Urmila was always inclined to help others less privileged than herself. She had a master's degree in social work and she was married to a mechanical engineer. Urmila decided that she would be able to realise some of her dreams by working as a counsellor. But her little world came undone when she tested positive for the Human Immune Deficiency Virus (HIV) during the fifth month of her pregnancy. Her husband, too, tested HIV positive.
Although Urmila's child was born with the HIV infection, she and her husband were determined to fight. Unfortunately her husband died a few months later, and a depressed Urmila sought the support of her in-laws. But not only did her in-laws ostracise her, they also tricked her into signing away her and her son's rights to her husband's share of the family property. A traumatised Urmila had no option but to return with her son to her parents' house in Mumbai.
Despite difficult circumstances, Urmila was lucky because she had supportive parents. But most HIV positive women in India are not as fortunate. "A majority of the 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).
In 2002, ILO (India) initiated a study to understand the socio-economic impact of HIV/AIDS on infected persons and their families, particularly on women and children. The findings of this report which was published recently are 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 Tamilnadu - chosen because of the high-prevalence of the disease. 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 per cent were women, the study reveals that 74 per cent of the HIV positive women faced a lot of discrimination, hardships 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 through 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.
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 much as 35 per cent of the children were denied basic amenities and about 17 per cent 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 per cent of those educated up to school level and 71.42 per cent of those who were illiterate. Women were more vulnerable, with 17.21 per cent being illiterate compared to 11.18 per cent of the men. While 22 per cent of the men were graduates and above, only eight per cent of the women were graduates and above.
The study also indicates that the average monthly income of a PLWHA was about Rs 1,117, 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 averaging 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 is 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.