Analysis file Atelier : Workshop on Mediation and Advocacy in the empowerment process.

Bangalore, November 2006

HIV and AIDS In India

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. 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.

Keywords: | India

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.

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.

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. NACO carries out India’s National AIDS Programme, which includes the formulation of policy, prevention and control programmes.

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.

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.

  • The Karnataka Scenario

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. Karnataka has a population of 52.7 million and is a diverse state in the southwest of India.

  • The groups most affected by HIV/AIDS

Although HIV/AIDS is still largely concentrated in at-risk populations, including commercial sex workers, migrant 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.

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.

The epidemic continues to shift towards women and young people. It has been estimated that 38% of adults living with HIV/AIDS as of the end of 2003 were women. In 2004, it was estimated that 22% of HIV cases in India were housewives with a single partner. 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.

Most 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.

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.

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.

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.

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.

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, and by NGOs rather than government bodies.

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.

However it is still debatable as to whether there is sufficient commitment to combating the epidemic at government level. 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.

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

Advocacy and Mediation Strategies to be discussed at the conference

  • Specific objectives :

    • 1. To establish effective linkages between rural and urban communities for addressing the issue of HIV/AIDS / STI and migration related issues.

    • 2. To build capacity of community by enhancing awareness levels, knowledge and motivation on HIV/AIDS / STI for effective functioning.

    • 3. To reduce the rate of HIV by promoting advocating safe sexual behaviour and attitudes within the context of overall health and hygiene.

    • 4. To reduce the risk of HIV transmission by advocating behavioural change.

    • 5. To advocate gender and sexual health issues within the context of HIV-AIDS proliferation among poor and marginalized communities.

    • 6. To develop information centres on HIV and offer support to the general public, high-risk groups, and HIV infected and affected population.

    • 7. To promote counselling, care, treatment and support facilities within the operational areas to people living with HIV/AIDS (PLWHAs) and their families.

    • 8. To address the issues of stigmatisation and discrimination against PLWHAs, and ensure their basic human rights.

    • 9. To initiate and enhance advocacy for PLWHA care including treatment access by networking with other action groups, the media and the public.

    • 10. To speak out about HIV-AIDS issues at every given opportunity at all available forums.

  • Stakeholders

    • 1. Men, women, their partners, and youth / adolescents

    • 2. The outreach educators who work directly with them

    • 3. PHCs, ANCs, doctors and staff, government hospitals, private doctors, ANMs, midwives in the operational areas

    • 4. Local interested organisations (CBOs / SHGs)

    • 5. Community leaders, politicians and bureaucrats, schoolteachers, traders, barbers, traditional healers, pharmacists, and religious leaders within the community.

    • 6. Corporate sector and NGOs

During our national conference we will invite those working with HIV-AIDS, to share their skills and experience with others. This will include government bodies, NGOs, corporate sector and health workers.

Translation