Irrational complacency, irrational fears

Today, some 6.4 million are believed to be affected by the disease in a region where 60 per cent of the population is sexually active. India is estimated to be particularly vulnerable with some 3 to 5 million HIV infections. Officially, by the end of July 1998, the countryhad 78,904 HIV infections and 6,386 AIDS cases, but the actual figures could be much higher.

Says Madhu Bala Nath, advisor on HIV and gender to UNIFEM, 8220;We are looking at a country where there is a high prevalence of the disease in at least four regions the Northeast, Tamil Nadu, Maharashtra and Andhra Pradesh. We are looking at a country where a large percentage of the population is in the sexually active category.8221;

Nath is also critical of the view that India should concentrate on fighting malaria and tuberculosis instead of AIDS. 8220;These distinctions are breaking down. Last year, 30 per cent of the TB cases worldwide were AIDS-related,8221; she says.

Nath finds African societies more pragmatic about the issue. 8220;While we assume that our cultural and social factors will prevent AIDS from acquiring pandemic proportions Africa, I find, is far more realistic about such matters.8221;

It is a realism that India can certainly learn from. The ugly and brutish brush with AIDS deaths through the late Eightiesand Nineties have forced countries like Uganda and Tanzania to install systems that could, in the long run, check the rampant spread of the disease. The first signs of an HIV turnaround are surfacing. The prevalence rates among pregnant women in Uganda and those among young people in Tanzania have fallen by 40 and 60 per cent.

Changing social attitudes and government policy towards HIV/AIDS, in a culture where widespread stigma is attached to the disease, is certainly a difficult enterprise. But somewhere along the way, the realisation seems to have dawned in many of these African nations that without a human rights-based approach to the disease, it would be impossible to challenge its reign.

The Uganda Network on Law, Ethics and HIV/AIDS initiated a legal review process to safeguard the human rights of people living with the condition and recommended that ethical norms govern biomedical research and drug and vaccine trials in the country. It argued that the testing, counselling and treatment of theAIDS-affected must be done with sensitivity and professionalism.

Similarly, the Zimbabwean Intersectoral Committee on AIDS and Employment came up with a national code on AIDS and employment which institutionalised norms governing job access and security, as well as training and employment benefits for the affected.

India, in sharp contrast, has remained supremely indifferent to such issues. As Anand Grover of the Lawyers Collective observed in a recent article, 8220;The number of cases of mandatory testing, isolation of people living with HIV/AIDS, breaches of confidentiality, discrimination and harassment is increasing rapidly throughout the country.8221; He argued that there is an urgent need for law reform, for new laws and for the training of lawyers, legal activists and paralegals on key issues. As he put it, 8220;Thus far the Indian government has failed to develop a sensitive and supportive legal environment to deal with the epidemic.8221;

Every person stricken with HIV/AIDS is literally driven undergroundby the stigma and discrimination that comes his or her way. In her recent study on HIV/AIDS discrimination, stimatisation and denial8217;, Shalini Bharat of the Tata Institute of Social Sciences, Mumbai, relates instance after instance of patients being subjected to the treatment that the leprosy-afflicted had experienced in Biblical times.

Bharat cites the case where the dead body of a man who died of AIDS was not allowed to be brought into his village near Bangalore. Within a few days the local community had hounded the man8217;s widow out of the village, accusing her of being an 8220;AIDS carrier8221;. It8217;s not just rural India that displays such cruel and uninformed behaviour. According to Bharat, prejudice and stigma are manifest at every level of society. In hospitals, patients are routinely refused treatment and access to common facilities like toilets. Even in death, they are not spared. The bodies of AIDS patients are routinely covered with a plastic sheet.

The situation in the workplace is not much better.Summary dismissal and the withdrawal of health and insurance facilities are the norm. Within the family, relationships break down, desertion and separation follow. As Bharat notes, the fear of social opprobrium, guilt, and desperation often keep infected members from accessing help and support. She writes: 8220;HIV/AIDS related discrimination and stimatisation and denial is pervasive and extensive, affecting people8217;s will to fight and survive AIDS.8221; This, in turn, renders the disease a hidden one and adds to the silent spread of HIV/AIDS in the country.

Much of the popular response to the disease is an irrational fear based on inadequate knowledge and a culture of silence about sexuality. Indeed, this fear and silence would first have to be addressed if HIV/AIDS in India is to be defeated. As Nath says, 8220;Our focus thus far has been on prevention rather than care. If you make care your entry point, you get people sensitised to the disease. Care is, in any case, essential when it comes to managing a diseasesuch as this, which is so closely linked to human behaviour.8221;

The Aids Blackboard