ng one
a er another. Soon almost all the
villagers were there in the mee ng. The
routes of transmission was the focus of
discussion. The PD also discussed
regarding the risk of ge ng infected.
Even a er all the informa on shared,
the reluctance among the villagers could
be dis nct. The PD himself asked
Kaustauva to shave him. The secretary
of the village followed and he was
followed by his loyal group and thus
followed the en re village. On the other
hand as pre‐planned, Kaustauva’s wife
served tea to the villagers including the
visitors. No one touched the tea ll the
PD li ed the plas c tea container.
Situa on had a u turn then. Some of them whispered the name of the elder brother who was behind all these developments
for his personal benefit. The villagers re‐accepted Kaustauva and assured to help him to the extent possible. They even assured
to suggest his name for ‘Mo Kudia Yojana’ (Govt scheme for house) in the Pallisabha and other livelihood support.
Bihar and Jharkhand The healing touch Tata Steel endeavours to provide the healing touch, empowers leprosy pa ents and ensures a s gma‐free life
Sunita Kumari, a 16‐year old from Dhanbad district of Jharkhand, was suffering from leprosy. However, due to the un mely
death of her parents and sister, Kumari was le alone to fend for herself. It was when she was brought to the Tata Steel’s
SPARSH Centre in 2012; she underwent two successful reconstruc ve surgeries on her le hand claw. Kumari’s deformi es
were corrected helping her gain full func onal ability. Today, the young girl is self‐sufficient and holds a job in the cloth
manufacturing company in Kolkata and earns Rs.4,000 to Rs.5,000 per month.
Like Kumari, there are millions of people across the country afflicted by leprosy, said to be one of the oldest recorded diseases.
World Leprosy Day is observed interna onally on January 30 to commemorate the death anniversary of Mahatma Gandhi, who
empathised with those afflicted by the disease. Though India is running one of the largest leprosy eradica on programmes in
the world, the major problem lies with the s gma that is associated with the disease. People afflicted by leprosy tend to be
ostracised by society.
Tata Steel has commi ed itself to make a valuable contribu on to the lives of the people. Healthcare is one of the key areas
where the company is conduc ng some significant and impac ul ini a ves, for people located in the areas of its opera on. In
line with this, the company has set‐up SPARSH ‐ The Healing Touch, a joint ini a ve of Tata Steel Rural Development Society
(TSRDS) and LEPRA Society, an interna onal NGO, which caters to the needs of people afflicted by leprosy. Established in 2009
in Jharia in the state of Jharkhand, SPARSH provides specialised healthcare services, thereby improving the quality of life of
people and empowering them to be self‐dependent. SPARSH was instrumental in successfully trea ng close to 8000 leprosy
pa ents. The sole aim is to improve the quality of life of people, par cularly those having disabili es, by improving their health.
SPARSH’s objec ve is to reduce the s gma associated with the diseases, develop the skills needed to manage their own by self‐
care prac ces, train general health staff and community stakeholders, increase suspect cases and their referrals, enhance
services by the health system through advocacy and liaising and effect convergence with government programme. Pa ents are
provided with facili es such as Out‐Pa ent Department (OPD) Services, physiotherapy management of Neuri s & Reac on,
morbidity care management, self‐care techniques, protec ve footwear, slit skin smear, referral of cases for treatment, follow‐
15
up and training and sensi sa on. It’s not just treatment and facility; there is also a constant effort to empower leprosy pa ents
to be self‐efficient by engaging them in ac vi es such as pain ng, handkerchief and doormat making.
Tata Steel’s healing touch is not restricted to its areas of opera on but is spread all across the country. Leprosy pa ents need to
wear unique Micro Cellular rubber footwear as protec ve gear. However, this is not easily available across the country.
SPARSH has distributed 1,837 pairs of protec ve footwear Grade II and 9,226 pairs Grade I footwear in states like Bihar,
Jharkhand, Assam, U arakhand, Delhi and U ar Pradesh. Though leprosy, which is a chronic infec on can affect anyone, those
at the grassroot level affected by the disease need suppor ve medical interven ons. Tata Steel’s SPARSH endeavours to do just
that. These pa ents also need help with other deformi es that could be caused due to their condi on, for example, blindness.
Unwillingness of the physicians/ophthalmologists and ophthalmic paramedics of general healthcare system to examine leprosy
affected persons, they were not having access to eye‐care services. Thus, under the Mahanadi Netra Chikitsalaya (LMEH),
LEPRA Society ini ated primary eye‐care ac vi es as one of the disability management components in all its leprosy projects.
Correc on of Lagophthalmos (incomplete or defec ve closure of eye) among leprosy‐affected persons by facilita ng
reconstruc ve surgery was also the other eye care interven on of LEPRA.
In the 21st century depriving people of healthcare facili es is not the way forward. India is a progressive na on and its people
also need to have an open mind towards diseases like leprosy. While Tata Steel will con nue to lend a healing touch and
helping hand to those affected by this disease, it’s me society moves on from unnecessary s gma sa on of the illness due to
the ignorance of a few.
Things You Should Know…. Treated but not cured Ten years a er India declared itself leprosy free, drug resistant strains emerge. The environment facilitates the
spread of the disease.
In December 2005, the Indian government declared it had fewer than one case of leprosy per 10,000 people. This announcement of
elimina on, as defined by the World Health Organiza on (WHO), brought relief to a country known to have the highest burden of the
disease. But the sense of relief is disappearing fast.
Since 2009, the incidence of new cases has remained almost constant (see ‘Tricky to eliminate’,). In fact, new cases are being detected
at nearly the same rate at which pa ents are ge ng cured, says KiranKatoch, former director of the Na onal Jalma Ins tute of
Leprosy and Other Mycobac‐terial Diseases in Agra.
In 2013‐14 alone, 127,000 new leprosy cases were reported from across the country, making India home to 78 per cent of the new
cases detected worldwide. That year, 433 treated pa ents relapsed into the disease.
Worse, since 2014, India has joined the growing list of countries, including Brazil and China, where leprosy can no longer be treated by
the conven onal mul ‐drug therapy (MDT)—a
specific combina on of three pills which takes from
six months to a year to kill the leprosy‐causing
germ, Mycobacterium leprae, and has helped
countries significantly reduce the disease burden
since its introduc on in 1982.
What’s worrying is that new pa ents are now
showing resistance to MDT, whereas drug
resistance is usually experienced by those who
discon nue the treatment.
Consider the case of Shahla (name changed to
protect iden ty). The 24‐year‐old lives in a slum
near Delhi’s Vijay Nagar area along with her family
of eight. She says no one in her family or friends
had ever contracted leprosy. So in 2007, when she
developed skin lesions, she ignored it. The disease
remained undiagnosed for two years ll she
developed numbness in the affected area,
16
indica ng peripheral nerve damage. Doctors treated her with MDT and declared her cured by early 2014. But within six months, she
developed erythema nodosumleprosum (ENL) lesions, a complica on of leprosy that can result in deformity. Subsequent blood tests
showed that Shahla is resistant to MDT. Doctors at the Delhi hospital of The Leprosy Mission (TLM), an interna onal charitable
organisa on, are now trea ng her with the second‐line of treatment. They say Shahla will take another two years to be cured.
So far, the long delay between the onset and detec on of leprosy had been a major obstacle to “elimina ng” the disease. It usually
takes five to 10 years before the symptoms show up. Now, with the emergence of drug‐resistant strain of M leprae, its elimina on
will become further difficult, says Jalaz Rahmi, Medical Officer at TLM Hospital, Delhi. Diagnosis of the drug‐resistant type of leprosy is
me‐consuming. Besides, the second‐line an ‐leprosy drugs are not available easily and for free.
More than 13 per cent of the new cases and 44 per cent of the relapsed cases are showing resistance to rifampicin, one of the three
drugs of MDT, say researchers with Stanley Browne Laboratory in Delhi, a centre of WHO for the surveillance of drug resistance in
leprosy. The researchers arrived at the conclusion a er diagnosing 215 new and 16 relapsed cases visi ng the TLM Hospital, Delhi,
between 2009 and 2014. The study was published in Clinical Microbiology and Infec on in November 2015. “Rising cases of drug
resistance since 2014, par cularly among new pa ents, shows that resistant strains are ac vely circula ng in India,” says Mallika
Lavania, researcher with Stanley Browne Laboratory.
The bacterium is also being transmi ed con nuously. This is evident from the fact that children, who rarely suffered from leprosy
given the long incuba on period of M leprae, now account for a significant
percentage of the newly reported cases. In several states, according to the
Progress Report of the Na onal Leprosy Eradica on Progra‐mme (NLEP),
2014‐15, children account for over 10 per cent of the new leprosy cases; in
Lakshadweep the propor on is 75 per cent.
So far, M leprae is believed to be transmi ed through the discharge of
droplets from the nose and mouth of an infected person. Prolonged
contact and an over‐crowded environment increases the risk. But recent
evidence suggests that environment could also be responsible for
spreading the bacteria, both resistant and non‐resistant.
It is in the environment
To understand the mode of transmission of the bacteria, in 2011
researchers with Stanley Browne Laboratory in Delhi tested soil samples
from leprosy endemic areas of Purulia district in West Bengal for the
Rising cases of drug‐resistance since 2014, par cularly among new
presence of M leprae. They collected 207 soil samples from bathing and
pa ents, shows that resistant strains are ac vely circula ng in
washing areas around houses, common si ng places, community ponds
India",
and areas around borewells. They found DNA of M leprae in 71 of the 207
Mallika Lavania,
samples. The bacteria DNA was present in 27 per cent of the 82 samples
Researcher, Stanley Browne Laboratory, Delhi
collected from the houses of infected leprosy pa ents, and in 39 per cent
of the samples collected from areas near washing and bathing places, notes the study published in Infec on, Gene cs and Evolu on
in November 2011. The presence of M laprae in soil could lead to indirect infec on, the study suggests.
The environment also acts as the reservoir of several other Mycobacterium species, which make people suscep ble to leprosy. One
such species is M gilvum. The Stanley Browne Laboratory researchers stumbled upon this rare species in 2014, while studying the
transmission of M leprae in the popula on of an endemic village in Purulia. They isolated the species from the accumulated water in
the drain connected to the bathing place of leprosy pa ents in the village. Previous studies had shown that M gilvum can grow rapidly
and is resistant to an bio cs meant for several life‐threatening diseases. Though there is no direct associa on of this bacterium
species with leprosy, M gilvum belongs to the group of M vaccae, which suppresses the immune system of the host and increases
suscep bility to leprosy, note the research paper, published in the Interna onal Journal of Mycobacteriology in October 2014.
Between 2011 and 2014, the village with a popula on of 1,600 had reported 66 new leprosy cases.
“Unfortunately, since 2005 we no longer have facili es to document new cases of leprosy or to know if a pa ent has relapsed or
developed drug‐resistance,” says Sunil Dogra, addi onal professor of dermatology at the Postgraduate Ins tute of Medical Research,
Chandigarh.
A er the declara on that India has eliminated leprosy, India stopped receiving funds from WHO, the World Bank and the
Interna onal Federa on of An Leprosy Associa ons (ILEP); other diseases also took priority in public‐health circles. As a result, door‐
to‐door visits by leprosy control units in remote villages were called off, and medical staff were reassigned. Now that people have to
report about leprosy on a voluntary basis, new cases remain under‐reported. While WHO supplies MDT medicines free of cost, the
Union government provides health care and pension to the affected people.
17
Today, leprosy is part of the general health services, says Katoch.
“But in the absence of training, new doctors and health workers do
not have the adequate exper se to diagnose leprosy.”
Discon nua on of NLEP is also making it difficult for treated pa ents
to avail regular care. Gyanendra Singh from Hasanpur Kala village in
U ar Pradesh’s Meerut district has to travel to Delhi at least twice a
year for cleaning of wounds and bandage as there is no leprosy clinic
nearby his village. “Every me I visit Delhi, I end up spending
Rs.1,000. All I receive from the government is Rs 300 as monthly
pension,” says Singh.
An analysis by researchers with the London School of Hygiene and
Tropical Medicine, UK, and the Leprosy Mission Trust, India, shows
that 27 per cent of the leprosy pa ents in rural areas of Purulia
spend Rs 1,543 a month on treatment. About 53 per cent of
leprosy pa ents suffering from ENL spend 30 per cent of their
monthly household income on treatment. The study was published
in PLoS Neglected Tropical Diseases in January 2015.
Dangers in post‐elimina on era"Post‐2005, we no longer have facili es to
document new cases of leprosy or to know if a pa ent has relapsed or
developed drug resistance"
Sunil Dogra, professor of dermatology,
Post‐graduate Ins tute of Medical Research, Chandigarh
Source :h p://www.downtoearth.org.in/news/treated‐but‐not‐cured‐52039
Obituary We regret to inform you that Dasareddy Jagannadha Naidu, passed away, January
27, 2016 at age of 84. A man of Gandhian Ideology and dedicated in the field of
leprosy, Naidu served for many years as leprosy social worker and reached millions
of leprosy people through many organisa ons.
Jagannadha Naidu, affec onately known to colleagues and people as ‘naidubabu’,
was born on February 10, 1933 in Pedapeta village, Srikakulam district, Andhra
Pradesh. He earned his economics degree from Maharaja College of Arts,
Viziangaram; and obtained leprosy social worker training from Gandhi Memorial
Leprosy Founda on in 1960. He started as leprosy volunteer in his own village
(1961 to 1963) and con nued his leprosy service in DANISH centre, Pogiri, Orissa
(1963‐1972), Premasamajam, Visakhapatnam and as project Officer in LEPRA India
(1989‐2001). Over a remarkable 40‐year service in leprosy eradica on programme,
as recogni on, he was invited by LEPRA UK where he was felicitated.
He had transformed BOLEP into a beau ful green mango garden, which was a dry
land in the beginning of the project work. He made slogan “LET TREES GROW AND
GET LEPROSY GO” and it is proved there.
May Naidu’s soul rest in peace!
Plot No.:17, Krishnapuri Colony, West Marredpally, Secunderabad—500 026, Telangana, India Tel No.: +91 (40) 44586060; Fax : +91 (40) 27801391; Email : info@leprahealthinac on.in ; h p://www.leprasociety.org 18