Undone by HIV-AIDS

[Guest guest]

An ILO (India) 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 responsibilities.

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 and above.

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

reproductive age-group.

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.

Source: http://www.infochangeindia.org/bookandreportsst53.jsp(Women’s Feature

Service, November 2003)