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Overview of HIV and AIDS in India

India is one of the largest and most populated countries in the world, with over one billion inhabitants. Of this number, it's estimated that around 2.4 million Indians are currently living with HIV. ¹

HIV emerged later in India than it did in many other countries. Infection rates soared throughout the 1990s, and today the epidemic affects all sectors of Indian society, not just the groups – such as sex workers and truck drivers – with which it was originally associated.

In a country where poverty, illiteracy and poor health are rife, the spread of HIV presents a daunting challenge.

“How do you talk about HIV/AIDS to someone who does not know the basics about health and hygiene?” - Ratna Gaekwad, outreach co-ordinator with the Delhi NGO Pratyatna ²

The History of HIV/AIDS in India

At the beginning of 1986, despite over 20,000 reported AIDS cases worldwide ³, India had no reported cases of HIV or AIDS.⁴ There was recognition, though, that this would not be the case for long, and concerns were raised about how India would cope once HIV and AIDS cases started to emerge. One report, published in a medical journal in January 1986, stated:

“Unlike developed countries, India lacks the scientific laboratories, research facilities, equipment, and medical personnel to deal with an AIDS epidemic. In addition, factors such as cultural taboos against discussion of sexual practices, poor coordination between local health authorities and their communities, widespread poverty and malnutrition, and a lack of capacity to test and store blood would severely hinder the ability of the Government to control AIDS if the disease did become widespread.” - ⁵

Later in the year, India’s first cases of HIV were diagnosed among sex workers in Chennai, Tamil Nadu. It was noted that contact with foreign visitors had played a role in initial infections among sex workers, and as HIV screening centres were set up across the country there were calls for visitors to be screened for HIV. Gradually, these calls subsided as more attention was paid to ensuring that HIV screening was carried out in blood banks. ^{6 7}

In 1987 a National AIDS Control Programme was launched to co-ordinate national responses. Its activities covered surveillance, blood screening, and health education. ⁸ By the end of 1987, out of 52,907 who had been tested, around 135 people were found to be HIV positive and 14 had AIDS. Most of these initial cases had occurred through heterosexual sex, ⁹ but at the end of the 1980s a rapid spread of HIV was observed among injecting drug users in Manipur, Mizoram and Nagaland - three north-eastern states of India bordering Myanmar (Burma). ¹⁰

At the beginning of the 1990s, as infection rates continued to rise, responses were strengthened. In 1992 the government set up NACO (the National AIDS Control Organisation), to oversee the formulation of policies, prevention work and control programmes relating to HIV and AIDS. ¹¹ In the same year, the government launched a Strategic Plan for HIV prevention. This plan established the administrative and technical basis for programme management and also set up State AIDS bodies in 25 states and 7 union territories. It was able to make a number of important improvements in HIV prevention such as improving blood safety. ¹²

By this stage, cases of HIV infection had been reported in every state of the country. ¹³ Throughout the 1990s, it was clear that although individual states and cities had separate epidemics, HIV had spread to the general population. Increasingly, cases of infection were observed among people that had previously been seen as ‘low-risk’, such as housewives and richer members of society. ¹⁴ In 1998, one author wrote:

“HIV infection is now common in India; exactly what the prevalence is, is not really known, but it can be stated without any fear of being wrong that infection is widespread… it is spreading rapidly into those segments that society in India does not recognise as being at risk. AIDS is coming out of the closet.” - ¹⁵

In 2001, the government adopted the National AIDS Prevention and Control Policy. During that year, Prime Minister Atal Bihari Vajpayee addressed parliament and referred to HIV/AIDS as one of the most serious health challenges facing the country. The Prime Minister also met the chief ministers of the six high-prevalence states to plan the implementation of strategies for HIV/AIDS prevention. ¹⁶

HIV had now spread extensively throughout the country. In 1990 there had been tens of thousands of people living with HIV in India; by 2000 this had risen to millions. ¹⁷

Current estimates

In 2006 UNAIDS estimated that there were 5.6 million people living with HIV in India, which indicated that there were more people with HIV in India than in any other country in the world. ¹⁸ However, NACO disputed this estimate, and claimed that the actual figure was lower. ¹⁹ In 2007, following the first survey of HIV among the general population, UNAIDS and NACO agreed on a new estimate – between 2 million and 3.6 million people living with HIV. The figure was confirmed to be 2.4 million in 2008. This puts India behind South Africa and Nigeria in numbers living with HIV.^20 21

In terms of AIDS cases, the most recent estimate comes from August 2006, at which stage the total number of AIDS cases reported to NACO was 124,995. Of this number, 29% were women, and 36% were under the age of 30. These figures are not accurate reflections of the actual situation though, as large numbers of AIDS cases go unreported. ²²

Overall, around 0.3% of India’s population is living with HIV. ²³ While this may seem a low rate, India’s population is vast, so the actual number of people living with HIV is remarkably high. There are so many people living in India that a mere 0.1% increase in HIV prevalence would increase the estimated number of people living with HIV by over half a million.

The national HIV prevalence rose dramatically in the early years of the epidemic, but a study released at the beginning of 2006 suggests that the HIV infection rate has recently fallen in southern India, the region that has been hit hardest by AIDS. ²⁴ In addition, NACO has released figures suggesting that the number of people living with HIV has declined. ²⁵

Researchers claim that this trend is the result of successful prevention campaigns, which have led to an increase in condom use.

Some AIDS activists are doubtful of the suggestion that the situation is improving, though:

“It is the reverse. All the NGOs I know have recorded increases in the number of people accepting help because of HIV. I am really worried that we are just burying our head in the sand over this.” - Anjali Gopalan, the Naz Foundation, Delhi ²⁶

Peter Piot, Executive Director of UNAIDS, stresses:

“the statement that India has the AIDS problem under control is not true. There is a decline in prevalence in some of the Southern states… In the rest of the county, there are no arguments to demonstrate that AIDS is under control” - ²⁷

For more detailed information on HIV prevalence and AIDS deaths, see our HIV and AIDS statistics for India.

The HIV/AIDS situation in different states

Andhra Pradesh

Andhra Pradesh in the southeast of the country has a total population of around 76 million, of whom 6 million live in or around the city of Hyderabad. The HIV prevalence at antenatal clinics was 1.26% in 2006 - higher than in any other state - while the general population prevalence was 0.97% in 2005-2006. The vast majority of infections in Andhra Pradesh are believed to result from sexual transmission. HIV prevalence at STD clinics was 24.4% in 2006.

Goa

Goa is a very small state in the southwest of India, and is best known as a tourist destination. Tourism is so prominent that the number of tourists almost equals the resident population, which is about 1.3 million. The HIV prevalence at antenatal clinics was found to be 0.50% in 2006. Prevalence at STD clinics was 8.6% in 2006, indicating that Goa has a serious epidemic of HIV among sexually active people.

Karnataka

Karnataka - a diverse state in the southwest of India - has a population of around 53 million. In Karnataka the average HIV prevalence at antenatal clinics has exceeded 1% in all recent years. Among the general population, 0.69% were found to be infected in 2005-2006. Districts with the highest prevalence tend to be located in and around Bangalore in the southern part of the state, or in northern Karnataka's "devadasi belt". Devadasi women are a group of women who have historically been dedicated to the service of gods. These days, this has evolved into sanctioned prostitution, and as a result many women from this part of the country are supplied to the sex trade in big cities such as Mumbai. ³⁰ The average HIV prevalence among female sex workers in Karnataka was 8.64% in 2006, and 19.20% of men who have sex with men were found to be infected.

Maharashtra

Mumbai (Bombay) is the capital city of Maharashtra state and is the most populous city in India, with around 20 million inhabitants. Maharashtra is a very large state of three hundred thousand square kilometres, with a total population of around 97 million. The HIV prevalence at antenatal clinics in Maharashtra was 0.75% in 2006, and surveys of female sex workers have found around 20% to be infected. Similarly high rates are found among injecting drug users and men who have sex with men. The 2005-2006 survey found an infection rate of 0.62% in the general population of Maharashtra. This state is home to around one in five of all people living with HIV in India.

Tamil Nadu

When surveillance systems in the southern Indian state of Tamil Nadu, home to some 62 million people, showed that HIV infection rates among pregnant women were rising - tripling to 1.25% between 1995 and 1997 - the State Government acted decisively. Funding for the Tamil Nadu State AIDS Control Society (TANSACS), which had been set up in 1994, was significantly increased. ³¹ Along with non-governmental organisations and other partners, TANSACS developed an active AIDS prevention campaign. This included hiring a leading international advertising agency to promote condom use for risky sex in a humorous way, without offending the many people who do not engage in risky behaviour. The campaign also attacked the ignorance and stigma associated with HIV infection. ³²

The HIV prevalence at antenatal clinics in Tamil Nadu was 0.25% in 2006, though several districts still have much higher rates. The general population survey of 2005-2006 found a rate of 0.34% across the state. Prevalence among injecting drug users was 24.20% in 2006 - the highest of all states and union territories.

Manipur

Manipur is a small state of some 2.2 million people in the northeast of India. The nearness of Manipur to Myanmar (Burma), and therefore to the Golden Triangle drug trail, has made it a major transit route for drug smuggling, with drugs easily available. HIV prevalence among injecting drug users is around 20%, and the virus is no longer confined to this group, but has spread further to the female sexual partners of drug users and their children. ³³ The HIV prevalence at antenatal clinics in Manipur has exceeded 1% in all recent years. The 2005-2006 survey found that 1.13% of the general population was infected - the highest of all states surveyed.

Mizoram

The small northeastern state of Mizoram has fewer than a million inhabitants. In 1998, an HIV epidemic took off quickly among the state's male injecting drug users, with some drug clinics registering HIV rates of more than 70% among their patients. ³⁴ In recent years the average prevalence among this group has been much lower, at around 3-7%. HIV prevalence at antenatal clinics was 1% in 2006.

Nagaland

Nagaland is another small northeastern state, with a population of two million, where injecting drug use has again been the driving force behind the spread of HIV. In 2006, the HIV prevalence at antenatal clinics was 0.93%, and the rate among female sex workers was 16.40%.

Who is affected by HIV and AIDS in India?

People living with HIV in India come from incredibly diverse backgrounds, cultures and lifestyles. The vast majority of infections occur through heterosexual sex, and most of those who become infected would not fall into the category of ‘high-risk groups’ - although members of such groups, including sex workers, men who have sex with men, truck drivers and migrant workers, do face a proportionately higher risk of infection. See our page on affected groups in India for more information.

HIV prevention

Educating people about HIV/AIDS and how it can be prevented is complicated in India, as a number of major languages and hundreds of different dialects are spoken within its population. This means that, although some HIV/AIDS prevention and education can be done at the national level, many of the efforts are best carried out at the state and local level.

Each state has its own AIDS Prevention and Control Society, which carries out local initiatives with guidance from NACO. Under the second stage of the government’s National AIDS Control Programme, which finished in March 2006, state AIDS control societies were granted funding for youth campaigns, blood safety checks, and HIV testing among other things. Various public platforms were used to raise awareness of the epidemic - concerts, radio dramas, a voluntary blood donation day and TV spots with a popular Indian film-star. Messages were also conveyed to young people through schools. Teachers and peer educators were trained to teach about the subject, and students were educated through active learning sessions, including debates and role-playing. ³⁵

The next stage of the National AIDS Control Programme will see US$2.5 billion spent on fighting HIV and AIDS, most of which will be spent on prevention. Aside from the government, this money will come from non-governmental organisations, companies, and international agencies, such as the World Bank and the Bill and Melinda Gates Foundation. ³⁶

The government has announced that this campaign will place a strong focus on condom promotion. It has already supported the installation of over 11,000 condom vending machines in colleges, road-side restaurants, stations, gas stations and hospitals, and plans to increase this number to 100,000 by the end of 2007. ³⁷ With support from the United States Agency for International Development (USAID), the government has also initiated a campaign called ‘Condom Bindas Bol!’, which involves advertising, public events and celebrity endorsements. It aims to break the taboo that currently surrounds condom use in India, and to persuade people that they should not be embarrassed to buy them. ³⁸

In one unique scheme, health activists in West Bengal are attempting to promote condom use through kite flying, which is popular before the state’s biggest festival, Durga Puja:

“The colourful kites carry the message that using a condom is a simple and instinctive act… they can fly high in the sky and land at distant places where we cannot reach.” ³⁹

This initiative is an example of how HIV prevention campaigns in India can be tailored to the situations of different states and areas. In doing so, they can make an important impact, particularly in rural areas where information is often lacking. Small-scale campaigns like this are often run or supported by non-governmental organisations, which play a vital role in preventing infections throughout India, particularly among high-risk groups. In some cases, members of these risk groups have formed their own organisations to respond to the epidemic.

The government has however funded a small number of national campaigns to spread awareness about HIV/AIDS to complement the local level initiatives.

On World AIDS Day 2007 India flagged off its largest national campaign to date, in the form of a seven-coach train. The train, which will visit 23 sates, stopping at over 180 stations, will offer education, counselling, an exhibition and symptomatic treatment ⁴⁰.

Testing

The general consensus among those fighting AIDS worldwide is that HIV testing should be carried out voluntarily, with the consent of the individual concerned. This view has been supported by the Indian government and NACO, who have helped to establish of hundreds of voluntary counselling and testing (VCT) centres in India. By the end of 2005 there were 873 VCT centres in India, compared to just 62 in 1997. ⁴¹ These centres tested 225,600 people for HIV during 2005. ⁴²

Although voluntary testing is officially supported in India, some states have tried to implement policies that would force people to be tested for HIV against their will. In Goa, the state government recently planned to make HIV tests compulsory before marriage, and in Punjab it has been proposed that all people wishing to obtain or retain a driver’s license should be tested for HIV. ⁴³ Neither of these plans has come to pass, but they have concerned activists, who argue that HIV testing should never be imposed on people against their wishes.

Unfortunately, cases of people being tested without their consent or knowledge are common in Indian hospitals. In one 2002 study, it was suggested that over 95% of patients listed for surgical procedures are tested against their will, often resulting in their surgery being cancelled. ⁴⁴ Hospital staff and health professionals, much like the rest of the Indian population, are often unaware of the facts about HIV. This leads to unnecessary fears and, in some cases, causes them to stigmatise HIV positive people and discriminate against them, including testing them without consent.

Treatment for people living with HIV

HAART – a form of treatment involving antiretroviral drugs (ARVs), which significantly delays the progression from HIV to AIDS – has been available in richer countries since 1996. Unfortunately, as in many poorer countries, access to this treatment is severely limited in India, with only about 95,000 people (less than 15% of those in need) receiving ARVs in India by the end of 2006. ⁴⁵ Some people manage to access the drugs through private health facilities, which dominate India’s healthcare sector, but the vast majority of people cannot afford to buy treatment privately.

While the coverage of treatment remains unacceptably low, improvements are being made. The government has started to expand access to ARVs in a number of areas, and the national number of ARV centres increased from 25 to around 70 in 2005 alone. ⁴⁶

In 2008, India’s National Aids Control Organisation (NACO) began to roll out government funded second-line antiretroviral treatment. Second line ARV’s are needed for people who’s HIV has become resistant to the effects of their medication, necessitating a change in their antiretroviral regime.

NACO’s initial one-year goal aims to provide second-line ART for the estimated 3,000 people in India who have become resistant to first-line drugs ⁴⁷. Although welcome news, NGO and charity workers have voiced concern over the small target number, stating that this figure only represents a tiny percentage of those in need of the drugs.

“Time is of the essence to save these lives, and NACO’s announcement, although long-awaited, is short on urgency and on the scale required.” - Chinkhola Thangsing, M.D., Asia pacific Bureau Chief for the AIDS Healthcare Foundation, based in New Delhi ⁴⁸

There are also plans to improve the provision of nevirapine to pregnant mothers with HIV, which can significantly reduce the risk that they will pass infection on to their child. It has been reported that, even where treatment to prevent mother-to-child-transmission is available, some women do not request it because of the stigma surrounding HIV. ⁴⁹

The large scale of India’s epidemic, the diversity of its spread, and the country’s lack of finances and resources all present barriers to India’s programme. Ironically, India is a major provider of cheap generic copies of ARVs to countries all over the world.

“It is a sad irony that India is one of the biggest producers of the drugs that have transformed the lives of people with AIDS in wealthy countries. But for millions of Indians, access to these medicines is a distant dream” - Joanne Csete, Director of the HIV/AIDS programme at Human Rights Watch. ⁵⁰

To read about the challenges faced in increasing access to antiretroviral drugs around the world, see our providing drug treatment for millions page.

Stigma and discrimination in India

In India, as elsewhere, AIDS is often seen as “someone else’s problem” – as something that affects people living on the margins of society, whose lifestyles are considered immoral. Even as it moves into the general population, the HIV epidemic is misunderstood and stigmatised among the Indian public. People living with HIV have faced violent attacks; been rejected by families, spouses and communities; been refused medical treatment; and even, in some reported cases, denied the last rites before they die. ⁵¹

As well as adding to the suffering of people living with HIV, this discrimination is hindering efforts to prevent new infections. While such strong reactions to HIV and AIDS exist, it is difficult to educate people about how they can avoid infection. AIDS outreach workers and peer-educators have reported harassment, ⁵² and in schools, teachers sometimes face negative reactions from the parents of children that they teach about AIDS:

“When I discussed with my mother about having an AIDS education program, she said, ‘you learn and come home and talk about it in the neighbourhood, they will kick you’. She feels that we should not talk about it.” - Female student, Chenna ⁵³

Discrimination is also alarmingly common in the health care sector. Negative attitudes from health care staff have generated anxiety and fear among many people living with HIV and AIDS. As a result, many keep their status secret. It is not surprising that among a majority of HIV positive people, AIDS-related fear and anxiety, and at times denial of their HIV status, can be traced to traumatic experiences in health care settings.

“There is an almost hysterical kind of fear ... at all levels, starting from the humblest, the sweeper or the ward boy, up to the heads of departments, which make them pathologically scared of having to deal with an HIV positive patient. Wherever they have an HIV patient, the responses are shameful.” ⁵⁴

A 2006 study found that 25% of people living with HIV in India had been refused medical treatment on the basis of their HIV-positive status. It also found strong evidence of stigma in the workplace, with 74% of employees not disclosing their status to their employees for fear of discrimination. Of the 26% who did disclose their status, 10% reported having faced prejudice as a result. ⁵⁵ People in marginalized groups - female sex workers, hijras (transgender) and gay men - are often stigmatised not only because of their HIV status, but also because they belong to socially excluded groups. ⁵⁶

To learn more about the way that prejudice is hindering the global fight against AIDS, see out Stigma and discrimination page.

The future of HIV and AIDS in India

Various groups have made predictions about the effect that AIDS will have on India and the rest of Asia in the future, and there has been a lot of dispute about the accuracy of these estimates. For instance, a 2002 report by the CIA's National Intelligence Council predicted 20 million to 25 million AIDS cases in India by 2010 - more than any other country in the world. ⁵⁷ India's government responded by calling these figures “completely inaccurate”, and accused those who cited them of “spreading panic”. ⁵⁸ The government has also disputed predictions that India’s epidemic is “on an African trajectory”, although it claims to acknowledge the seriousness of the crisis. ⁵⁹

Indeed, recent surveys do suggest that national HIV prevalence has probably fallen slightly in recent years. This trend is mainly due to a drop in infections in southern states; in other areas there has been no significant decline.

“In the north-east, the dual HIV epidemic driven by unsafe sex and injecting drug use is highly concerning. Moreover, there are many areas in the northern states where HIV is increasing, particularly among injecting drug users.” - Sujatha Rao, Director General of NACO ⁶⁰

Even if the country's epidemic does not match the severity of those in southern Africa, it is clear that HIV and AIDS will have a devastating effect on the lives of millions of Indians for many years to come. It is essential that effective action is taken to minimise this impact.

“The challenges India faces to overcome this epidemic are enormous. Yet India possesses in ample quantities all the resources needed to achieve universal access to HIV prevention and treatment… defeating AIDS will require a significant intensification of our efforts, in India, just as in the rest of the world” - Peter Piot, Director of UNAIDS.⁶¹

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• HIV and AIDS in other countries and regions around the world
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• The stigma and discrimination surrounding HIV and AIDS