Wake up call for HIV/AIDS in U.P.
Official statistics are putting Uttar Pradesh firmly as one of India's low prevalence states for HIV/AIDS, even though stories from village after village show the disease making its way in. Abhijit Das
finds holes in surveillance and reports that state authorities are not yet taking the penetration
threat of HIV/AIDS seriously.
05 August 2005 -
When the news of Ram Pravesh's death in Mumbai reached his family members in Allari in the district of Azamgarh in eastern Uttar Pradesh, the people there were saddened but not surprised. Ram Pravesh had been sick for some time. The villagers remembered that the last time he had come home a year ago he had become as thin as a stick. He was due back again but his health deteriorated and so his wife had gone to look after him a month ago. Now he was dead. He was the eighth person to die of what is now called Bambaiwallah bimari (Mumbai's sickness) in the village in the last three years.
Currently, national authorities cross swords with international organizations over the number of HIV/AIDS affected persons in the country and the focus remains clearly on the high prevalence states. Uttar Pradesh does not figure on this list. But the disease has quietly started making its presence felt in the rural settlements of Eastern U.P., one of the poorest regions in the country.
Consider the case of Allari, it's a large village with about 400 households. Here one person from every second household has left the village in search of livelihood elsewhere. Many have gone to Mumbai, others to Surat or to Chandigarh. In the first six months of 2005 two others also died, one in the village and one in Mumbai, of the Bambaiwallah bimari -- HIV/AIDS.
Rajesh Chaturvedi of Grameen Punarnirman Sansthan, an NGO which works in the village says that there is one HIV/AIDS person living in the village now, but not every one knows about his status. Fortunately even when the HIV status is known, there is no discrimination or stigma attached to the condition as yet. Two persons who died in the last year came home, people knew that they were positive and they were cared for till the end. One of the surviving wives has even been given a job in the local anganwadi (pre-school centre) on compassionate grounds. This is in complete contrast to the ignominy that widows of positive people have to face in other parts of the country.
It can be argued that the villagers are unaware of the disease and so are not yet reacting in an inhuman manner. But this did not seem to be the case here. In Behrwa, a small market next to Allari, 6 people have died of HIV/AIDS and two are still alive. In Maghaipurva on the other side 5 people have died, and this is common knowledge. Once someone dies of this condition the family members immediately take his wife for tests to a local private nursing home in Azamgarh. In all cases that I enquired about, the women tested negative. However it was not possible to cross-check whether this nursing home did indeed conduct HIV testing.
In two cases the women had returned to their natal home. One of these women, who is still very young, was married for a second time. She was lucky to get married a second time, but ironically she was again married to a person who works in Mumbai, Chaturvedi notes wryly. Chaturvedi has been working on a reproductive and sexual health awareness project among youth for awareness and protection. He feels this is one way in which he can prepare the youth, because migration (especially to Mumbai) is seen as the only viable economic option.
Holes in surveillance
U.P. is not yet on the HIV/AIDS map, and yet is well known as having some of the worst health related indicators in the country. According to the official figures, with less than one percent prevalence among ANC clients and less than 5 percent prevalence in high-risk groups, Uttar Pradesh is firmly one of India's low prevalence states. This, despite stories from village after village in eastern U.P. providing evidence. But now that HIV/AIDS is making its way into the state, U.P. appears ill prepared to deal with it.
The one early connection U.P. had with HIV/AIDS was the attack that government authorities had launched on workers involved in HIV/AIDS awareness programmes, in 2000 and 2001. The government had framed charges of pornography and promoting homosexuality on the workers.
The nature of surveillance itself may be the reason for state authorities not taking the penetration threat of HIV/AID seriously. The State AIDS Control Society (UPSACS) is charged with the responsibility of responding to HIV/AIDS, through creating awareness, regulating blood-banking, maintaining surveillance sites and supporting Voluntary Counselling and Testing Centres (VCTC). In a state with over 170 million people and 70 districts, UPSACS is supporting 35 projects, of which 29 are targeted interventions or only focus on 'vulnerable' groups. Among the 36 surveillance sites in the state, 17 were STD (Sexually Transmitted Diseases) sites and 19 ANC (Ante Natal Care) sites. There were no rural STD sites as all these are situated at District Headquarters, which are urban.
Furthermore, there are only 70 VCTCs throughout the length and breadth of the state and since most of these are located in pathology and microbiology departments of medical colleges and larger hospitals they are inaccessible. Only a third of the persons tested here in the last year had come there voluntarily. Putting a VCTC in a pathology/microbio department means the centre remains out of public view. These departments in hospitals are not involved with much public dealing compared to the out-patient departments (OPD) or emergency or registration departments, or even the pharmacies.
Also when a centre is located in a district hospital it only caters to those who come to district headquarters, leaving out millions who may not. Most of the persons tested were referrals from other departments of the hospital and not persons who came in voluntarily to know their status. So the figures from the VCTCs cannot be representative for the state, especially those who stay in rural areas and do not visit the district hospitals for any problem.
There is very little attention to the most vulnerable group in Uttar Pradesh, the male migrant and his sexual partner. Studies have estimated that a little less than one fourth of all inter-state migrants in the country come from U.P. Many of these men continue to live and die outside the state. Even when they come back they may not visit the STD clinic at district headquarters where the surveillance sites are located. They may also not return home when surveillance is done, between August and October. A third reason why the infection is not showing up in ANC surveillance could be that this early generation of positive persons completed their reproductive lives before getting infected.
Reality and the Media role
The reality in U.P. is that the poor living far away from their homes are getting infected every day. Many are coming back home and are staying home, without any specialized care. Women are getting infected too.
The media is one route for creating awareness about social realities. An ongoing UNDP sponsored media study on HIV/AIDS reporting in newspapers shows that the local Hindi media is hardly involved in creating informed awareness on the issue. While the newspapers are giving space to HIV/AIDS related news, the coverage is too generalized, and mostly negative. Most of the state specific stories in the newspaper, the draft report notes, cover HIV/AIDS awareness events or camps where it is discussed as a non-specific threat.
There is hardly any space given to stories which discuss the lives of HIV-positive people. In one case a respected daily Hindi newspaper did a series on how an HIV-positive woman went about infecting other people. Another story carried in an English daily showed that the police have a very poor appreciation of either the health condition or their role in it. The story was on the result of a survey among policemen in Lucknow on their awareness about the condition and its relationship with law and order.
Media apart, the reality seems to be escaping even those who are in charge with dealing with this condition. The recent 'hero ya zero' (hero or zero) campaign launched by UNICEF and UPSACS in January displayed insensitivity towards HIV-positive people. Over 200 hoardings were displayed across five urban cities of Uttar Pradesh -- Lucknow, Varanasi, Agra, Kanpur and Allahabad. The visuals showed urban youth carrying messages on AIDS prevention using slang and punch-lines - Hero Ya Zero; Khiladi Ya Anadi; Kal Ho Na Ho and Dil Chahta Hai. The imagery of stylish urban youth showed a lack of understanding of the economic imperatives of migration, which as noted earlier, has emerged as an important factor in the growth of AIDS patients.
A group of civil society organisations who are working on HIV/AIDS objected to the campaign. The group also received feedback from HIV-positive people in Lucknow that the messages were absolutely discriminatory and were pushing the positive community to the margins of society. The strong civil society protest forced UNICEF and UPSACS to take off the hoardings.
Wake up call
The time for generic HIV/AIDS awareness campaigns in U.P. is now over. HIV/AIDS has become a major health issue for poor men and women in thousands of villages. The vulnerability lies in the very poverty and lack of economic opportunity that has become overwhelming in large parts of the state.
HIV/AIDS is not an over-night killer, and all references to a killer disease make it difficult for those who contract the infection to come face their HIV positive status with courage. There is a need to show that there is life after the infection and that HIV-positive people can and are able to live for more than a decade without any medication. It is also time to make better arrangements in U.P. for the care of those who become very sick.
Abhijit Das works on public health and human rights issues, and is associated with various organizations, networks, grassroots groups and related campaigns. He is a Clinical Assistant Professor in the School of Public Health and Community Medicine at the University of Washington, Seattle and has been a Fellow in Population Innovations of the MacArthur Foundation and a Packard-Gates Fellow of the University of Washington. Names of persons have been changed to maintain anonymity. Because of the sensitive nature of HIV/AIDS and the fact that villages are easily identifiable, village names have been changed as well.
