HIV and AIDS in India
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India has had a sharp increase in the estimated number of HIV infections, from a few thousand in the early 1990s to around 5.1 million children and adults living with HIV/AIDS in 2003. 1 With a population of over one billion, the HIV epidemics in India will have a major impact on the overall spread of HIV in Asia and the Pacific and indeed worldwide.
The spread of HIV within the country is as diverse as the societal patterns between its different regions, states and metropolitan areas. In fact, India's epidemic is made up of a number of epidemics, and in some places they occur within the same state. The epidemics vary from states with mainly heterosexual transmission of HIV, to some states where injecting drug use is the main route of HIV transmission. Both tracking the epidemic and implementing effective programs poses a serious challenge to the authorities and communities in India.
It would be easy to underestimate the challenge of HIV/AIDS in India. India has a large population and population density, low literacy levels and consequently low levels of awareness, and HIV/AIDS is one of the most challenging public health problems ever faced by the country. 2
"How do you talk to about HIV/AIDS to someone who does not know the basics about health and hygiene?" - Ratna Gaekwad, an outreach coordinator with the Delhi NGO Prayatna. 3
The Early Years of the Response to HIV/AIDS in India
The first case of HIV infection in India was diagnosed among commercial sex workers in Chennai, Tamil Nadu, in 1986. Soon after, a number of screening centres were established throughout the country. Initially the focus was on screening foreigners, especially foreign students. Gradually, the focus moved on to screening blood banks. By early 1987, efforts were made up to set up a national network of HIV screening centres in major urban areas. 4
A National AIDS Control Programme was launched in 1987 with the program activities covering surveillance, screening blood and blood products and health education. In 1992 the National AIDS Control Organization (NACO) was established. 5 NACO carries out India's National AIDS Programme, which includes the formulation of policy, prevention and control programmes.
The same year that NACO was established, the Government launched a Strategic Plan for HIV/AIDS prevention under the National AIDS Control Project. 6 The Project established the administrative and technical basis for programme management and also set up State AIDS bodies in 25 states and 7 union territories. The Project was able to make a number of important improvements in HIV prevention such as improving blood safety. 7
Number of people affected by HIV/AIDS in India
Current Estimates & Future Projections
Globally India is second only to South Africa in terms of the overall number of people living with the disease. 8
NACO estimated that there the number of Indians living with HIV increased by 500,000 in 2003 to 5.1 million. Around 38 percent of these people were women.
By the end of May 2005, the total number of AIDS cases reported in India was 109,349 of whom 31,982 were women. These data also indicated that 37% of reported AIDS cases were diagnosed among people under 30. Many more AIDS cases go unreported.
The UN Population Division projects that India's adult HIV prevalence will peak at 1.9% in 2019. The UN estimates there were 2.7 million AIDS deaths in India between 1980 and 2000. During 2000-15, the UN has projected 12.3 million AIDS deaths and 49.5 million deaths during 2015-50. 9
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. 10
HIV/AIDS surveillance
The number of HIV infections in India is difficult to determine. India's prevalence estimates are based solely on sentinel surveillance conducted at public sites. The country has no national information system to collect HIV testing information from the private sector, which provides 80% of health care in the country.
Although the HIV prevalence rate is low (0.9%), the overall number of people with HIV infection is very high according to estimates by UNAIDS. Given India's large population, with most of the Indian states having a population greater than a majority of the countries in Africa, a mere 0.1 percent increase in the prevalence rate would increase the number of adults living with HIV/AIDS by over half a million people. 11
HIV/AIDS orphans
Obtaining data on the number of children orphaned by AIDS is difficult. It is believed that the proportion of children in India orphaned by AIDS is far lower than in sub-Saharan Africa but because of India's huge population the actual number of children already orphaned by AIDS is very high. In 2001 the number of orphaned children was already estimated at 1.2 million. 12
Although children are not yet being orphaned by HIV/AIDS on a large scale in most cities, studies have shown that the problem of orphans in some urban slum areas of India is already severe. 13
The HIV/AIDS situation in different states
There are a number of states where the HIV prevalence in antenatal women is 1% or more, and these are considered to be high prevalence states. The prevalence rates are from data collected during screening of women attending antenatal clinics (ANC), meaning that these prevalence rates are only relevant to sexually active women. However, these rates can provide a reasonable estimate of HIV prevalence within the general population in each state. 14
Andhra Pradesh
Andhra Pradesh has one of the fastest increasing HIV/AIDS prevalence rates in India. In 2002 the ANC prevalence rate was 1.25% and NACO estimated that more than 400,000 people were living with HIV in Andhra Pradesh, the second highest number after Maharashtra state. This is 10% of the total HIV cases in India and ninety percent of the infections in the state occur through sexual transmission. 15 Andhra Pradesh is a Hindu state in the southeast of the country with a total population of 75.7 million.
Goa
Goa is in the southwest of India and is best known as a tourist destination. and tourism is so prominent that the number of tourists almost equals the population of the state which is 1.34 million. HIV infections have increased noticeably in Goa in the past couple of years. The ANC prevalence rate increased from 0.5% in 2001 to 1.38% in 2002.
Karnataka
In Karnataka the mean prevalence among ANCs was 1.13 in 2001 and 1.75 percent in 2002. In 2001 there were four districts with an ANC prevalence of 2 percent or more, and these are located in the southern part of the state, in and around Bangalore, on the border with Tamil Nadu, or in northern Karnataka's "devadasi belt." Devadasi women are a group of women, who historically, have been dedicated to the service of gods. These days, this has evolved into sanctioned prostitution- as a result many women from this part of the country are supplied to the sex trade in big cities such as Mumbai. 16 Karnataka has a population of 52.7 million and is a diverse state in the southwest of India.
Maharashtra & Mumbai
Mumbai (Bombay) is the capital city of Maharasthra state and is the second most populated city in India with a population of 16.4 million people. Maharastra is a very large state of three hundred thousand square kilometres and it has a total population of 96.8 million. The 2002 ANC prevalence rate for the state of Maharasthra was 1.25% and the prevalence for the city of Mumbai 0.75%.
Manipur
Manipur, a small state of 2.4 million people in the north east of India, has the highest concentration of HIV/AIDS infection in India. The geographical nearness of Manipur to Burma and therefore to the Golden Triangle drug trail, has made it a major transit route for drug smuggling, with drugs easily available. However, the transmission route of HIV/AIDS in the state is no longer confined to injecting drug users. It has spread further to the female sexual partners of IDUs and their children. 17 The ANC prevalence in Manipur in 2002 was 1.12% and among injecting drug users at three surveillance sites the HIV prevalence was an extremely high 39.06%.
Mizoram
In 1998, in the small north eastern state of Mizoram which has a population of less than a million, the epidemic took off quickly among male injecting drug users; with some drug clinics registering HIV rates of more than 70 percent among their patients. 18 In 2002, the ANC prevalence was 1.50%.
Nagaland
Another small north eastern state, with a population of two million, and where injecting drug use has again been the driving force behind the HIV epidemic. In 2002, the ANC prevalence was 1.25% and the HIV prevalence among injecting drug users was 10.28%.
Tamil Nadu
When surveillance systems in the southern Indian state of Tamil Nadu, home to some 60 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. It set up an AIDS society, which worked closely with non-governmental organizations (NGOs) and other partners to develop 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. 19
The ANC prevalence in Tamil Nadu was 0.88% in 2002, although an infection rate of 33.8 per cent was recorded at the one surveillance site for injecting drug users. By September 2003 Tamil Nadu had reported 24,667 cases of AIDS, the highest number reported to NACO by any state.
The groups most affected by HIV/AIDS
Although HIV/AIDS is still largely concentrated in at-risk populations, including commercial sex workers, injecting drug users, and truck drivers, the surveillance data suggests that the epidemic is moving beyond these groups in some regions and into the general population. It is also moving from urban to rural districts. 20
"In some parts of India, particularly the states that are reporting the higher prevalence, the tipping point is long past. I think there is absolutely no doubt that the virus is moving into the general population." - Dr. R. Feachem, executive director of the Global Fund to Fight AIDS, Tuberculosis & Malaria. 21
In July 2003, Dr. Meenakshi Datta Ghosh, project director for NACO, stated that HIV/AIDS no longer affects only high-risk groups or urban populations, but is
"gradually spreading into rural areas and the general population." 22
The epidemic continues to shift towards women and young people. It has been estimated that 38% of adults living with HIV/AIDS in India as of the end of 2003 were women. 23 In 2004, it was estimated that 22% of HIV cases in India were house wives with a single partner. 24 The increasing HIV prevalence among women can consequently be seen in the increase of mother to child transmission of HIV and paediatric HIV cases.
The majority of the reported AIDS cases have occurred in the sexually active and economically productive 15 to 44 age group. The predominant mode of HIV transmission is through heterosexual contact, the second most common mode being injecting drug use. Previously blood transfusion and blood product transfusion were also major causes, but blood safety measures are now in place to prevent such transmission.
The majority of the reported AIDS cases have occurred in the sexually active and economically productive 15 to 44 age group. The predominant mode of HIV transmission is through heterosexual contact, the second most common mode being injecting drug use. Previously blood transfusion and blood product transfusion were also major causes, but blood safety measures are now in place to prevent such transmission.
Migrants
Migration of economically productive sections of the population is a common phenomenon all over India. According to the 1993 National Sample Survey in India, 24.7% of the population had migrated, either within India, to neighbouring countries or overseas. Applying this percentage to the mid-2003 population 25 about 264 million Indians are mobile.
"Being mobile in an of itself is not a risk factor for HIV infection. It is the situations encountered and the behaviours possibly engaged in during mobility or migration that increase vulnerability and risk regarding HIV/AIDS." 26
Most of the migrant workers are highly mobile and often live in unhygienic conditions in urban slums. Long working hours, relative isolation from the family and geographical mobility may foster casual sexual relationships and make them highly vulnerable to STDs and HIV/AIDS. Migrant workers tend to have little access to HIV/STD information, voluntary counselling and testing and health services. Cultural and language barriers worsen their lack of access to such services as do exist. Returning or visiting migrants, many of who do not know their status, may infect their wives or other sex partners in the home community.
Sex workers
Although sex work is legal in some states, associated activities including soliciting and brothel keeping are penalised. Often women get involved with sex work because of poverty or marital break-up or they are forced into it.
Mumbai has the country's largest brothel based sex industry, with over 15,000 sex workers. 27 It is estimated that in the region of 70% of the sex workers in Mumbai are HIV-positive. Sex workers in Mumbai are controlled by madams, pimps and moneylenders and because of this, reaching sex workers with HIV prevention is a major challenge. 28 A study in Surat found that HIV prevalence among sex workers had increased from 17% in 1992 to 43% in 2000.
A positive outcome of a prevention program amongst sex workers can be found in Sonagachi, in central Kolkata (Calcutta). The education program initially targeted about 5,000 female sex workers. A team of two peer workers carried out outreach activities including education, condom promotion and follow-up of STI cases. When the project was launched in 1992, 27% of sex workers reported condom use. By 1995, this had risen to 82% and in 2001, it was 86%. 29
Injecting drug users (IDUs)
HIV infections among IDUs first appeared in Manipur. In Manipur City, the level of HIV infection increased from 61% in 1994 to 85% in 1997 and in 1998 it was 80.7%. Injecting drug use is also a major problem in urban areas such as Mumbai, Kolkata, Delhi and Chennai. 30
In India drugs are often used in open public places such as the roadside, parks, playgrounds and market complexes. Although India does not appear to have a widespread culture of professional injectors or 'street doctors', as in some Asian countries, there do appear to be shooting galleries where IDUs come to inject.
Generally, syringes and needles are purchased from pharmacies without any need for prescriptions, and although they are regarded as inexpensive many drug users tend to focus on buying the drug rather than purchasing new injecting equipment. The sharing of equipment among India's IDUs is widespread. Recent data indicate that most IDUs had at some stage shared their needle and syringe.
The majority of drug users in India are male. According to a study in the capital of Manipur, the prevalence of HIV infection in female IDUs was 57% compared to 20% among female non IDUs. 31 However, use of drug treatment data may underestimate the number of female drug users, with women addicts being predominately a hidden population. In the northeast of India, there are increasing numbers of young widows of addicts, many who are HIV-positive as a result of having been infected by their husbands. 32 With the reported increase of HIV infection among wives and children of IDUs, this is highlighting the crucial need to reach the sex partners of IDUs with prevention, education, care and support services.
There is no government policy for harm reduction, leading to a lack of coordination in designing and implementing interventions. Some states, such as Manipur, have adopted their own harm reduction policies and consider that:
"Harm reduction is the urgent, practicable and feasible HIV prevention method among Injecting Drug Users and their sex partners." 33
Truck drivers
India has one of the largest road networks in the world and an estimated 2 to 5 million long distance truck drivers and helpers. The extended periods of time that they spend away from their families place them in close proximity to "high-risk" sexual networks, and often results in them having an increased number of sexual contacts. 34
During their journeys the drivers often stop at 'dhabas', roadside hotels that usually provide food, rest, sex workers, alcohol and drugs. They pick up the women, use them and leave them at some other 'dhaba', where they are used by other drivers and local youths. As a result, truck drivers are crucial in spreading STDs and HIV infection throughout the country.
A study published in 1999 showed that 87% of the drivers had frequent and indiscriminate change of sexual partners, and only 11% of them used condoms although their AIDS knowledge was fairly good. 35 HIV prevalence patterns in truckers have tended to mirror the local epidemics.
"There is no entertainment. It is day-in-day-out driving...When they stop, they drink, dine and have sex with women. Then they transfer HIV from urban to rural settings." 36
There have been a number of major HIV/STI prevention projects aimed at truckers. Some of these projects include not just truckers, but also other stakeholders such as gas station owners and employees. A specific example from Mumbai is the AIDS Workplace Awareness campaign which is mandatory and which targets the drivers at the regional transport authority, where the drivers get their licenses renewed annual. 37
Stigma and discrimination in India
In India, as elsewhere, AIDS is perceived as a disease of "others" - of people living on the margins of society, whose lifestyles are considered 'perverted' and 'sinful'. Discrimination, stigmatisation and denial are the outcomes of such values, affecting life in families, communities, workplaces, schools and health care settings. Because of HIV/AIDS related discrimination, appropriate policies and models of good practice remain underdeveloped. People living with HIV and AIDS continue to be burdened by poor care and inadequate services, whilst those with the power to help do little to make the situation better.
In India the social reactions to people with AIDS have been overwhelmingly negative. For example, in one study 36% of people felt it would be better if infected people killed themselves, the same percentage believed that infected people deserved their fate. Also, 34% said they would not associate with people with AIDS, and one fifth stated that AIDS was a punishment from God. 38
The health care sector has generally been the most conspicuous context for HIV/AIDS related discrimination, stigma and denial. 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, fearing still worse treatment from others. 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." 39
Other examples of discrimination are children of HIV-positive parents, whether positive or negative themselves, being denied the right to go to school or being separated from other children. Whilst women are often blamed by their parents and in-laws for infecting their husbands, or for not controlling their partners' urges to have sex with other women. People in marginalized groups (female sex workers, hijras (transgendered) and gay men) are often stigmatised on the grounds not only of their HIV status but also being members of socially excluded groups.
Stigma is also affecting prevention efforts, with the harassment of AIDS outreach workers and peer - educators being reported in 2002. Although the Indian government encourages NGOs to provide condoms and AIDS education to high-risk groups such as sex workers and men who have sex with men, it seemingly allows law enforcement agencies to harass outreach workers who provide those services. 40
National Prevention Efforts
Educating people about HIV/AIDS and prevention is complicated as India has many major languages and hundreds of different dialects. So 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.
With the second phase of the National AIDS Control Program (1999-2004), NACO has expanded its program. NACO provides funds to state AIDS control societies for targeted interventions, blood safety, youth campaigns, VCT, care and support and social mobilisation. The second phase of the program aims to promote cooperation among public, private and voluntary sectors.
NACO sponsored prevention efforts have included concerts, TV spots with a popular Indian film-star, radio drama, radio programme and organising a voluntary blood donation day. School AIDS education programme in India include training teachers and peer educator among students, role-playing, debates and discussions. The programme has worked towards student youth to raise awareness levels, help young people to resist peer pressure and develop a safe and responsible life-style.
In 2001, the government adopted the National AIDS Prevention and Control Policy. During that year, Prime Minister 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 implementation of strategies for HIV/AIDS prevention.
However it is still debatable as to whether there is sufficient commitment to combating the epidemic at government level. 41 Many Indians in positions of power refuse to accept that their country faces a grave threat from the epidemic. And as the epidemic spreads, the battle against AIDS is mired by a lack of consensus on the extent of the pandemic, the "right strategy" to combat it, and how to deal frankly with sexuality. 42
In early 2003 the Indian Health Minister Sushma Swaraj told the press that the country's AIDS program had to focus on sexual abstinence and faith rather than just condoms. But according to Peter Piot of UNAIDS:
"In order to prevent the spread of HIV, a combination approach is required. We need to promote abstinence, delay of sex, faithfulness and the use of condoms. No single approach will work." - Peter Piot. 43
Many people have been disappointed with the allocation of only $38.8 million of the government's own funds over the period of 1999-2004. The government has also been criticised of poor ability in implementing HIV/AIDS programs and inadequate efforts with injecting drug users and men who have sex with men.
The Indian government is also criticized for clinging to the idea that the epidemic is limited to "high risk groups", such as sex workers, drug users and truck drivers, and that targeting them is the best strategy to contain the epidemic further. But this approach no longer reflects the reality of at least some Indian states, where the epidemic is in the general population. In these states women who only have sex with their husbands may be the group at highest risk of HIV transmission, and although in Indian society men can experiment with sex outside of marriage, women do not have the status to demand condom use of their husbands. 44
Voluntary testing and counselling (VCT)
NACO has developed a VCT policy that states that "no individual should be made to undergo mandatory testing for HIV" and that "no mandatory testing should be imposed as a precondition for employment or for provision of health care facilities during employment" (India's armed forces are exempt from this condition) 45 . NACO has also developed guidelines for VCT centres, which deal with consent and confidentiality issues. 46
However, many Indians are tested for HIV without their consent or knowledge. It has been reported that over 95% of patients listed for surgical procedures are involuntary tested for HIV; for those who test positive, their treatment/surgery is cancelled. 47 Another issue for anyone undergoing an HIV test is that his or her test will in most instances be neither anonymous nor confidential. 48 Some Government officials (inc. legislators in Goa and Andhra Pradesh) have even voiced their support of mandatory premarital testing for HIV and are proposing related legislation. 49
Care and support of people living with HIV/AIDS
Since the launch of the second phase of the National AIDS Control Program in 1999, the Indian government has established 25 community HIV/AIDS care centres across the country. But the standard of care that NACO supports is limited to the provision of drugs for the treatment of opportunistic infections. And the distribution of these drugs is limited to those institutions that qualify through a NACO state-level selection process. Many people living with HIV only have access to centres not selected to receive drugs, so cannot have access to treatment for most opportunistic infections. 50 Just as importantly, a major obstacle to the provision of care for HIV positive people, is the stigma surrounding the disease as described earlier.
With regard to antiretroviral drugs, India is a major producer of cheap generic copies of many HIV/AIDS drugs that are being sold to many countries all over the world. Despite that antiretroviral drugs are affordable to a tiny fraction of people in need of treatment in India. 51
"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. 52
In December 2003, the Indian Health Minister Sushma Swaraj announced that more than $40 million would be allocated from April 2004 to provide antiretroviral drugs in government run hospitals. The first projects will be in the worst-affected states: Karnataka, Maharashtra, Tamil Nadu, Manipur and Nagaland. 53
The Way Forward
There needs to be political leadership, and there needs to be effective action taken in respect of all aspects of the epidemic.
"At recent meetings in India, I heard great speeches, but as for action, zero." - Peter Piot, Director UNAIDS. 54
For more information about HIV/AIDS in India see our HIV and AIDS Statistics for India .
Sources
This page has been written and edited by Jenni Fredriksson-Bass and Annabel Kanabus
The main sources include:
Ekstrand Maria, Garbus Lisa and Marseille Elliot (2003) 'HIV/AIDS in India', AIDS Research Institute: AIDS Policy Research Center, University of California, San Franciso, August. http://ari.ucsf.edu/ari/policy/countries.htm
National AIDS Control Organization NACO (2003) 'HIV/AIDS Surveillance in India'
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Last updated August 12, 2005
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