For a war on many fronts

Spreading awareness about HIV/AIDS will go a long way in correcting the existing misconceptions and removing the stigma associated with the disease in India.

CHAMUNDESWARI, 23, is HIV-positive; so are her two children aged four and two. Her husband, Rajan, died last year at the young age of 26 of acquired immune deficiency syndrome (AIDS). Chamundeswari got infected by Rajan, who had tested positive for human immunodeficiency virus (HIV) even before marriage. Yet he got married as it gave him, and his family, social acceptability.

There are several thousand Chamundeswaris who have been "faithful" to their spouses and followed "abstinence" - touted by the Union government as the two most effective ways of stopping the spread of HIV/AIDS. What answer does the government have for these hapless women?

According to government estimates, women in apparent monogamous relationships account for an increasing number of new HIV infections. Over 92,000 HIV-positive women are giving birth to children each year, though not all of these babies are infected. Thus, the disease is spreading from small groups of high-risk people in a few States to the general population all over the country.

Over 10 per cent of the world's 42 million HIV/AIDS-infected people are said to be in India and of the five million people infected in 2002, over six lakh were reported to be in the country. Although the infection rate is less than 1 per cent of the adult population, India has the largest number of HIV-infected people - 4.58 million - after Africa. A sizable number of those infected are also in their prime productive age.

The prevalence of HIV/AIDS in India is estimated from data collected by the World Bank-funded National AIDS Control Organisation's (NACO) 455 sentinel sites, primary clinics and government hospitals. Sample data are collected from both high- and low-risk populations. The data from the low-risk antenatal care sites indicate the infection's spread to the general population.

How does HIV/AIDS spread? Generally, from high-risk behavioural groups, such as commercial sex workers, to a "bridge' population, such as their married clients, and from them to their spouses and to the children born to them.

The first few cases of HIV infection were detected in India in 1986 among sex workers in Chennai. By 1994, NACO had identified 1.75 million people infected with HIV, concentrated mainly in Maharashtra and Manipur. In four years, 3.5 million people had fallen victim to the infection, which continued to spread to more States. Today, NACO considers the infection to be concentrated in six States - Andhra Pradesh, Karnataka, Maharashtra, Manipur, Nagaland and Tamil Nadu - which account for over 80 per cent of all reported HIV/AIDS cases in the country. By mid-2003, Tamil Nadu had nearly half of the reported cases of AIDS in the country, followed by Maharashtra with over a fifth.

In India, the primary cause of the spread of HIV/AIDS is estimated to be sexual contact (85 per cent), followed by blood and blood products (2.7 per cent), transmission from mother to child (2.7 per cent), and needle-sharing among drug-users (2.4 per cent).

According to NACO's 2001 National Baseline General Population Behavioural Surveillance Survey, a study conducted nationally to understand the prevalence of HIV/AIDS awareness among the general population, over 70 per cent of the women in the rural areas had not heard of HIV and of those who had heard of it in Bihar, Gujarat and Uttar Pradesh, half of them did not know that HIV could spread through sexual contact. In rural Bihar, hardly 18 per cent of the women had heard of HIV or knew that it spread through sexual contact. Only two-thirds of the women in urban areas and half of the women in rural areas knew that the infection could be transmitted from mother to child. Hardly one-third of those surveyed had heard of sexually transmitted diseases (STDs) and among those who had, only one-fifth knew that it increased the risk of HIV infection. Following this survey, NACO set a goal of starting a voluntary, confidential, counselling centre in every district.

According to NACO, the stigma attached to HIV/AIDS is the greatest obstacle to spreading awareness about the disease. The discrimination against people with HIV/AIDS takes many forms - children are thrown out of schools, and adults from jobs; women are sent out of homes, denied healthcare, and some even stoned to death or buried alive. The HIV-infected are denied basic human rights. According to Meenakshi Datta Ghosh, NACO's project director, the stigma attached to the infection is primarily because the first cases identified in Chennai were among sex workers. That is why so much of the infection remains underground and it is difficult to get accurate numbers.

So, how does the government estimate the number of HIV-infected people? After the first cases of HIV were identified in 1986, India set up a high-level National AIDS Committee. The next five years were marked by a period of high denial - that HIV/AIDS is an imported disease and it cannot happen here. In 1992, recognising that HIV is a growing problem, the Union government set up NACO and began the first phase of the National AIDS Control Programme or NACP (1992-1999). In this phase, NACO promoted HIV/AIDS awareness and set up State-level programmes to fight its spread. Testing for HIV prevalence at sentinel sites (designated testing locations) began in 1994. But, realising that the spread was rapid, NACO began the second phase of the NACP (1999-2004) and raised the number of sentinel sites from 55 in 1994 to 455 by 2002. This phase involved the empowerment of State AIDS Control Societies, and greater involvement of local outfits such as non-governmental organisations (NGOs) and youth organisations. Surveys at the sentinel sites were first concentrated among the high-risk groups such as those with STDs, sex workers and needle-sharing drug users. Later, pregnant women in antenatal care centres - a low-risk group - were also screened for HIV. The numbers infected with HIV, according to the survey data, rose from 1.75 million in 1994 to 4.58 million in 2003.

According to Dr. Suniti Solomon, director of the Chennai-based YRG Care Centre, who first detected HIV infection in India, the number of HIV-infected has multiplied alarmingly. The centre provides treatment and care to 5,000 HIV-infected people. From one patient a week in the late 1980s, she now gets six to eight patients a day. If this is worrisome, her perception of the spread of the infection is shocking. She said in a recent newspaper interview: "For every one HIV-infected person reported, there are up to 20 that go unreported." Dr. Suniti attributes the following reasons for the rising number of HIV/AIDS cases in India: low perceptions of risk; lack of counselling and testing services; the stigma and discrimination attached to the disease; the absence of trained healthcare professionals; limited access to treatment; and poor treatment management regimes.

BUT many scientists and NGOs disagree with the numbers projected. The recent anti-HIV campaign, which involved visits to India by celebrity donors such as Microsoft chief Bill Gates (who has pledged a $200 million grant to deal with the HIV problem in India) and Hollywood actor Richard Gere got bogged down in controversy mainly because the projections about the numbers had a trace of exaggeration. For instance, the U.S. Central Intelligence Agency (CIA) made a projection last September that the number of HIV-infected people in India would reach 25 million by the end of the decade - a figure picked up by almost all international donors and agencies. The United Nations' Population Division projects the number of adult HIV-infected in India at 12 million by 2015 and the prevalence rate to reach 1.9 per cent by 2019. Although former Union Health Minister Shatrughan Sinha had agreed that the number of HIV-infected is rising and the six high-incidence States "do have a generalised epidemic", he said the figures were "grossly exaggerated". He condemned the projections made by the international agencies, saying "the figures put out by the government are from sentinel surveys and no one else is authorised to release figures or projections". But, as Richard Gere rightly responded, "figures are not the issue. The point is that there are a lot of people who are HIV-infected."

While the HIV/AIDS issue is a complex one its control needs a concerted effort from many angles and at different levels, there are some who feel that the disease is receiving much more attention than it deserves, especially when more common diseases do not receive such special treatment.

According to Ossie Fernandez of the Chennai-based Human Rights Foundation, huge amounts are coming into India to deal with HIV/AIDS from the World Bank, aid donors and philanthropic groups. Between 2000 and 2005, they have pledged over $620 million towards HIV/AIDS awareness, prevention and treatment projects for the four million HIV-infected (this itself, he argues, is an over-estimate). But some 58 million people in the country are infected with Hepatitis-B and Hepatitis-C and the funds available to deal with them are grossly inadequate. A mere $60 million is enough to vaccinate every child in the country against Hepatitis-B, but this is not forthcoming. He says: "No one is talking about it, or even about tuberculosis or malaria - the two main killer diseases." Ossie Fernandez says that the "projected numbers (for HIV/AIDS) are condom-industry driven, and pointed out that several NGOs here have been told by their international donors to add an HIV component to whatever work they do - primary education, livelihood or child labour issues".

Several senior scientists such as Prof. Sarman Singh, Head of Laboratory Medicine at the All India Institute of Medical Sciences in New Delhi, and Dr. Manu Kothari, former Head of the Anatomy Department at the King Edward Memorial Hospital in Mumbai, question the validity of the CIA figures. Says Prof. Sarman Singh: "The methodology adopted for statistical enumeration and evaluation of scientific details needs to be seriously investigated." Some NGOs such as the Human Rights Foundation are also questioning the way data are collected at the sentinel sites. Dr. A.K. Arun Kumar, spokesperson for the voluntary organisation Azadi Bachao Andolan, charged the CIA with trying to create panic among the people with exaggerated statistics. He accused the CIA of trying to build a market for multinational pharmaceuticals.

But there are others like Indira Kapoor, former South Asia director of the International Planned Parenthood Federation, who argues that if donors wanted to give money to India, there was no need to protest. She asks: "If Bill Gates' funding can help find an AIDS vaccine (for which trials are on in Pune), why should we oppose it?"

Agrees Dr. Madhu Bala Nath, South Asia director, International Planned Parenthood Federation. "We should not be caught up in numbers," she says. According to her, there are patterns in the data that get lost in the controversy over numbers. It is important to notice the sharp rise in HIV infection among injecting drug users, the youth, monogamous women and homosexual men. "Rather than localising programmes dealing with HIV, they need to be integrated into the country's main health programme and there is an urgent need to concentrate efforts outside the six high-prevalence States as well," she says.

BUT what is the government's attitude to dealing with HIV/AIDS? Says Health and Family Welfare Minister Sushma Swaraj: "I will prove all experts wrong. We are taking on the disease from all fronts." According to her, using condoms alone is not the answer to tackling the disease; the two most important things are "abstinence" (from unsafe sex) and "being faithful" (to the spouse). On her decision to take off air a condom advertisement, she says: "Ours is a moral society. While tackling AIDS, you (cannot) say you lead licentious lives because (you can make use) of condoms. I do not think that should be the message."

But says an NGO worker who did not wish to be named: "Who is to define morality? Sex is a private, individual decision. It is difficult to monitor it. The government can help by spreading awareness about the causes of the disease, making accessible healthcare and medicine, bringing HIV/AIDS into the public health agenda and developing an environment where people with HIV can live with dignity."

Said Mumbai-based Dr. Ishwar Gilada (who detected the first few HIV cases in Mumbai in 1986), in a recent television interview: "No one in the government is taking responsibility. Not one rupee is spent by it for HIV programmes." All the money spent on HIV in India, according to him, comes as international loans and grants. This has, in fact, affected the efficacy of the HIV/AIDS programme in the country.

A recent report, "Missing the Message - 20 years of learning from HIV/AIDS" by Panos, a London-based NGO, points out that the global trend of achieving quick, efficient and visible results has driven donors to fund shorter-term - usually three-year - projects. But in dealing with a problem like HIV/AIDS, where the infection has to be tackled from its roots, it is bound to take much longer to see some concrete results. Then comes the issue of spending. Most funds, according to the report, get used up in creating elaborate organisational structures rather than in addressing the needs of those affected. This slows the impact of government programmes.

Agreeing that India has been slow in tackling HIV/AIDS, Meenakshi Dutta Ghosh insists that things are changing now with the global public-private partnership called The Global Fund to Fight AIDS, Tuberculosis and Malaria announcing a $100-million grant to distribute anti-retroviral (ARV) drugs free in India. The global `3/5 initiative' promises to bring free ARV treatment to three million people by 2005 (that is why the initiative is called 3/5).

Says P. Kausalya, president, Positive Network of Women in Tamil Nadu: "Though ARV treatment costs have come down sharply - from Rs.30,000 a month in the early 1990s to Rs.1,200-1,500 a month today - still, it is beyond the reach of many. The 3/5 programme will benefit HIV-positive people greatly." Until now, ARV drugs are not administered in government hospitals because of its high cost and patients receive treatment only for opportunistic infections. Says K.K. Abraham of the Indian Network of Positive Persons: "There is a need to strengthen diagnostic facilities in all the districts, along with providing free ARV treatment."

ARV therapy, given to people whose viral load has crossed a certain limit, is known to delay the progression from HIV infection to AIDS and thus prolong and improve the quality of the patient's life. In India, free ARV treatment (under the 3/5 global initiative) is to be concentrated in the six States where the incidence of HIV is high.

According to Bimal Charles, Director of the Voluntary Health Services-AIDS Prevention and Control Project, free ARV treatment can significantly reduce mother-to-child transmission, one of the most disturbing ways HIV is spread. Says P. Kunanatham, the Chennai-based UNICEF (United Nations Children's Fund) consultant for the Prevention of Parent-to-Child Transmission: "This can help reduce the spread of the infection. For instance, in Tamil Nadu, 1.1 million women get pregnant every year. Of these, 16,000 are infected and they pass on the infection to at least 5,000 babies every year."

Although money is pouring into India to tackle HIV/AIDS, the country is nowhere close to beating AIDS, says a World Bank review on India's National AIDS Control Project that the Bank funds. According to the report, the 35 State AIDS Control Societies and 735 NGOs dealing with HIV/AIDS lack the basic resources to deal with the disease. About one-third of the jobs in State AIDS Control Societies remain unfilled. Many NGOs lack the technical skills to implement HIV/AIDS control programmes. And field data remain unsatisfactory because only 40 per cent of the groups designated for collection go to the field regularly and send information to the NACO computer database. The review also faults NACO for its "deficient" supervision of State projects and NGOs that work in the field.

NACO recognises that its project alone cannot beat AIDS. As Meenakshi Datta Ghosh says, "NACO-run project touches only the fringe of the problem." She feels that there is a need to co-opt the existing primary health centres to deal with HIV/AIDS in coordination with other disease control programmes, and to involve the business community.

The Bill and Melinda Gates Foundation, which has pledged $ 200 million in the next five years to fight HIV/AIDS in India, has a lot of plans. According to Ashok Alexander, the New Delhi-based director of the Foundation's India Aids initiative, plans are afoot to establish "good health" clinics for people with STDs. Many of the centres are to be located in the 9,000 petrol stations owned by the Gates Foundation partner, Indian Oil Corporation.

But, according to the Panos report, it is widely recognised that an important step in dealing with HIV/AIDS is to bring about behavioural changes. For that, people must realise that they are vulnerable to the infection and must have the urge to know more about it. This will take a long time to happen as for most people, education, employment, drinking water and nutrition assumes priority over HIV/AIDS.

That social and economic vulnerabilities lie at the root of commercial sex, population movement (cross-border and rural-urban migration) and trafficking that fuel HIV/AIDS is an accepted fact. Thus, all HIV/AIDS intervention programmes need to be addressed in the broader framework of poverty, inequity, literacy and gender imbalances. But, contrarily, most programmes are isolated and generally follow a top-down approach of information dissemination. There is no participation of communities in generating information geared to their needs; neither is there any programme involving all the stakeholders.

What is the way forward? AIDS is not an emergency, but a development crisis, emerging over a long period of time. It is important that the government neither panics nor remains complacent - it should take responsibility and act. Successful models, which address social and economic issues, to stop the spread of HIV/AIDS - such as those adopted in Uganda and Brazil - are instructive. Behavioural change, which will take long to happen, is fundamental to dealing with the problem.

Dr. Suniti Solomon strongly believes that women need to become the agents of change, though she realises that this is easier said than done. Dr. Suniti said at the recent Retroviruses Conference in Boston: "The world is changing fast. But men continue to dominate women, through patronisation, violence or mental coercion. To question the way our society is built is a good beginning in dealing with HIV/AIDS."