OneWorld.net (U.S.)

“For politicians HIV/AIDS continues to be seen as a health problem of people seen to be ‘morally corrupt’. The social, economic and political dimensions of the issue are still not beginning to get clear to these people.”

Imagine this sight: In the interiors of the coastal areas of Andhra Pradesh, a young woman is crouched over mundane housework, as her scantily dressed three small children play nearby. Her story reinforces the reality of HIV/AIDS in India. She sobs uncontrollably as she holds my hands and pours it out.

She had been recently widowed, as her husband had succumbed to infections brought on by AIDS. This was, however not the sole reason for her misery. She held my hand and took me to the garbage dump in one corner of the village – an area littered with excreta, home to stray dogs and pigs. This was where her husband had been left to die by the villagers.

He died the most undignified death, groaning in pain for days in the garbage dump as stray animals gnawed at his dying flesh. The HIV infection had made him such an outcast that none of the villagers showed any human feeling for the man even as his screams were heard by all through the darkness in the village at night. More than the death of the husband, it was the manner of dying that left this young woman in unfathomable grief. The chief minister of the state at that time was Chandra Babu Naidu, known for his remarkable actions and people-centric approach. Yet, oddly enough, not one among the local panchayat or other local political leaders came to visit this woman. All of this was happening far from the media glare, in a remote village in a coastal town of Samalkot. Here there were no rewards for speeches, gestures of touching an HIV positive person or for announcing any ex-gratia.

The woman today is probably just one among the 5.2 million infected in India. The picture of the woman comes back to haunt me as I wonder what happened to her three small children. Are they aware that in New Delhi, the political capital of the country, politicians could well jostle with one another to give a sound byte to one media or another on their efforts on HIV/AIDS?

In November, a plethora of events were organised to mark the World AIDS Day. Towards the end of 2004, students were brought in from all parts of the country to organise a mock Parliament that was addressed by Prime Minister Manmohan Singh. Dignitaries and celebrities joined the fray by talking about India’s epidemic that has reached alarming proportions and is all set to reach its tipping point. Mediapersons were taken off on jaunts and put up in expensive resorts to impart training on HIV/ AIDS issues. Yet each of these events seemed as far removed from reality.

Reality bites

Much of India’s reality has not been touched by the speeches of these neo-converts. The reality is that deep in the villages of Maharashtra, Andhra Pradesh, Tamil Nadu, Karnataka, Nagaland and Manipur, a large number of people with HIV are dying for want of basic food and basic medicines. A large number of children are becoming orphans, the elderly have been left behind to go back to ploughing the fields. HIV/AIDS drugs are unheard of. Or even if available, their supply dries up within a month’s time leaving the person to die even more quickly. HIV is now known to have reached rural areas of at least the six high prevalence states. And what does it mean? For a country interested in looking after its people it means a huge burden in terms of health costs. Various issues that we have not even begun to think about will emerge such as, children being yanked out of school after the death of parents, issue of livelihood for the sick and the dying, need for social support systems and of course the economic fall out of all this.

It is also significant to note that there are serious imbalances in the distribution of policy benefits across sections and regions. As in all social sector issues, benefits of policy and political commitments do not go beyond certain privileged groups and cities. It is true that political statements are far more visible today than they were five years ago. When our former Prime Minister Atal Behari Vajpayee first made an appearance at Vigyan Bhavan in New Delhi to address the Members of Parliament, the handful of uninterested faces was embarrassing for the government. But thanks to efforts of UNAIDS, the National AIDS Control Organisation and International Aids Vaccine Initiative (IAVI), a fair number of MPs can now converse intelligently on the subject. Congress leader Sonia Gandhi speaks on the subject at various international and national gatherings. The current Prime Minister is now chairing the National Council on AIDS and has recently joined efforts to involve media houses to work towards HIV/AIDS awareness. But whether these speeches will translate into commitments for people is yet to be seen.

The inequities in the distribution of policy benefits are further compounded by widespread inadequacies in the public health care system in India. In the current scenario, the government is not in a position to provide even the basic health services to people. The state of primary health centres across the country is well known. While Primary Health Centres (PHCs) are really the first line of care in the public health system, many are not equipped with the basic drugs or equipment and there are centres where the doctor is not to be seen on most days. People by and large are so disenchanted with the public health system that they would rather go to a quack.

If the Indian government in the longterm is serious about providing antiretroviral medicines to five million people living with the virus (even as the numbers continue to grow), an overhaul of the public health delivery system, so that it can help play an effective role in responding to HIV and the host of related opportunistic infections, becomes imperative. Ideally, doctors at PHCs need to be trained in diagnosing HIV-related infections and in dispensing anti-retrovirals, and should also have enough resources and knowledge about infection control. Hospitals, community health centres and terminal care homes are already getting flooded with people suffering from opportunistic infections of HIV. A few dedicated health care workers are trying to cope despite there being no gloves, no antiseptics, no antibiotics and even basic drugs for treatment of infections.

Political commitment and acknowledging the epidemic

Lip service to AIDS should have ended a decade ago. Towards the end of its second decade of entry into India, there is no time to lose. We could always begin by asking MPs whether any of them have contributed any of their development funds towards HIV/AIDS work. The answers that I have come across so far range from, “Madam, you ask some very relevant questions,’’ to “We are planning to do that’’. Only one was brutally honest and said categorically that MPs are far from being interested in HIV/AIDS as an issue. It is not something that gets them votes or an issue that they can go back to their constituencies and discuss. Ceremonial speeches of politicians do not imply political commitment – as it is obvious from the fact that HIV/AIDS as a concern found no mention in the election manifestoes of major political parties in 2004.

For politicians and influential leaders in society HIV/AIDS has not been seen as an issue that concerns all of “us’’. It continues to be seen as a health problem of people seen to be “morally corrupt’’. The social, economic and political dimensions of the issue are still not beginning to get clear to these people. The kind of national momentum that for instance countries like Thailand or Uganda could build up before they could check the spread of the virus, is far from being anywhere near sight.

Politicians initially regarded the spread of AIDS as a law and order problem. Policymakers believed that they could contain the spread by controlling certain high-risk groups, thus preventing the virus from spreading to the general population. Among the measures considered in early 1990s were incarcerating infected sex workers, deporting HIV positive foreign nationals, and mandatory testing of foreign students coming from countries with high prevalence of HIV/AIDS.

We know that politicians are bound by their desire to appeal to their political constituencies. Issues of HIV/AIDS may not fit into their scheme of things, especially with the widespread stigma and discrimination that come with the disease and the sexual taboos that need to be transcended while addressing the issue. So even at the cost of millions of lives politicians will unashamedly spread the myth that HIV/AIDS is not an Indian disease.

For instance, Murli Manohar Joshi, the former Union Minister for Human Resource Development, refused to accept that vast numbers of Indians were living with the virus and that it was an ever increasing threat. At every speech he made in the country or abroad he emphasised the strong moral fabric of India, which would not allow the virus to spread. The former Union Health Minister Sushma Swaraj virtually abandoned condom promotion to please the party and party constituencies that would like to believe that in moral India people do not indulge in sexual practices outside marriage. Politicians have ignored that all the factors that lead to the acceleration of the epidemic are present here: poverty, migration for work, poor status of women, lack of political will and apathy of policymakers. Again, most will not believe that Indian homosexuality is quite common, even though illegal. In Lucknow offices of Naz Foundation, an NGO working to bring about awareness amongst men having sex with men, were targeted for police raids as the premises were believed to keep “pornographic material and were being used for unnatural acts.’’

Towards better policies and implementation

The new government has at least acknowledged with true honesty that HIV cases are increasing. No longer is there an attempt to propagate the myth that the spread of HIV has been checked. At present, India’s AIDS policy focuses on prevention. More resources have been put into mother to child prevention, surveillance, blood and blood products screening. But care and treatment are still low on priority.

However, these concerns now need to come down at the level of states and districts. As a case in point, a state such as Bihar should not be content looking at the numbers that get churned out every year from its surveillance centres that label it as low prevalence. A large number of people from the state go to Mumbai as migrant labourers. Much of the migrant labour is also known to visit Mumbai’s sex workers where infection rates are extremely high. There can be no doubt that HIV cases are silently multiplying in Bihar’s interiors and are continuously missed by its rudimentary health systems. I found private centres in the capital city of Patna reporting a large number of positive cases while government hospitals just turned away anybody found to be infected.

Strengthening the surveillance system

The government must also make clear that the surveillance system, which provides estimates of the incidence of HIV cases, is far from perfect, especially since it informs government policy. In the initial phase in 1993, only 55 sentinel sites were giving an estimate of the numbers of HIV/AIDS cases from all over the country, which has increased to 455 in 2003.

The estimates that experts collate from the data available at these sites are solely dependant on the number of sites, the quality of data coming out of these sites, and the belief that the sites chosen give a correct representation of the population in the area. In short, the better the health infrastructure of a state, the more accurate the results from sites in that particular state. It is small surprise then that almost all the northern states show very few HIV numbers compared to those down south.

Conclusion

Most of India still does not see HIV/AIDS as their problem. Much of the blame is to be apportioned at the donor driven policies that targeted the so-called high risk groups such as sex workers, migrant labourers and truck drivers for interventions, while making the rest of the population feel safe. A good leadership can change these mindsets. The present government needs to accept that India has reached a crisis point on HIV/AIDS. It needs to put its best men and women out, who can carefully articulate the problem and work with all state governments. It is late. But it is never too late to save another life. 

Author: Kalpana Jain is Kaiser International Journalism Fellow based in India.