The World AIDS Campaign this year focuses on combating HIV-related stigma and discrimination. A recent ILO study covering Tamil Nadu, Maharashtra, Delhi and Manipur revealed just how extensive discrimination against the affected and infected is
A comprehensive new report issued by UNAIDS and the WHO, in advance of World AIDS Day on December 1, says that the global AIDS epidemic is showing no signs of abating. Five million people became infected with HIV worldwide and 3 million died this year alone, the highest ever.
The UNAIDS World AIDS Campaign this year focuses on combating HIV-related stigma and discrimination. UN Secretary General Kofi Annan said in his World AIDS Day message, "We must keep AIDS at the top of our political and practical agenda. That is why we must continue to speak up openly about AIDS. No progress will be achieved by being timid, refusing to face unpleasant facts, or prejudging our fellow human beings -- still less by stigmatising people living with HIV/AIDS. Let no one imagine that we can protect ourselves by building barriers between ‘us' and ‘them'. In the ruthless world of AIDS, there is no us and them. And in that world, silence is death. On this World AIDS Day, I urge you to join me in speaking up loud and clear about HIV/AIDS. Join me in tearing down the walls of silence, stigma and discrimination that surround the epidemic. Join me, because the fight against HIV/AIDS begins with you."
The stigma attached to HIV/AIDS leads to discrimination against infected people and their families. The resulting silence and denial of the problem hampers prevention and care efforts. It marginalises the infected as well as affected. People Living With HIV AIDS (PLWHA) internalise the stigma and this has a devastating impact psychologically.
Says Kousalya, Tamil Nadu Coordinator of the Positive Women's Network and head of a team that recently investigated the socio-economic effect of HIV/AIDS on PLWHA in Tamil Nadu, "Discrimination is a major challenge in the fight against AIDS. Apart from victims losing jobs and livelihoods, it also leads to depression, a lack of motivation, helplessness and despair."
Nearly 40% of the countries that have signed the Declaration of Commitment on HIV/AIDS (adopted at the UN General Assembly Special Session on HIV/AIDS in 2001) have not yet adopted legislation to prevent discrimination against PLWHA. Fear of discrimination often prevents PLWHA from seeking treatment. Some 70% of HIV/AIDS patents in India said they had faced discrimination, most commonly within families and in health-care settings, according to recent International Labour Organisation (ILO) research.
The ILO study, covering Tamil Nadu, Maharashtra, Delhi and Manipur, found that the key reasons for the pervasive feeling of discrimination are neglect by the family, denial of treatment by the medical fraternity, shunting to other hospitals, blackmailing by the employer who may threaten to disclose the HIV status, physical and verbal abuse, accusations of spreading the virus, moving away when the infected person passes by, exclusion from social gatherings and being asked to leave the place by other occupants. Commonly told untruths, particularly to protect children from the stigma, include saying that the infected individual is suffering from jaundice or cancer or tuberculosis.
Women faced more discrimination as compared to men. In this study covering 292 respondents in the four key states, about 74% of women mentioned that they faced discrimination as against 68% of men. In general, a woman does all the household chores and manages the family. Paradoxically, it was the family which discriminated against her the most. About 23% of women were discriminated against by family (as compared to 19.82% of men). A similar trend was observed in the context of neighbours, educational institutes and community per se. However, at hospitals, men faced more discrimination. But, as Kousalya confirms, "It could be because women tend to visit hospitals less."
Says Dr Suniti Solomon, chief of YRG Care, a leading research establishment and the woman who documented the first HIV+ case in India, in 1986, "Discrimination cuts across classes and communities. This is particularly so concerning women. I notice this often in our counselling sessions. A couple, both doctors, had discovered that the man was HIV+. His wife was still in the window period. He did not want his mother, who was waiting outside in the reception area, to be informed because the older woman was a heart patient, or so he said. But she (the wife) was weeping and begging that I, as their doctor, inform her mother-in-law or else it would be assumed that she had infected her husband and not the other way around."
Some of the sample responses that emerged from the study:
A woman from Tamil Nadu said, "The remarks made by the hospital staff made me feel very ashamed."
Another woman said, "The doctor asked my spouse to administer injection and saline fluids on his own."
A third woman recounted how, "the hospital staff has given us a yellow card so that people can easily identify us as HIV+."
A man from Delhi said, "After my family knew about my HIV status, they immediately kept my glass, plates, clothes etc separate and I was given a separate bedroom."
In a case from the town of Karur, a man was brought into a hospital for emergency neurosurgery. The surgeon, finding out about his ‘high risk' status, called for a blood test before beginning the surgery. The report was negative but the patient was dead before he could be helped. In the city of Coimbatore, when a young motorcycle accident victim was rushed to a private hospital, he was found to be HIV+ upon a blood test. This hospital, and the one he was taken to next, turned him away. He was brought to Chennai after a facility which would accept him was found. By this time, 48 hours had lapsed and it was too late to save him.
Even children are not spared the stigma associated with HIV/AIDS. In Kerala, two orphaned HIV+ siblings Bency and Benson were banished from their school in 2003, and then refused admission to other schools. Despite the efforts of the President of India and AIDS activists to dispel misconceptions about AIDS within the community, the children were forced to receive school lessons and write exams at home.
Says Kousalya, "A hospital is an institution which is supposed to provide treatment and care. It is the place that one associates with providing care and support to the sick. However, when discrimination takes place even in a hospital, one's faith in the system is totally shattered."
Some respondents even revealed instances where their HIV results had been published in the local newspapers along with their names.
She adds, "In focus group discussions we found that hospital staff often presumed that if one partner is positive, the other is too. So, not only the infected person but also the affected persons are discriminated against. Sometimes, they are even denied treatment."
Pregnant women are even more vulnerable -- doctors refuse to perform Caesarian sections or help with deliveries. This is despite the fact that, compared to hepatitis, the chances of doctors contracting HIV from a patient during an operation are not very high. The global figures stand at 0.3 to 0.5%
The 400-million working population in India, defined as anyone seeking employment, falls in the 15-49 age group. Around 89% of the reported HIV cases affect this age-group, highlighting the risk it poses to the economically active segment of society. About 92% of the workforce is in the informal sector, which is characterised by low productivity, income levels and poor social protection. The ILO study says this sector is particularly vulnerable to HIV. With an estimated 3.97 million HIV+ people (2001 figures), India has become the nation with the second-largest number of people living with HIV/AIDS after South Africa. Estimates show that roughly one out of 10 HIV+ persons in the world is an Indian. Given the country's huge population, even low-prevalence rates indicate a large number of people living with AIDS. It is now known that the epidemic is no longer confined to the high-risk groups of sex workers, migrant workers, truck drivers and injecting drug users, but has blanketed the general population.
Says Dr Solomon, "We have set up Community Advisory Boards to bridge the gap between researchers and participants, to create long-lasting working partnerships in HIV/AIDS-related projects. First set up in 2000, CABs have representation by various community groups, women in sex work, IDVs, MSMs, community women, religious leaders, psychiatrists, gynaecologists, professionals like accountants and lawyers and representatives from NGOs. This way we can discuss the social, political, medical, legal, ethical and religious issues surrounding research. Discrimination overlaps into all these territories."
Ratna, one of the case studies in the ILO report, is now separated from her family and living alone. Her husband looks after their six-year-old daughter. She holds a post-graduate degree and works as a counsellor at the Positive Women Network. She came to know of her HIV+ status while donating blood for an emergency case at the hospital where she worked as a lab technician. She did her own HIV test. Soon her husband revealed her status to the community, her relatives in her hometown and the government organisation where she worked. As a result, she lost her job and experienced severe negative reactions from her family. Now, since she is part of the network, she is open about her HIV status and has gone public in voicing issues affecting PLWHA. This has facilitated a supportive environment and helped in self-empowerment. Since she is alone, her current income of Rs 4000 per month satisfies her basic needs. But access to Anti-Retroviral Therapy is a cause for concern. Additional expenditure on medicines and tests poses a burden she cannot afford. Also, she longs to be with her husband and daughter.
The ILO study comments that discrimination from the larger community can be expected to an extent but not from the immediate family or medical fraternity. This is especially true for sites like Imphal and Churachandpur where almost every family has one member who is HIV+. A startling 82.1% of the respondents there said they faced discrimination on account of their HIV+ status from their family, from the medical fraternity or neighbours. This figure is troubling because over the last five years or more, different agencies (government, international and NGOs) have been conducting numerous campaigns to sensitise the public on HIV. The attitude of the medical fraternity in terms of the discrimination experienced by PLWHA is inexplicable, says the study.
But, says Dr Srikrishnan, a senior researcher with YRG Care, "It is not as if the educated elite are any more understanding. When a newspaper published an article based on a report we had published, the residents of the building our office occupies turned cold and tried to get us evicted. Till then, they had not known that we were doing AIDS-related work. This is happening in an upmarket locality of Chennai. In fact, our experience shows there is greater honesty and acceptance among the underprivileged who do not come with the additional factor of ‘reputation at any cost'."
InfoChange News & Features, December 2003