PROBLEMS OF HIV/ AIDS IN INDIA

PROBLEMS OF HIV/ 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 2.27 million people are currently living with HIV.
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.

The History of HIV/AIDS in India

At the beginning of 1986, despite over 20,000 reported AIDS cases worldwide,AIDS. 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: India had no reported cases of HIV or

“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.”

Later in the year, India’s first cases of HIV were diagnosed among sex workers 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 Chennai, Tamil Nadu.

In 1987 a National AIDS Control Programme was launched to co-ordinate national responses. Its activities covered surveillance, blood screening, and health education. 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, but at the end of the 1980s a rapid spread of HIV was observed among injecting drug users (IDUs) in Manipur, Mizoram and Nagaland - three north-eastern states of India bordering Myanmar (Burma).

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, the National AIDS Control Programme (NACP) for HIV prevention. This plan established the administrative and technical basis for programme management and also set up State AIDS Control Societies (SACS) 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.

A human daisy chain on World Aids Day in India, December 2004.

By this stage, cases of HIV infection had been reported in every state of the country. 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. 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.”

In 1999, the second phase of the National AIDS Control Programme (NACP II) came into effect with the stated aim of reducing the spread of HIV through promoting behaviour change. During this time, the prevention of mother-to-child transmission (PMTCT) programme and the provision of free antiretroviral treatment were implemented for the first time. In 2001, the government adopted the National AIDS Prevention and Control Policy and former Prime Minister Atal Bihari Vajpayee referred to HIV/AIDS as one of the most serious health challenges facing the country when he addressed parliament. Vajpayee also met the chief ministers of the six high-prevalence states to plan the implementation of strategies for HIV/AIDS prevention.

The third phase (NACP III) began in 2007, with the highest priority to reach 80 percent of high-risk groups including sex workers, men who have sex with men, and injecting drug users with targeted interventions. Targeted interventions are generally carried out by civil society or community organisations in partnership with the State AIDS Control Societies. They include outreach programmes focused on behaviour change through peer education, distribution of condoms and other risk reduction materials, treatment of sexually transmitted diseases, linkages to health services, as well as advocacy and training of local groups. The NACP III also seeks to decentralise the HIV effort to the most local level, i.e. districts, and engage more non governmental organisations in providing welfare services to those living with HIV/AIDS.

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.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 3.1 million people living with HIV.

In 2008 the figure was confirmed to be 2.31 million, which equates to a prevalence of 0.3%. While this may seem a low rate, because India's population is so large, it is third in the world in terms of greatest number of people living with HIV. With a population of around a billion, 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. In addition, NACO released figures in 2008 suggesting that the number of people living with HIV has declined from 2.73 million in 2002 to 2.27 million in 2008.

Some AIDS activists are doubtful that the situation is improving:

“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^.

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”

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

 
Map of India showing the worst affected states.

The vast size of India makes it difficult to examine the effects of HIV on the country as a whole. The majority of states within India have a higher population than most African countries, so a more detailed picture of the crisis can be gained by looking at each state individually.

The HIV prevalence data for most states is established through testing pregnant women at antenatal clinics. While this means that the data are only directly relevant to sexually active women, they still provide a reasonable indication as to the overall HIV prevalence of each area.

The following states have recorded the highest levels of HIV prevalence at antenatal and sexually transmitted disease (STD) clinics over recent years.

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% in 2007. This figure is smaller than the reported 1.26% in 2006, but remains the highest out of all states. men who have sex with men (MSM) (17%), followed by female sex workers (9.7%) and IDUs (3.7%). HIV prevalence at STD clinics was very high at 17% in 2007. Among high-risk groups, HIV prevalence was highest among

Goa

Goa, a popular tourist destination, is a very small state in the southwest of India (population 1.4 million). In 2007 HIV prevalence among antenatal and STD clinic attendees was 0.18% and 5.6% respectively.²⁹ The Goa State AIDS Control Society reported that in 2008, a record number of 26,737 people were tested for HIV, of which 1018 (3.81%) tested positive.³⁰

Karnataka

Karnataka, a diverse state in the southwest of India, has a population of around 53 million. HIV prevalence among antenatal clinic attendees exceeded 1% from 2003 to 2006, and dropped to 0.5% in 2007.³¹ 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.³² The average HIV prevalence among female sex workers in Karnataka was just over 5% in 2007, and 17.6% of men who have sex with men were found to be infected.

Maharashtra

Maharashtra is a very large state of three hundred thousand square kilometres, with a total population of around 97 million. The capital city of Maharashtra - Mumbai (Bombay) - is the most populous city in India, with around 14 million inhabitants. The HIV prevalence at antenatal clinics in Maharashtra was 0.5% in 2007.  At 18%, the state has the highest reported rates of HIV prevalence among female sex workers. Similarly high rates were found among injecting drug users (24%) and men who have sex with men (12%).

Tamil Nadu

With a population of over 66 million, Tamil Nadu is the seventh most populous state in India. Between 1995 and 1997 HIV prevalence among pregnant women tripled to around 1.25%.  The State Government subsequently set up an AIDS society, which aimed to focus on HIV prevention initiatives. A safe-sex campaign was launched, encouraging condom use and attacking the stigma and ignorance associated with HIV. Between 1996 and 1998 a survey showed that the number of men reporting high-risk sexual behaviour had decreased.

In 2007 HIV prevalence among antenatal clinic attendees was 0.25%. HIV prevalence among injecting drug users was 16.8%, third highest out of all reporting states. HIV prevalence among men who have sex with men and female sex workers was 6.6% and 4.68% respectively.

Manipur

Manipur is a small state of some 2.4 million people in northeast India. Manipur borders Myanmar (Burma), one of the world's largest producers of illicit opium. In the early 1980s drug use became popular in northeast India and it wasn't long before HIV was reported among injecting drug users in the region. Although NACO report a state-wise HIV prevalence of 17.9%  among IDUs, studies from different areas of the state find prevalence to be as high as 32%.

HIV is no longer confined to IDUs, but has spread further to the general population. HIV prevalence at antenatal clinics in Manipur exceeded 1% in recent years, but then declined to 0.75% in 2007. Estimated adult HIV prevalence is the highest out of all states, at 1.57%.

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. In recent years the average prevalence among this group has been much lower, at around 3-7%. HIV prevalence at antenatal clinics was 0.75% in 2007.

Nagaland

Nagaland is another small northeastern state where injecting drug use has again been the driving force behind the spread of HIV. In 2003 HIV prevalence among IDUs was 8.43%, but has since declined to 1.91% in 2007. HIV prevalence at antenatal clinics and STD clinics was 0.60% and 3.42% respectively in 2007.

The Punjab

The Punjab, a state in northern mainland India, has shown an increase in prevalence among injecting drug users (13.8% in 2007) in recent years. One of the richest cities in the Punjab, Ludhiana, has an HIV prevalence of 21% among IDUs while the HIV prevalence among IDUs in the capital of the state, Amritsar, has reached 30%. Denis Broun, head of UNAIDS in India has stated…"the problem of IDUs has been underestimated in mainland India, as most of the problem was thought to be in the northeast." 

Who is affected by HIV and AIDS in India?

People living with HIV in India come from incredibly diverse cultures and backgrounds. The vast majority of infections occur through heterosexual sex (80%), and is concentrated among high risk groups including sex workers, men who have sex with men, and injecting drug users as well as truck drivers and migrant workers. 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 (NACP-II), 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-play.

 
AIDS awareness banners in Sangli, India - 2005.The third stage of the National AIDS Control Programme (NACP-III), was launched in July 2007 and runs until 2012. The programme has a budget of around $2.6 billion, two thirds of which is for prevention and one sixth for treatment. 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. 

As part of its focus on prevention, the government has supported the installation of over 11,000 condom vending machines in colleges, road-side restaurants, stations, gas stations and hospitals. With support from the United States Agency for International Development (USAID), the government has also initiated a campaign called ‘Condom Bindas Bol!’ (Condom-Just say it!), 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.

In one unique scheme, health activists in West Bengal promoted 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." - 

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 called the 'Red Ribbon Express.' A year later the train journey was completed, having travelled to 180 stations in 24 states and reaching around 6.2 million people with HIV/AIDS education and awareness.⁵⁹ Following the success of the campaign, the 'Red Ribbon Express' took off again in December 2009, and now includes counseling and training services, HIV testing, treatment of sexually transmitted diseases (STDS) as well as HIV/AIDS education and awareness.

According to a mid-year report on the progress of the second round of the Red Ribbon Express, NACO estimates that 3.8 million people were reached in the first six months of the campaign. According to NACO the 'response has been overwhelming', with queues of people waiting to access the services a common sight, and follow up surveys indicating that knowledge of transmission routes of HIV and prevention methods have increased significantly in the areas visited by the train.

PMTCT

In 2004 only 5% of pregnant women living with HIV received antiretrovirals to prevent mother-to-child transmission. By 2007 this had risen to 14% but with such low coverage 21,000 children below the age of 15 are still infected every year through mother-to-child transmission in India. According to the National AIDS Control Organisation, only a third of all estimated HIV positive mothers were reached with PMTCT services in 2009.

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 hundreds of integrated counselling and testing centres (ICTCs) in India. By the end of 2009 there were 5135 ICTCs in India,⁶⁴⁶⁵ By 2009 these centres tested had tested 13.4 million people for HIV, an increase from 4 million in 2006. compared to just 62 in 1997.

Health Clinic near Sangli, India - 2005

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 and Andhra Pradesh the state governments proposed a bill in 2006 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. Neither of these plans have 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.⁶⁸ 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.

India has certainly made progress in expanding HIV testing to its large population. However, considering only 50% of those currently infected with HIV are aware of their status there is still significant work to be done in this area. 

Treatment for people living with HIV

Antiretroviral drugs (ARVs), which can significantly delay the progression from HIV to AIDS – have been available in developed countries since 1996. Unfortunately, as in many resource-poor areas, access to this treatment is limited in India; an estimated 300,000 adults (aged 15 and above) were receiving free ARVs by April 2010. This represents less than half of the adults estimated to be in need of antiretroviral treatment in India.

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; by November 2009 there were 266 reported sites providing antiretroviral therapy.

Increasing access to ARVs also means that an increasing number of people living with HIV in India are developing drug resistance. When HIV becomes resistant to the ARVs the treatment regimen needs to be changed to 'second-line' ARVs. As with many other parts of the world, second-line treatment in India is far more expensive than first-line treatment.

In 2008, NACO began to roll out government funded second-line antiretroviral treatment in two centres in Mumbai and Chennai. By 2009 second-line therapy was available in a total of eight states but treatment remains very limited. Of the 3,000 who need to be on second line treatment, about 970 were receiving it as of January 2010. One reason for this is expense; second line ARV drugs, unlike first line ARVs, are not produced on a large scale in India due to patent issues that control drug pricing and can be more than 10 times more expensive than first line ARVs. Another reason why coverage is so limited is the eligibility requirements imposed on second line ARVs; only those 'living below the poverty line, widows and children' and those who have received first-line ARVs from a government centre for at least two years are eligible.

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

To read about the challenges faced in increasing access to antiretroviral drugs around the world, see our Universal access to AIDS treatment 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 still misunderstood 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.

 
 A schoolteacher fired after testing HIV-positive is embraced by daughter

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, 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, Chennai^.

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 for many 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." - 

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. 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.⁸¹

Stigma is made worse by a lack of knowledge about AIDS. Although a high percentage of people have heard about HIV and AIDS in urban areas (94% of men and 83% of women) this is much lower in rural areas where only 77% of men and 50% of women have heard of HIV and AIDS. ⁸² However, the real challenge lies with ignorance about how HIV is transmitted - for example the majority of men and women in rural areas believe that AIDS can be transmitted by mosquito bites.⁸³ In 2009, NACO carried a population based survey in Nagaland, which showed that 72.8% of people believed HIV could be transmitted by sharing food with someone.

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

The future of HIV and AIDS in India

 
 HIV/AIDS information painted on a wall in Darjeeling, 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.⁸⁵ India's government responded by calling these figures completely inaccurate, and accused those who cited them of spreading panic. 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. 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.

HIV spending increased steadily in India from 2003 to 2007 but has since fallen.  In 2006-2007 $171 million was spent to contain and prevent the growth of HIV, which represented an increase of 28% from the previous year. This would put further strain on a struggling health sector which, on top of HIV and AIDS, faces a growing multitude of health challenges including malaria, diabetes, heart disease and cancer. Yet, in 2008-2009 spending on HIV/AIDS fell by 15% to $146 million.  Currently, India spends about 5% of its health budget on HIV and AIDS. However, the World Bank has warned that India will have to scale up prevention efforts in order to avoid spending more of its health budget in the future. According to the World Bank’s report, by 2020 India will have to spend 7% of its health budget on AIDS if the rising tide of the AIDS epidemic in New Delhi, Mumbai, the north and the north east is not halted.

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.