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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*

 

UP

India

2006

528

995

2007

645

684

2008

537

774

2009

556

677

2010

494

694

2011

488*/647**

926

                                                  * 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.”™