Tackling the scourge

Even though the exact number of the HIV/AIDS-infected in India is at best a guesstimation, the pandemic is for real — all the government has to do is face up to it

Sanjay Kapoor Delhi

Sushma Swaraj, health minister in the erstwhile Bharatiya Janata Party-led coalition, is a feisty woman. With her typical bridal Banarasi saris and sindoor (vermillion) liberally spread in the parting of her hair, she has striven to project herself as a virtuous Indian woman (Bharatiya nari) who considers it a blasphemy to even talk in public about sex. Her carefully-cultivated image was "propah" from every which way you looked at it. She was seen as a pious Hindu counterpoint to everything that was sinful, promiscuous, and smacked of a Western mindset. Through her conservative but elaborate attire, she wanted to show her superiority to those (in her context, read Congress president Sonia Gandhi) who bucked the Hindu way of life.

Expectedly, in her capacity as health minister, Swaraj more or less bunged the megatonnage of her religious fundamentalism on the nation's health policy, such as it is. Her prudery upset earlier well-established health policy initiatives, one of which was the country's condom programme designed to prevent the spread of sexually-transmitted diseases (STDs) and the more politically-sensitive pandemic of HIV/AIDS. Swaraj nursed the notion that spreading condom awareness wasn't the right way to tackle the rampaging virus; abstinence and monogamy were, in her reckoning, an infinitely better option — actually, the only option. She also felt that an AIDS awareness programme that used visually-suggestive latex prophylactics as a preventive measure would only promote promiscuity amongst youngsters.

Former health secretary J V R Prasada Rao, who silently watched over a religious ideology bending the nation's health policy to its will, agreed in an interview to Hardnews ('HIV/AIDS figures can never be accurate', December 2004) that the AIDS control programme suffered immensely because the lowly, low-tech condom is still the best and least expensive way to control the spread of AIDS. Rao retired from his department a relieved man, after it shed the obscurantist idiosyncrasies of a religious ideology once the United Progressive Alliance government took over in June this year.

The other stumbling block was a section within the BJP-led government that was, in addition to being retrograde, fiercely xenophobic. AIDS was an issue that gave maximum play to their fears. Swaraj's predecessor, former filmstar Shatrughan "Shotgun" Sinha, had seen in the AIDS pandemic the spoor of an international conspiracy. Till he was forced to change his tune, he saw everywhere the hand of a vested interest bent upon creating a socio-medical scare.

Sinha told Hardnews, "These NGOs were creating panic in the country on the basis of a CIA [Central Intelligence Agency] report, while there was another report which contradicted the CIA report findings. I know that AIDS is a money-making racket and there was nothing that the government could do about it." Sinha had even refused to entertain Bill and Melinda Gates when they came to India. He later did a volte face, saying, "What's the harm if we expect their grants and utilise them until our health services are well-equipped?"

Such needless confusion about the health ministry's mandate has caused not a little problem for India's AIDS programme. People in India living with HIV/AIDS increased from 3.97 million in 2001 and 4.58 million in 2002 to 5.1 million in 2004. While the epidemic first started to spread in Tamil Nadu, Maharashtra and Manipur, no single state can be considered entirely unaffected today. (Report compiled by the Population Foundation of India and the Population Reference Bureau)

After the BJP government was voted out, the new government restored sense and priority to handling the pandemic. Among the first steps the UPA government took was transferring the earlier chief of the National AIDS Control Organisation (NACO) to the Planning Commission and appointing someone who has considerable expertise in building a workable communications strategy on issues of public concern. The new health minister, Anbumani Ramadoss, also announced that he would appoint auditing firms like PriceWaterhouseCoopers to compile ground-level statistics of the actual number of HIV-infected persons. The new NACO chief, S Y Quraishi, informed Hardnews (read “The AIDS problem has moved to the general population”, p 32) that the government was about to float a tender to hire an auditor for this purpose.

While this decision shows, more than anything else, the government's lack of trust in the manner of gathering statistics — which AIDS combatants use to formulate strategy — there remains a manifest reluctance within the government to face up to the enormity of the crisis. Notwithstanding the fact that the diffidence might have something to do with the adverse impact that high stats would have on India's credit ratings and tourism environment, other countries plagued by HIV/AIDS have found merit in transparency and responsibility.

It is for this reason that most government officials take with a pinch of salt estimations from people like Professor Richard Feacham of the Global Fund that AIDS stats in India will eventually surpass South Africa, where the rate of growth is today far in excess of India's annual rate of 0.8 per cent. Some reasons for Feacham's misgivings emanate from NGOs involved in spreading HIV/AIDS awareness. Many NGOs are ill-trained and driven by the lure of money (HIV/AIDS work in the developing world attracts often un-audited multimillion-dollar funding that  has long overtaken the quantum of money for other developmental work). This largesse has resulted in NGOs amplifying incidents far beyond natural proportion (read “Unjustly damned”).

What comes clear from this miasma of half-truths and subjectivity is that no one, within government and without, knows precisely how big the pandemic is. United Nations figures, based on reports pouring in from 550 so-called "sentinel sites" in India, indicate roughly 5.1 million HIV/AIDS infected, but this could be just so much guesstimation. Since much of the evidence is anecdotal, methodology and strategies are feel-of-the-ground.

For instance, Injecting Drug Users (IDUs) in India's culturally and topographically distinct Northeast, the seven states of which are home to the country's maximum number of NGOs working with HIV/AIDS, probably has its maximum number of HIV/AIDS-infected, too. But much of this is extrapolation using calculus.

Security experts feel that in the troubled state of Manipur, AIDS could be intensifying the disquiet amongst the youth, who are at the vanguard of the agitation against the Indian government. The Northeast has long had the reputation of being easy on drugs, with many youth being habitual users. Malcontent and addicted, they are ripe for violence.

Security experts also believe that HIV/AIDS is finding its way into the barracks of the armed forces in the Northeast, many of whom are in close contact with the people. Most defence personnel contract the disease through sex-workers and unsterilised drug-use hypodermics.

The ministry of defence in New Delhi has been inundated with reports about the high incidence of HIV/AIDS among security personnel posted in the Northeast (and even in Jammu and Kashmir). The media recently reported the discovery of more than 200 infected Central Reserve Police Force personnel. Prasada Rao says that the defence forces prepare periodic reports on the issue, and treatment is better in the defence forces than anywhere else in the country.

HIV/AIDS, not too long ago concentrated in the cities, is leaking into the countryside, threatening a rural epidemic that India doesn't have the medical infrastructure to tackle. "Rural infections are increasing, and a rural epidemic is more daunting as the awareness levels are low, public health services are bad and the stigma is much more [than in the urban areas]," says Ashok Alexander, director of the Bill and Melinda Gates Foundation. Furthermore, recent World Health Organisation (WHO) findings in Delhi reveal a lax attitude to the vectoring of the HIV/AIDS virus through non-disposable syringes.

One of the biggest areas of concern is the spread of HIV/AIDS amongt women. Take the story of Sushma, a native of Haryana, whose husband died a year ago of AIDS. She had no idea why her husband was shrivelling up by the day. It was only at his deathbed that she was told what was killing her husband and the fact that he had passed on the virus to her.

Like Sushma, there are tens of thousands of women in "high-vulnerable" areas like Uttar Pradesh and Bihar who have been surreptitiously infected by wayward and errant husbands. In Bihar, AIDS is known as the "Bambaiya bimari" (a Mumbai disease caught and transported by infected truckers). Some researchers told Hardnews that the virus is sneaking into the middleclass and lower-middleclass families in eastern Uttar Pradesh. But the headquarters of the UP AIDS Control Society (SACS) in Lucknow doesn't suggest a high incidence in these parts.

The biggest threat to fighting HIV remains the apprehension within government agencies that India might run out of its stock of the critical anti-retroviral (ARV) drugs by April 2005. On World AIDS Day on December 1 this year, the Indian government shocked the health community by revealing that it had three months of ARV stock. So concerned was Prime Minister Manmohan Singh that he immediately asked the NACO boss to prepare a plan of action.

The crisis of AIDS medication has been exacerbated by problems that Indian pharmaceutical companies, such as Cipla, Ranbaxy and Dr Reddy Laboratories, are facing because of the coming into force of the WTO regime from January 2005. Once this new patent regime is operational, all drugs manufactured under the outgoing process patent regime will subjected to a penalty from international pharmaceutical majors that produce much of the world's ARVs. Cipla, which has spearheaded the movement to provide inexpensive medicines to AIDS patients in Africa by undercutting the international pharma giants, was recently debarred by the WHO for supplying substandard ARVs. (The proscription was later lifted.). NACO chief Quraishi told Hardnews that NACO was confident of providing ARVs to Indian patients even if it had to resort to global tendering. "We have the resources to buy medicines from abroad," he said.

Belying the end-of-stock scare, the government has been reiterating for years that NACO has never been short on resources. Some funding agencies have also accused NACO for sitting on a pile of funds provided by agencies such as the World Bank, the UK's Department for International Development (DFID), and the Melinda and Bill Gates Foundation. Says Dr Kenneth Wind Anderson, country coordinator, UNAIDS, "Even if you have the funds, the problem is that India doesn't have the competence or capacity to handle these things."

Then, mellowing, he says, "The fact is that India has other health problems, too, and prioritising them could be a problem." Even the Comptroller and Auditor General (CAG) report had raised objections to the manner in which NACO had gone about its affairs. Quraishi is, however, categorical that the frisson is no more than a small misunderstanding and that everything will be sorted out.

NACO has unveiled ambitious plans to ensure that the message of AIDS is taken all over the country. Quraishi believes that NACO can make a difference in three months. It has to. "We must not waste this window of opportunity," says Ashok Alexander. "We have to address AIDS on a war-footing right now, or else it'll be too late."

This report is supported by the Project for International Health Journalism Fellowship Program, a collaboration of the Henry J. Kaiser Foundation and the Bill & Melinda Gates Foundation

Unjustly damned

For the residents of Chochi, a nondescript hamlet in the Jhajjar district of Haryana, approximately 65 km from Delhi, AIDS is not the Acquired Immuno Deficiency Syndrome. It is a con, a trick played on the innocent, the illiterate and the poor by angrezi (English-speaking) doctors, media and NGOs.

It began in the summer of 1997, when a bus driver from the village, Ranbir Singh, went to Rohtak Medical College (RMC) for tuberculosis (TB) treatment. On the same day, after an ELISA test, he was declared HIV+ and turned out of the medical college. This was in violation of all norms prescribed by the National AIDS Control Organisation (NACO), which enforces a mandatory three-test norm and strictly prohibits denial of treatment and making public the name of an HIV+ person. Ranbir died in his village a day after he was evicted.

Dr D R Arora, head of the microbiology department at the RMC, forced Ranbir's wife and two daughters to also take an ELISA test. Ranbir’s wife, Kaushalya, and one daughter were also found HIV+. Arora communicated this to the local press. What made matters worse was the fact that before he came to the medical college, Ranbir was being treated by a village quack who used unsterilised needles on him and many others in the village. The village was put on a "watch list" and estimates were made that more than 70 people in the village could be HIV-infected.

Thus was born the first "AIDS village" in Haryana. The branding led to a social catastrophe, bringing a deluge of international AIDS activists and the media, and turning the villagers into outcastes virtually overnight. For years, no marriage was solemnised here, no outsider ate, smoked or even sat with the villagers, and there was no employment for Chochi's youth.

Worse was the fate of Ranbir's family. His parents, three brothers, wife and two daughters became "AIDS walon ka parivaar" (family of AIDS patients). Two of his brothers-in-law threatened to divorce his sisters. The engagement of his third sister, Guddi, was called off. The family was completely ostracised. Kaushalya was pregnant and since the doctors feared infection to her foetus,  she was forced to abort.

The ostracism, humiliation and harassment went on till, one day, Ranbir's father, Mange (70), decided to get Kaushalya and her daughters tested again. He hired a taxi and brought them to the All-India Institute of Medical Sciences (AIIMS), Delhi. AIIMS referred them to a laboratory where Kaushalya and her daughters were reported negative after three Western Blot tests on each of them. Mange went back and showed the report to his villagers, relatives and microbiologists of the Rohtak Medical College. All that Dr Arora has to say now is, "I have nothing to say on this. I retired long back."

Mange and his wife, Mula, are on the offensive now. "Ranbir's daughters were thrown out of the government school. The marriages of sons and daughters broke off and our agriculture is finished," Mula complains, tears of  rolling down her cheeks. She lines up Kaushalya and her daughters and says, "Do they look sick?" The village has joined the chorus for justice. "There was no AIDS case here. Yet, we were branded," former Chochi sarpanch Azad Singh says.

The village is demanding a judicial inquiry into the entire episode and damages from the district administration and Rohtak Medical College. Kaushalya filed a petition in the Supreme Court four months ago, seeking an inquiry into the tests, and compensation to her family. The Chochi episode seems to have put a question mark on the credibility of the ELISA test, which even otherwise is not considered foolproof.

"ELISA is a fragile test. The chances of a false positive are much higher than in any other test," alleges Purushothaman Mulloli, co-petititioner with Kaushalya in the case filed in the Supreme Court. Demanding replacement of the ELISA test with the Western Blot method, Mulloli claims that the estimated number of HIV+ released by NACO has no sanctity because it was calculated using the ELISA test.

— Narendra Kaushik

'Remove the stigma first'

Yes, it is possible to live a full life with AIDS — there is Shabana Patel to prove it in a country like India, many girls marry young and know very little about sexually-transmitted diseases (STDs) and how they can protect themselves. This ignorance has cost them a lot. Women and girls should be made aware of their sexual rights. Sex education should become part of the school curriculum, and people should learn that sex-related diseases are not divine punishment for corporeal acts.

At the same time, adequate care, support and treatment must be provided to infected people. Proper legislation to prevent discrimination against people suffering from HIV/AIDS is also imperative, as many children in schools, people at work and patients in hospitals face discrimination because of their HIV/AIDS status.

More steps need to be taken to make anti-retroviral (ARV) drugs easily available to people living with HIV/AIDS. The government has begun to provide ARV directly to HIV+ parents, children, and patients in government hospitals. The treatment has to be expanded because, currently, only 1,000 people of an estimated 5.1 million people living with HIV/AIDS in India have access to the treatment programme.

Shabana Patel, 27-years-old and HIV+, is an activist with the Positive People's Network. She was infected through her husband almost six years ago and continues to live life to the full. Excerpts from an interview to Hardnews:

How did you discover that you were HIV+?

My husband had taken an HIV test and found out that he was positive. So, his doctor contacted me and asked me to be tested as well. This was in 1998. The situation then was different, since not many people had heard of AIDS. I, too, was unaware of why I was being tested and for what. The doctor called my father and informed him that I had AIDS and that I would die within two months. My father hid the results from me — I found this out when I was rummaging through his papers. I was shocked and unprepared. Nobody counseleed me: I didn't know exactly what AIDS was. All I knew was that I had two months to live.

How did your family react to the news?

My family had not heard about AIDS and, therefore, did not treat me differently. Now, as more information is available, there is also misinformation. Stigma and discrimination continues to increase as more people become aware of AIDS. It is really important to spread the right kind of information about HIV.

Have you been discriminated against?

Yes. I went to a hospital for a routine medical check-up and was made to wait for hours because the staff was scared to test me. But I knew my rights and was able to assert myself, so they carried out my medical examination. Others, however, are not so fortunate — I have met women who are forced to leave their husband's house and live apart, eating and drinking alone. The HIV-infected are the new caste in India — the caste, especially, of poor married women.

How have you managed to cope?

Joining the Positive People's Network has made a big difference to my life. There, I was able to get counselling as well as begin my treatment. I now work for the network as a counsellor and believe that I have much to accomplish.

What is your message to the readers of this magazine?

HIV+ people are part of society and should not be discriminated against. It is just a medical condition. You cannot get AIDS if an HIV+ person touches you, hugs you, or eats and drinks with you. If we remove the stigma attached to this disease, more people will be willing to be tested and one of the greatest barriers in preventing further infection will be removed.

—    Yasmin Padamsee

Dead silence

When Subir, a north Kolkata youth, left for a job in Gujarat some years ago, his parents were happy. But that did not last long. He returned after a few years, HIV+. "Instead of receiving support, his elder brother reproached his mother for failing to bring him up properly," says a friend. "They stopped serving him tea at the local shop. Former friends and relatives turned away. Suddenly, he was alone."

Rina, a young woman from the North 24 Parganas district, was forced to leave her home because of her oppressive husband. Lured by the promise of a job in Delhi, she was befriended in central Kolkata and then sold into prostitution. She was later traced and brought back from Delhi's G B Road red light district a couple of years ago. By then, she was HIV+.

Not that these stories ended in tragedy so typical of AIDS-afflicted Indians. Subir and Rina have found a fresh impetus to start anew, largely through the efforts of a non-government organisation (NGO), the Calcutta Network of People living with HIV/AIDS (CNP). Today, they are spreading the message of hope among AIDS-affected people in the poorer pockets of Kolkata.

Encouraging as they are, these examples are hardly typical. Although AIDS has grown rapidly in India, social awareness is another matter. Pranay Dutta, who runs the NGO Sonata to help HIV/AIDS affected people, says, "For every one person helped by an NGO, at least 10 may be suffering silently." Even assessing the extent of the disease is not easy. State health department officials refuse to reveal how many cases have been reported in West Bengal.

As with everything in West Bengal, even the anti-AIDS initiative has a strong cultural content. Dutta, a composer, has released a number of cassettes and organised programmes to highlight the dangers of unprotected sex. He feels that the present day "liberal" mores have a lot to do with the growth of AIDS, which he insists is not a disease restricted to the helpless, uneducated poor.

"My work has brought me in touch with scores of obviously affluent people, who lived for only one thing: living life in the fast lane and letting the devil take the hindmost," he says. His songs and poems deal with the dangers of cheap thrills. Some top singers in Mumbai, such as Sadhna Sargam, have helped Dutta in his efforts.

West Bengal's districts don't fare much better than Kolkata, thanks to the construction of major highways and roads and the mushrooming of dhabas. There seems to be no official initiative to ensure that people use condoms or adopt other health measures before intercourse.

(Some names have been changed to protect identities)

— Ashish Biswas