Socio-economic impact of HIV/AIDS on people living with HIV/AIDS

155 Pages·2012·1.81 MB·English

Socio-Economic impact of HIV/AIDS
on people living with HIV/AIDS
and their families
A study conducted by
Delhi Network of Positive People
Manipur Network of People Living With HIV/AIDS
Network of Maharashtra by People Living With HIV/AIDS and
Positive Women’s Network of South India
With support from
International Labour Office
New Delhi
‘Prevention of HIV/AIDS in the World of Work:
A Tripartite Response’
A project supported by
The U.S. Department of Labor
Copyright © International Labour Organization 2003
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First published 2003
ISBN: 92-2-113677-9
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Tripartite Response’
iii
List of investigators
Delhi Network of Positive People
1. Mr. Naveen Kumar - Project Coordinator for Delhi & Manipur
2. Mr. Thuampi
3. Mr. Henminlun Gangte
4. Mr. Jehovahsiam
5. Mr. Satish Kumar
6. Mr. Carlton D’Souza
Manipur Network of People Living With HIV/AIDS
Imphal
1. Mr. Deepak Singh
2. Mr. Bobby Khumanthem
3. Dr. M.K. Kissinger Maring
4. Mr. Shivananda
5. Mr. N. Ranjeet
6. Mr. Amarjeet Singh
7. Mr. Ratan Singh
8. Mr. T. Mathew
Churachandpur
1. Ms. Chinhoi Kim
2. Ms. Thangi Gangte
3. Mr. Thang Lian Mang
4. Mr. Renga Hmar
5. Mr. Ricky Tombig
Positive Women’s Network of South India (Tamil Nadu)
1. Ms. Kousalya, Asst., Project Coordinator for Tamil Nadu
2. Ms. Lavanya
3. Ms. Mary Julie
iv
4. Ms. Shanthi
5. Ms. Padmaja
6. Ms. David Daisy
7. Ms. Dhanam
8. Ms. Santhandevi
Network of Maharashtra by People Living with HIV/AIDS
1. Mr. Manoj Pardesi, Project Coordinator for Maharashtra and Tamil Nadu
2. Ms. Celina D’Costa
3. Ms. Leena Rane
4. Ms. Ujjwala Deshmukh
5. Ms. Yogita Shikare
6. Ms. Shabana Patel
7. Mr. Dilip Vichare
Technical support for the study was provided by Mr. Ravi Subbiah, ILO and the final data
analyses and report writing was done by Dr. Upma Sharma, Consultant, ILO.
v
Foreword
I am pleased to present this study report on ‘Socio-economic impact of HIV/AIDS
on people living with HIV/AIDS and their fam. iTliheiss ’study is significant as it
was carried out by networks of People Living with HIV/AIDS (PLWHA) in four Indian
states. I would like to compliment the PLWHA networks, particularly their members,
for doing an excellent work. These networks are doing a great service to the
cause of PLWHA by highlighting critical issues and undertaking advocacy at
different levels.
The International Labour Organization (ILO) is a strong supporter of GIPA
(Greater Involvement of People Living with AIDS) and is committed to ensure
effective application of its principles. PLWHA are represented in the Project
Management Team, which takes all policy decisions related to the ILO’s HIV/AIDS
work in India. Secondly, in ILO’s training and advocacy work, there is a
consistent involvement of PLWHA. Interactive sessions with PLWHA have been
found to be most effective by ILO’s constituents and other key partners very
often. The ILO’s HIV/AIDS programme follows a rights-based approach. The
guidelines are given in the ILO code of practice on HIV/AIDS and the world of
work. These principles are directly linked to the technical work supporting the
development of policies and programmes for HIV/AIDS interventions in the world
of work.
I am deeply concerned at the instances of stigma and discrimination highlighted in
this study. The world of work can play a key role in ensuring that the rights of PLWHA
related to employment, non-discrimination, treatment and social security are respected.
While access to affordable treatment is indeed a key issue, perhaps an equally
important, if not greater, need is to provide access to regular income to PLWHA, as
the report clearly indicates the adverse impact of HIV/AIDS on the economic condition
of PLWHA and their families. Another issue causing concern is the reduced expenditure
on children’s education in PLWHA families, and the need for children to take up jobs
to complement existing family incomes. This is an indication that HIV may be
exacerbating child labour in India, as observed in several worst-affected countries.
vi
I thank the networks for their relentless effort in undertaking this study. The ILO is very
pleased with this collaboration. I sincerely hope that its findings will influence policy
initiatives and will be used by various development partners for implementing meaningful
care and support programmes for PLWHAs in India.
Herman van der Laan
Director,
ILO Subregional Office for South Asia &
ILO Representative in India
vii
Acknowledgement
This study was undertaken by the networks of People Living With HIV/AIDS (PLWHA)
to understand the socio-economic impact of HIV/AIDS on infected persons and their
families, particularly on women and children. Reaching out to PLWHA and getting
them to talk about what they had gone through or how they were coping with their
HIV status was not easy. It required investigators who would be extremely sensitive
and empathize with their subjects. Therefore, our sincere thanks are due to the four
PLWHA networks, which collaborated with ILO and undertook the survey in their
respective states.
All the members of the networks played a very important role. We acknowledge their
contributions, as without their dedicated and sincere cooperation this work would not
have been completed. Thanks in particular are due to Ms. Kousalya, Positive Women
Network of South India (PWN+), Mr. Deepak Singh, Manipur Network of Positive
People (MNP+), Mr. Naveen Kumar, Delhi Network of Positive People (DNP+) and
Mr. Manoj Pardesi, Network of Maharashtra by People living with HIV/AIDS (NMP+),
who coordinated the survey in their respective states.
We would like to thank all the respondents who participated in the study and took
pains to answer the questionnaire, a relatively long one. I can imagine that while
answering some of the questions, particularly on stigma and discrimination, they would
have had to relive some of their bitter experiences. We would like to offer our apologies
if the process, in any way, added to their agony. At our end, we tried to reduce this
by involving the PLWHA networks, in place of any other agency. This ensured that
the investigators were PLWHA themselves. No one else, possibly, was more qualified
or more sensitive to handle the job.
The study was completed with technical support from the ILO project team. A very
special thanks is due to Mr. Ravi Subbiah, Programme Officer (Research and
Documentation) for providing technical support to the networks in development of
research design and instruments, methodology, training of investigators, support
during the fieldwork and review of reports. Ravi coordinated the entire process
with remarkable ease, and was there to help whenever needed. Other members of
the ILO project team, Ms. P. Joshila, Ms. Divya Verma and Ms. Seena Chatterjee
viii
also deserve to be acknowledged for their contributions in technical as well as
logistical matters.
We would also like to thank Dr. Upma Sharma, who merged the data sets of four
states, did the final analysis and prepared the combined report. Dr. Sanjay Sahai
deserves a special mention for designing the cover page.
Finally, we would like to thank and acknowledge Ms. Chitra Narayanan for her
painstaking efforts in editing and putting together this report.
S.M. Afsar
National Project Coordinator,
Prevention of HIV/AIDS in the World of Work:
A Tripartite Response
International Labour Organisation, New Delhi
ix
List of abbreviations
AIDS Acquired Immunodeficiency Syndrome
ART Anti Retroviral Therapy
CNP+ Churachandpur Network of Positive People
DNP+ Delhi Network of Positive People
GIPA Greater Involvement of People Living with HIV/AIDS
HIV Human Immune Deficiency Virus
ILO International Labour Organization
INP+ Indian Network for People Living with HIV/AIDS
NACO National AIDS Control Organisation
NGOs Non-Governmental Organizations
NMP+ Network of Maharashtra by People Living with HIV/AIDS
PLWHA People Living with HIV/AIDS
PWN+ Positive Women’s Network of South India
VVGNLI V.V. Giri National Labour Institute
WLHA Women Living with HIV/AIDS
SRO Subregional Office for South Asia