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[2007- ] Survey on
Disability and Rehabilitation of the victims of Japanese Encephalitis in Eastern
Uttar Pradesh
Problem Scenario
Japanese
Encephalitis (JE) is a killer disease. Japanese encephalitis (JE) remains
the most important cause of Acute Viral Encephalitis (AES). It has been
widely found through-out the world, especially in the Indian sub-continent
and South East Asia, Japan, China, Korea, Taiwan etc. It continues to spread to hitherto
unaffected regions like Indonesia, Pakistan and Australia. Approximately
60% of the world population inhabits JE endemic areas. In India, it is
widely spread in most major states Viz. Uttar Pradesh (U.P.), Bihar, Andhra
Pradesh, Tamil Nadu, Kerala etc. It came to Purvanchal, i.e., the eastern
rice belt of U.P., touching the Nepal and Bihar borders in 1975. It was
noticed predominantly in 1978 and since then it has taken more than fifteen
thousand lives and severely affected more than a Lakh Eighty Thousand (>180,000) people. Purvanchal in
Uttar Pradesh-the rice belt was badly affected with JE for the past 34 years
but things at the ground level have not much changed even now. From 1978 to
2011 in 34 years the U.P.state has seen 19 chief ministers and 9 Governors
and almost all the political parties have ruled, but, so far JE victims is
concerned, the crisis is still the same. In the affected area, even the
basic infrastructure has not been built-up and the health services are not
up to the marks. More and more cases of mortality and morbidity still
reported years after years.
Despite its restricted range mostly in the
developing countries, world-wide a high annual incidence of 50,000 cases
and about 10,000 deaths has been reported. In Purvanchal alone it has cost
over 15,000 lives and has affected more than 180,000 people in the past 34
years in this belt alone. On national level, as per data published by NRHM
about 1000 cases of JE/AES are annually reported from through-out India and
U.P.’ s share is more than 500. Over 80% of the cases of JE (now added with
AE also) have been reported from eastern part of the U.P. alone. It is an
apt example of neglect, indifference, ignorance. In the season 2011, for
the first time half a dozen cases have been reported from U.P.’s
state-capital: Lucknow and 5 confirmed cases from national capital: New
Delhi area and Till end of December 2011, 647 deaths in Purvanchal were
reported by media. Seventeen blood samples collected from New Delhi’s
various pig slaughter houses were found to be positive out of 81 samples
total collected.
Table
1: Encephalitis: The Dance of Death*
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UP
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India
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2006
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528
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995
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2007
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645
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684
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2008
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537
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774
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2009
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556
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677
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2010
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494
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694
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2011
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488*/647**
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926
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* Till Oct 24, 2011; Source: NRHM
** Till end of December 2011, 647 deaths in Purvanchal were reported
by media.
Disease
can be fatal in 25% cases. Magnitude of the problem is even more alarming
since the survivors are left with serious long-term neuropsychiatric
sequels. Almost every two to three
years, epidemics of JE occur in Indian subcontinent with a higher
mortality, and in about 10 years, it gives a peak of more than 2000 deaths.
With adequate medical and other infrastructure, the rates of both death and
morbidity can be substantially reduced, as was successfully done in Japan
and other countries.
APPL Efforts
APPL
is the first and only organization which has been constantly monitoring the
status of victims of Japanese Encephalitis (JE) / A.E.S. in the Purvanchal
part of eastern Uttar Pradesh on scientific lines. It has generated
verifiable data about the victims during and after the treatment, and
published 4 reports (in 2007, 2008, 2010 and 2011) till date. This work has
been appreciated by all stake holders and featured prominently in media.
2011
Study
The
current report is the follow-up of earlier studies and fourth one based on
our studies/findings for the season 2011.The objective of the current
studies was to find out the current status and changes observed in the last
5 years or so with respect to almost all aspects of our earlier studies, on
the ground level. It has broken many myths about the effect of proximity to
water bodies, animals, role of effective nutrition, safe drinking water,
etc. In the current study, APPL has been monitoring the target section of the
200 victims in three selected blocks of Gorakhpur District and 50 selected
households in each selected block for the period of past four months. A
well informed, motivated and equipped expert-team of APPL was involved in
the studies who have very meticulously & scientifically designed the
various parameters, scanned each and every aspect to arrive at the Ground
realities. A comprehensive schedule has been filled to collect the primary
information regarding present scenario in the vulnerable areas. The detailed
investigation and information collected from various sources are the ground
for APPL’s report and recommendations, published on December 29, 2011 at
Gorakhpur (U.P., India).
Please
find the presentation
and report
published herewith.
Previous Studies (2007, 2008 and 2010)
2007 Survey Objective
The
objective of this study is to investigate about conditions, facts and
ground realities of the JE disabled in PURVANCHAL in general and in worst
hit three districts of Gorakhpur, Maharajganj and Kushinagar,in particular.
A comprehensive schedule has been filled to collect the primary information
regarding present mental, physical, economical and social status of the
victims. Their surroundings, family atmosphere, the effect of the illness
and disability on their family has been investigated in detail. The
study looks into the accessibility
and quality of medical services during and after the illness in terms of
services rendered, counseling and follow up. It was the motive to find out
the awareness level of the victims, families and the community. The study
also aims to find out the reach and effectiveness of the present
rehabilitation package announced by the Government , how much the rehabilitation package
changed the victims’ life and what is still needed to be done? This study
has an important objective not to
point-out who was at wrong, but to highlight what was wrong and specially
to focus on the needs of the disabled , the ground realities , the loop
holes in the existing health system and the rehabilitation policy of the
Govt. It also includes to share the
findings with the organizations working on the issue as well as with the
concerned deptts. of the central and state govts. APPL also plans to adopt
some of the worst affected cases and support them for their total revival.
Reports
1.
Survey report
2.
A presentation about
the report made in April 2007 to select decision makers
Impact
The
results of the study was well received by representatives of the local government
and local health experts. It was also prominently featured in the media.
Here are some excerpts of the news item:
·
In India
Today (a prominent weekly Indian magazine – Hindi issue), March 2007. Page 1, Page 2.
2008 Study
APPL
made the second (additional) study, as follow-up in the year 2008-2009, on
the subject and the results were shared with concerned people during a
meeting entitled: “Challenges, Opportunities & Developing new tools to
fight Disability in children in Eastern U.P due to Poverty, Illiteracy,
Malnutrition with special emphasis on Japanese Encephalitis”’ on November
21,2008 at Gorakhpur(U.P.). The main
aim of the study was to evaluate the efficacy and scope of
government’s various initiatives at ground level in the most affected
region , of the effects of higher level of pollutants in drinking water due
to excess use of chemical fertilizers, changed food habits and Nutrition
values of various cereals consumed currently and in past (about 3 decades-
since the JE disease is prevalent in eastern U.P.), to evaluate the
efficacy and scope of government’s various initiatives in form of
vaccination, fogging, supply of mosquito-nets etc, major obstacles faced by
the victims in identification, characterization, decision making for
transportation to available medical facilities, treatment, rehabilitation,
role of water bodies, animals/pets, nutrition, safe drinking water,
socio-economic background of victims etc.
Please
find the minutes
of the meeting, photos
and the presentation
made.
2010 Study
APPL
has made the third (additional) studies, as further follow-up in the year
2009-2010, on the subject and the results were shared with concerned people
during a meeting entitled: ’A Qualitative Study On The Status Of JE/AES
Victims’ on December 28,2010 at Gorakhpur(U.P.).The aim of the study was to
evaluate the efficacy and scope of government’s various initiatives at
ground level in the most affected region of areas comprising the districts
under the Gorakhpur and Basti
commissionary (s), major obstacles faced by the victims in
identification, characterization, decision making for transportation to
available medical facilities, treatment, rehabilitation, role of water
bodies, animals/pets, nutrition, safe drinking water, socio-economic
background of victims etc.
Please find
the minutes
of the meeting, video
clippet and the presentation
(“Living on the Edge”).
Why APPL?
“Because
all journeys start with the first step. And not doing anything is approving
the status-quo.”™
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