An ILO study on the socio-economic impact of HIV on infected
persons finds that the HIV-positive face the maximum
discrimination within their families
By Swapna Majumdar
In 2002, ILO (India) initiated a study to understand the
socio-economic impact of HIV/AIDS on infected persons and
their families, particularly women and children. The findings
of this report, which was published recently, are both
meaningful and significant because of the sensitivity with
which the study was carried out. Conducted in collaboration
with the network of people living with HIV/AIDS (PLWHA), the
study underlines the adverse economic impact of HIV/AIDS, and
the trauma arising from stigma, discrimination and ostracism.
The study focussed on four Indian states -- Delhi, Maharashtra,
Manipur and Tamil Nadu -- chosen because of their
identification as high-prevalence states. The data was
collected by the networks of people living with HIV/AIDS in
Delhi (DNP+), Manipur (MNP+), Maharashtra (NMP+) and the
Positive Women's Network of South India (PWN). All these
organisations maintained the confidentiality of PLWHA.
The most disturbing aspect of the study's findings pertains to
the impact of HIV/AIDS on women. Conducted amongst 292 people,
of whom 42% were women, the study reveals that 74% of the
HIV-positive women faced a lot of discrimination, hardship and
Ironically, it was the family of the infected person that
discriminated the most compared to other sections of society.
Women felt betrayed by this lack of understanding from the
family despite the fact that they were (and are) the prime
caregivers, doing all the household chores uncomplainingly.
The women were also deeply hurt by the aspersions cast on the
their sexual lives by their in-laws, despite the awareness
that Indian women in general have no control over their sexual
expression. Although a majority of women were infected by
their husbands, they were blamed for their death. In many
cases, the woman was accused of causing her husband's illness,
and either disowned or deserted by her in-laws.
"A majority of HIV+ women are discriminated against by
their in-laws as well as their parental family. Traditionally,
women tend to rally around each other in times of trouble. But
we found that even other women in households that had HIV+
women are not sympathetic perhaps because of fear of
society," says S M Afsar, project director of the India
office of the International Labour Organisation (ILO).
The children of infected parents are also heavily
discriminated against -- they are verbally abused and taunted
and not allowed to play with other children. Although there
was no evidence of forced child labour, as many as 35% of the
children were denied basic amenities and about 17% were forced
to take on petty jobs to augment the family income.
Education is considered an important tool for attitudinal
change. In keeping with this view, the study found that a
relatively high level of education among the infected (and by
implication their families) had an impact on the extent of
discrimination they experienced. Fifty-nine per cent of
postgraduate respondents faced discrimination compared to 74%
of those educated up to school level and 71.42% of those who
were illiterate. Women were more vulnerable, with 17.21% being
illiterate compared to 11.18% of the men. While 22% of the men
were graduates and above, only 8% of the women were graduates
The study also indicates that the average monthly income of a
PLWHA was about Rs 1,117 (1US$ == Rs 46), whereas average
monthly expenditure was Rs 3,185. In many cases, this gap was
met by loans or sale of assets leading to an increase of
indebtedness to the tune of Rs 4,818 per family. While medical
costs varied in accordance with the stage of the illness, the
fact that HIV-infected persons have to go for regular
check-ups underscored the economic impact of the infection.
The ILO study has also shown and reinforced the fact that HIV
infection cuts across all barriers of class and religion.
Besides, the findings also reveal that a majority of the
infected people are from the highly productive and
There can be no doubt that well-designed interventions are
urgently required to reduce the socio-economic costs for PLWHA.
And equally important is the realisation that discrimination
against PLWHA is a denial of their basic fundamental rights.
Unless policymakers facilitate a supportive environment that
encourages HIV-positive people to reveal their status and seek
help, India may soon have a still larger number of people
affected by HIV/AIDS.