Last week the Gujarat High Court ordered the state government to protect the identities of HIV/AIDS patients treated in government hospitals. The court was judging a Public Interest Litigation (PIL) filed against Jamnagar’s Guru Gobindsingh Government Hospital for labelling and parading an HIV/ Aids patient. The PIL pointed out that such acts would deter HIV/Aids patients from coming forth and seeking treatment.
The High Court agreed. The “identity of patients who come for treatment of HIV/Aids should not be disclosed, so that other patients also come forward for taking treatment,” it ruled. The court specified that the “fear of stigma and discrimination, more particularly in a country like India where almost 30 per cent of the population is illiterate, is a driving force behind the spread of HIV/Aids”. Protecting the identity of an HIV/Aids patient is vital, because, as the court said, the “social and economic repercussions of being identified as infected can be devastating and can include violence, rejection by family and community members, loss of housing and loss of employment, to name only a few.”
This, of course, is encouraging news. But the court is dealing with an issue that could have been settled several years ago. The PIL itself had cited a Supreme Court guideline specifying that the identity of such people must not be disclosed. (It had also sought action against responsible officials, which did not really happen, because a doctor and a nurse involved had already been transferred – which seems to be punishment enough.)
The fact is that since the 1990s, the matter of confidentiality of HIV/Aids patients has been in discussion. And since 2006, there has been an HIV and Aids (Prevention and Control) Bill sitting around, that addresses such matters. Sadly, nothing has come of it, as our politicians and bureaucrats fiddle and Aids patients die of shame and lack of proper care.
The stigma of Aids is so strong that it can ruin lives, destroy families, devastate households. Even people caring for Aids patients are regularly shunned in our unfortunate land of the fearful illiterate and their feudal diktats. The stigma of HIV/ Aids could lead to withdrawal of social support, affect employment and even access to healthcare. People with HIV often face violent verbal and physical abuse, even within their home.
This PIL in Gujarat High Court was regarding a pregnant young woman who had a warning label stuck on her forehead declaring her HIV positive status as she went about the hospital taking tests, consulting doctors or just waiting to be treated – at a safe distance from other patients. Sadly, this fear of people with HIV/Aids is not specific to either small town India or to public hospitals. It is a pervasive fear that often cripples the support-structure, caregivers and even the medical fraternity in not just rural but also in urban, cosmopolitan India.
But of course, it hits rock bottom in the villages. Take last month’s news of five Aids orphans who had been thrown out of their own home in Jamua village, in UP’s Pratapgarh district. When their parents died of Aids, the children were deserted by relatives and driven out of the village by neighbours scared of infection. With no one to turn to and nowhere to go, the children, aged between seven and 17, were forced to live in a graveyard outside the village. Only after a media hullabaloo were they promised some shelter – and possible medical assistance – by the Uttar Pradesh government.
This ostracism, stigma and blinding fear has been a hallmark of HIV/ Aids in India. But it need not have continued till today – more than a quarter century after marking its presence here. The HIV and Aids (Prevention and Control) Bill that has been hanging fire for seven years had prescribed necessary steps to stop such discrimination and to protect the privacy of people living with HIV/ Aids. The Bill actually recommended a jail term of up to two years for any spoken or written word, or display of information or advertisement, that could lead to hostility towards an HIV-positive person. You could also be fined up to Rs 1 lakh.
The Bill could significantly curb, if not entirely get rid of, the various forms of discrimination that attack an HIV/ Aids patient as harshly as the HIV virus. It addresses various issues, including the access to healthcare, proper medication, special intervention for vulnerable groups, special care for children, protecting employment and setting up health ombudsmen in every state.
It attempts to stop malpractices like compulsory testing for HIV/Aids or testing without consent. Testing for HIV/ Aids cannot be a pre-requisite for employment, the Bill specifies, or for access to healthcare, education or to public places like hotels or restaurants. And an affected person cannot be prevented from buying or renting a house. The courts would be able to protect them if they did face such discrimination. And protecting the privacy of a person with HIV – particularly with regard to confidentiality between doctor and patient – is addressed at length.
But in spite of repeated demands by activists to table and debate the Bill, there has been very little happening on that front. Except for the Bill being pushed back and forth between the law ministry and the ministry of health and family welfare. The Bill almost made it last year, but as it happens so often in our curious land, did not finally succeed.
If the HIV and Aids (Prevention and Control) Bill, 2012 does get passed in some form, it could usher in a sea-change in the way HIV/ Aids is looked upon and treated in India. But even without it, perhaps there is a case to look at the issue of privacy.
Usually in mature democracies, privacy is seen as a fundamental human right. Yet, our country has no comprehensive law for privacy – anyone can violate our privacy and not worry about it. Including our own government. Which it does, happily. For the sake of democratic freedoms, and for the sake of dignity, perhaps it is time we insist on setting up laws to protect our right to privacy.
Antara Dev Sen is Editor, *The Little Magazine*.