Shirish Darak about stigma and HIV/AIDS

Shirish Darak (30) from India was enrolled in the Master Programme Population Studies at the University of Groningen in August 2007, with financial support by the Eric Bleumink Fund. Darak is a qualified doctor, but he wants to receive a training in demography, in order to help countering the spread of HIV and AIDS in his native country.

‘When I was in elementary school, my aunt died giving birth to her child. For two days she was hospitalized, but no one cared about her, except for my mother. It was then that I decide to become a doctor.

In 2000, after my graduating as a Bachelor of Medicine, I started working in a clinic for HIV patients. My mentors, who approached the disease as not just the medical issue, but a problem that is deeply rooted in the social system gave me the perspective to look at problem. Their compassionate work in the field motivated me to join their organization Prayas *, an NGO which mainly concentrates on issues around the medical and social aspect of HIV/AIDS and sexuality. While engaging myself to tackle the issue, I realized that I lacked the disciplinary perspective to understand the social and cultural aspects of health and sickness. HIV is of course a social problem as well as a medical one. That is why I took a Master’s degree in medical anthropology.’

Dealing with stigma

‘I cooperated in a larger research project to investigate the stigma connected with HIV and what their consequences meant for the infected. Until then data were extremely scarce, leave alone facts from the patients’ point of view. One of the most important findings of our research project was that stigmatization is a tremendous stress factor for people carrying the virus.

‘HIV infected people are considered immoral, because they have been infected by way of commercial/ extramarital sexual relationships. This is the stereotyped opinion in India. The situation is even more difficult for women, as a result of the social hierarchy. Women have no control over disclosing their status to significant others: only their spouses will decide about this. Moreover the mother-in-law often blames an infected woman when the husband (her son) is ill. The prevalent gender inequalities in the society make women more vulnerable. Sometimes she is even blamed by the husband for bringing the infection in the family, in spite of the fact that ninety percent of the HIV infected women have been infected by their men! While dealing with the issue one need to understand that people who get infected are not the ‘culprits’ but rather ‘victims’-of the harsh social realities they live in.

‘Now that treatment has become possible, a lot has changed for HIV infected people. They are able to lead a normal life. The outside world used to find out patients were ill the moment they showed signs of the disease and as a result of that they were excluded from the community, they had no job, no contacts. Nowadays their families are more willing to accept this fact, because patients who are taking regular treatment are in a position to lead a more regular and healthy life. Though medicines are available, they still are too expensive for the poor. The government’s free treatment programs are still beyond the reach of many.

Preventing mother to child transmission of HIV

After I joined Prayas I was involved with an institute for HIV infected children of sex workers. Once a week I used to visit them to play with the little ones. The children used to come to our clinic for treatment. The death of one of these children had a deep impact on all of us. It was then our organization undertook a major initiative for preventing transmission to children: the infection that can be transmitted to the child from mother during pregnancy, while in labour and through breastfeeding. In 2002 we started the project for preventing this transmission and in these five years we were able to help 730 HIV infected pregnant women with counselling support and medicines for preventing transmission to their babies. Thirty clinics are presently connected to our project and we want to extend this number as much as possible. It is my heartfelt wish that not a single child in India will be infected with HIV.’

Building a research group

In last five years we have gathered a lot of qualitative and quantitative data through our implementation of mother to child transmission prevention program. Because there is little information in India about the issue and considering the urgency for appropriate interventions, we want to analyze these data and share our experience. Here in Groningen I hope to acquire more knowledge about quantitative data analysis. My organization Prayas aims at building an expert research group, in order to conduct meaningful research based upon the actual needs of the people concerned. We hope to eventually generate evidence that can add to the voices of many HIV positive people- ’

* ‘Prayas - Initiatives in Health, Energy, Learning and Parenthood’ is a non governmental and non profit organization working to protect and promote the public interest in general and and interest of disadvantaged sections of society in particular. ‘Prayas’ is a Hindi word, derived from the Sanskrit, meaning ‘focussed efforts’: http://www.prayaspune.org