The increasing number of women with HIV/AIDS in India, most of them not from groups traditionally considered high risk, has presented government and NGOs with a new challenge. Manjima Bhattacharjya explains
Till the last decade, HIV/AIDS education, awareness, and intervention programmes had disproportionately targeted ‘high risk’ groups that were seen to have a greater propensity to contract the disease because of their sexually risky behaviour. This included, among men, truck drivers, migrant workers, and gay men, and among women, commercial sex workers. Yet, at the turn of the century, another picture was beginning to emerge that compelled the world to sit up and take note.
Globally, numbers showed that more women were living with HIV than ever before. The proportion of women versus men who were HIV-positive had been steadily rising - from 41% in 1997 to almost 50% in 2002; in absolute numbers, there was an increase in women living with HIV by 1 million between 2004 and 2006. This rise was noted in almost every region of the world: in the USA, the number of women living with AIDS increased 15% between 1999 and 2003, compared with 1% in men. In Russia, more than 40% of newly reported HIV infections in 2005 were among women, a larger proportion than ever before1. Similar trends were reported across Africa and China.
India too mirrored this global trend. According to the government’s National AIDS Control Organisation (NACO), in 2007, of the estimated 2.5 million people living with HIV in India around 1 million (or around 40%) are women. In 2003, NACO reported that out of the 5.2 million people infected with AIDS in India, 2 million (or 38%) were women.
Although the published estimates of previous years are not comparable with the latest figures because the data for 2007 has been arrived at through different methodologies as compared to 2003 data (and is in fact currently in the midst of some controversy), it does show a trend of rising prevalence for women and a shift in the male-female proportion of people infected with HIV.
Speaking at the release of the third National AIDS Control Programme (NACP-III) the director general of NACO noted that while the HIV epidemic in India continued to be largely concentrated in the high-risk groups, there was evidence that more women were being infected and that the epidemic was spreading to rural areas. A report by the Planning Commission in preparation for the Eleventh Plan also noted the increasing feminisation of the AIDS burden in India.
The risk of marriage
Other startling revelations were to follow. A 2005 UNFPA study showed that more than four-fifths of new infections in women worldwide result from sex with their husbands or primary partners. Although they were still a high-risk group, sex workers constituted only 1% of the female population with AIDS in India; of the rest, most women had been infected by their husbands. In fact, it was noted that more than 90% of women infected with HIV in India were married and monogamous.
The overall lower status of women and the power imbalances in gender relations often means that women are unable to negotiate for safe sex (especially within marriage) or even refuse unwanted sex. Women also face sexual exploitation and violence, even at very young ages, and in cultural settings like India, rarely had sufficient knowledge about sexual health or about HIV to actively prevent infection. All women are at risk, with the category of ‘married women’ (till now hardly considered to be a category ‘at risk’) being seen in a new light. The earlier wisdom that had placed the spotlight on high risk groups had so far left this constituency literally in the dark.
These observations have led to a new turn in the AIDS discourse whereby the spotlight has shifted to women overall as a vulnerable group. It has reiterated what former UN Secretary General Kofi Annan had articulated as early as 2003, that “today, AIDS has a woman’s face”.
Special vulnerabilities of women
Women are vulnerable to HIV in a range of ways that are distinct from men. To begin with, the physiological susceptibility to HIV infection in women is estimated to be at least two and a half times higher than in men due to the greater mucosal surface area of the vagina that is exposed during heterosexual intercourse, combined with the fact that semen has a higher concentration of HIV than vaginal fluid. This biological vulnerability is greater in younger women who have sex at an early age, as the risk of infection in adolescent young women is higher. In the Indian context, cultural practices such as the prevalence of child marriages, early marriages, as well as forced marriages, increases the risk.
Other socio-cultural norms further compound these vulnerabilities. Cultural taboos around matters related to sex and sexuality mean women are usually less informed or ignorant of the ways of HIV transmission and prevention. According to the National Family Health Survey, only 5% of Indian women have comprehensive knowledge about ways of preventing HIV/ AIDS. A study by some women’s groups across the country in collaboration with UNIFEM found that a majority of the women respondents stated that they had no knowledge of sex-related issues until they got married. Many got to know of HIV only after being infected. Sexual violence, exploitation, child sexual abuse and trafficking of women and children are other gendered experiences that women and girls face in their life cycle that increase their vulnerability to HIV.
Women also experience the impact of having HIV/AIDS differently. Life stories of women living with HIV and various research studies (including the study by UNIFEM and women’s groups mentioned above) demonstrate that women are being discriminated against in new ways and facing a new set of human rights violations as a result of their HIV status - such as being blamed for their husband’s infection, beatings and torture, neglect and discrimination within the home, denial of their inheritance and property rights, having their children taken away from them, lack of access to health care or legal support, desertion by marital and natal family, especially after the death of an HIV positive husband and the overwhelming impact of stigma.
Stigma in particular has repeatedly emerged as the single most debilitating impact of HIV/AIDS across the world, perceived as it is to be a disease of the immoral. For women, though, the stigma is magnified because of the sexual connotations of the disease and the implications of that for women, which leads to assumptions about their morals, and immediate social ostracism along with a very real threat of violence and discrimination because of this. It is often said that if AIDS doesn’t kill a woman, stigma will.
Access to health care
Women also have less access to health care than men. Usually, women are seen to be the primary care-providers, and family resources are put into supporting health care more often for the man than for the woman. According to traditional gender roles, women are only supposed to care for the sick, not fall sick themselves. It is a telling fact that even though nearly 40% of people living with HIV in India are women, only 25% of beds in AIDS care centres are occupied by women.
In general, women in India of all income groups have lower levels than men do of nutrition and access to adequate and healthy food. Their financial dependence on the family also contributes to the fact that women do not, or cannot, seek healthcare support for HIV and related illnesses. Moreover, part of having HIV for women means repeated vaginal yeast infections and reproductive tract illnesses that are anyway surrounded by ignorance, shame and other taboos. To seek help for this aspect of HIV – even to share it with someone else - is difficult in their cultural context, as a result of which women with HIV live with recurring physical pain and sickness. Studies show that HIV positive women are more likely to suffer from depression than women who are HIV negative.
The role of women as care-providers also makes them vulnerable to other kinds of exploitation, and puts other burdens on them. There have been innumerable instances of HIV-positive men (called ‘HIV crooks’) marrying women without informing them of their HIV status, in order to have someone to care for them in their illness.
Role as mothers
Both the State and society have shown some anxiety about one particular aspect of women’s relationship with HIV: their role as mothers. Should women with HIV be mothers? While all women have a right to choose whether and when they would like to have a child, this right of women with HIV (and also sex workers) has often come into question. There are certain problematic moralistic issues underlying these, as a result of which the attitude is different towards pregnant women unaware of their HIV status at the time of conception (and therefore their having children is unfortunate but justified) vis-a-vis women who want to have a child knowing their sero-status. The latter often face additional discrimination for being selfish in their desire to have a child who could be infected with HIV.
The focus on prevention of mother-to-child transmission programmes and evidence of its success (that is, of HIV infected mothers giving birth to HIV-negative children, with intervention from the programme) have made such arguments less important.
Coercion and confidentiality
At the same time, there is an element of coercion within the State’s concern for pregnant women which threatens to add to the violations experienced by women. There is the ethical issue of forced screening for HIV as well as forced administration of antiretroviral therapy (ART) to prevent maternal-foetal transmission of HIV. Health activists have been critical of the way in which many government hospitals manipulate ‘informed consent’ by making women coming to antenatal clinics sign or put thumb prints on a consent form, saying it is standard procedure. This is not followed by the process of referral for testing and counselling, that would provide adequate information to help women decide if they would like to be tested or be part of the programme. Experiences from other parts of the world too (like Africa) have led health workers to suggest that governments should devise strategies that increase the comprehension of people so that they can actually exercise ‘informed consent’.
There are also concerns about the confidentiality of such tests, and how careless handling of results, especially for positive and false positives, often lead to stigmatisation of the woman being tested.
Another ethical issue is that of clinical trials of vaccines, microbicides and so on, and the danger of women, especially poor, marginalised women, being only partially informed about the implications of the trial, and misinformed or coerced into participating in these trials. These fears are not unfounded, based as they are on a history of women’s bodies being used for testing of various contraceptive methods in the past.
Gender inequality and HIV
Women with HIV have special needs – as women, as mothers and potential mothers, as patients who have long been neglected by their families and the healthcare system, as care-givers who are balancing their own illness with many other tasks in everyday life, and as women who carry the burden of stigma and face its impact every single day.
All these observations made over the last decade brought out the links between gender inequality and the spread of HIV. It brought home the message that the empowerment of women was critical to effectively stemming the HIV/AIDS epidemic. This paved the way for an evolving set of responses from State and non-State actors including the medical establishment, media and AIDS activists.
Responses from State and non-State actors
In the national budget for 2007-2008, Rs 720 crore has been allocated for the National Aids Control Programme (NACP), the official programme of the Indian government set up under the Ministry of Health and Family Welfare two decades ago.
The programme has been scaled up considerably over the years. The third NACP, a six-year plan from 2007 to 2012, was borne out of a complex consultative process with state programmes, experts on the issue, people living with HIV and AIDS, high risk groups, NGOs and international groups. It seeks to halt and reverse the trend of the epidemic in this phase. NACP-III has four basic strategies:
- preventing new infections in high risk groups and general population
- providing greater care, support and treatment to people with HIV and AIDS
- strengthening the infrastructure systems
- strengthening the nationwide Strategic Information Management System.
The director general of NACO has pointed out that NACP- III will address the new trend of women being amongst those increasingly infected, and the spread of the epidemic to rural areas.
In past plans, too, women have been targeted in various ways, although pregnant women and sex workers have been the focus of most of the interventions. For example, one of the priority categories of recipients of free antiretroviral therapy (ART) after the government initiated a free ART programme in government hospitals in the six high prevalence states in 2004 were HIV- positive women who accessed government antenatal clinics. Other priority categories were children under 15 years of age and adults with ‘full blown AIDS’.
The Prevention of Parent to Child Transmission of HIV/AIDS (PPTCT) programme started in 2002, is also an important part of the previous and current NACP. The programme involves counselling and testing of pregnant women in Integrated Counselling and Testing Centres (ICTCs), after which, pregnant women found to be HIV-positive are given a single dose of the drug Nevirapine at the time of labour. Their newborn babies also get a single dose of Nevirapine immediately after birth.
While the programme is ambitious on paper, in practice there are issues with the actual implementation of the programme. Data from 2005 shows that the number of pregnant women counselled at PMTCT centres was 891,912 that year, of which the number of pregnant women infected with HIV was 130,000. Out of these, the number of HIV-infected pregnant women who actually received ARVs for PMTCT were only 2279, barely two per cent of the total number of HIV-positive pregnant women.
Another response from the State to the trend of women being infected by their husbands has been the proposal in three states (Goa, Andhra Pradesh and Karnataka) to make pre-marital testing for HIV mandatory. This has been controversial. While the aim of the state governments has been to protect women from being tricked into marriage with HIV infected men, such legislation contradicts the national NACO policy of encouraging voluntary testing. It also does not address the issue of how married women can be protected from getting infected by their husbands after marriage. AIDS activists and women’s groups have called the proposal a knee-jerk response that is based on a misunderstanding of the problem. They have also cautioned that such measures may harm women who may be stigmatised by their families if found to be positive or false positive.
The HIV/AIDS Bill 2007, a comprehensive HIV legislation prepared for the government by the Lawyer’s Collective HIV/AIDS Unit after a three-year consulting and drafting process recognises the special vulnerabilities of women to HIV and makes special provisions for them. The main suggestions made in the bill are:
- Registration of marriages to stem forced or child marriages
- Provision of maintenance for women infected by their husbands and deserted
- Right of residence for HIV-positive women
- The right of pregnant HIV-positive women to proper counselling and treatment option
- Setting up sexual assault crisis centres in recognition of the link between sexual violence and HIV.
Messages in the media
The media is a prominant part of the AIDS discourse. Every year millions of rupees go into public service advertisements and media campaigns aimed at bringing about behavioural change and responsible sexual behaviour. The changing focus of these messages over the years reflects the changing concerns.
Two decades ago, messages were aimed at raising awareness about how AIDS is transmitted and they did so by creating fear through messages such as ‘AIDS kills’. In the next phase, most messages aimed at prevention by promoting condom usage, targeted mostly at young men, encouraging them to overcome the embarrassment of using the ‘C’ word with friends or chemists. Some advertisements also aimed at dispelling myths around HIV (‘AIDS is not contagious’). In the last few years, the messages speak to women of all classes, alerting them to the fact that all women are ‘at risk’, and encouraging them to ask their partners or husbands to use condoms.
Other advertisements show people living with HIV in an effort to break various myths and stereotypes around people with AIDS and connect with them at a human level. Messages have also addressed pregnant women, encouraging them to test for HIV and prevent transmission to the child if found positive. They also began promoting responsible male behaviour and a new masculinity that respected women’s right to know about HIV status, participated in parenting or caring for mother and child, and ensuring that they were tested for HIV. Young people have also been the target of these messages.
Have these messages really worked? There is evidence of increased awareness of some aspects of AIDS. However activists who work on the ground question the disproportionate use of resources to spread information when what is needed is treatment and care for those affected with HIV. These messages in the media are unlikely to have a direct impact but serve to place these ideas in the public domain. It is long term changes in gender relations that will empower women to refuse or demand safe sex. While increased use of condoms has had some role to play in reducing the rate of infection among sex workers in some places, it is not a strategy that will work for women in general and married women in particular.
Methods of prevention
Recognising this, there is now attention being given to woman-controlled methods of protection, or those that do not depend on cooperation from partners or husbands. Therefore, from a highly condom-centric approach to AIDS prevention, we now increasingly hear about the possibility of female condoms and microbicides as methods of protection against AIDS that are controlled by women themselves, and not necessarily with the knowledge of their partners.
Female condoms were launched under the name ‘Confidom’ four years ago in India and have since been going through various research processes to test their efficacy and ease of use. They are being distributed through social marketing campaigns to groups of sex workers and select other groups through tie-ups with 60 NGOs working in the area of HIV/AIDS.
The experience over the last few years has shown that even though the female condom is accepted by women in spirit, in practice there are still some barriers that make it an inconvenience. They are slightly expensive, not freely available, and women need to be shown or taught how to use them. Female condoms also require time and privacy for insertion which makes it less practical; in some cases they were reported to be slightly uncomfortable.
The female condom as an idea is appealing as it obviously gives some sense of control to the woman, yet it practically does not seem to be a feasible solution to the AIDS epidemic yet. Also still far on the horizon is the AIDS vaccine currently under research, supported by NACO, Indian Council of Medical Research (ICMR) and International AIDS Vaccine Initiative (IAVI) and scheduled to go in for another phase of clinical trials.
Microbicides are being touted as “the most important innovation in reproductive health since the Pill”.Ms Megan Gottemoeller, MPH, International Programme Coordinator of Global Campaign for Microbicides, quoted in ‘Report - Round Table Meet On The Growing Menace of HIV/AIDS And Prevention Options for Women’, February 2004, Centre for Social Research, New Delhi .
These are compounds in the form of gels, lubricants, creams, etc, that may be applied topically in the vaginal area to prevent transmission of HIV infected cells. Two basic kinds of microbicides are in the pipeline – one that uses “sulphated polysachharides” to form a barrier to infection, and the other that neutralises the alkalinity of the semen and maintains vaginal acidity, which limits the survival of the HIV virus and other infections.
The problem with both the female condom and microbicides, however, is that both are likely to act as contraceptive methods, and will not appeal to young married women who may want to have children and also be protected from HIV. Over fifty microbicidal products are in the process of trials. In India, a neem-based microbicide called ‘Proneem’ has been tested in the first phase by the National Institute of Research on Reproductive Health, Mumbai, and PGI, Chandigarh. Further trials are being conducted by the National AIDS Research Institute, Pune. Microbicides will be promoted not as a preventive measure but as a risk-reducing measure. Some products are expected to be in the market in the next five years.
Women as agents of change
While the government sees women are primarily a constituency that needs to be protected, NGOs and women’s groups have predominantly seen women as active agents of change who can be effectively harnessed in the fight against AIDS. NGOs have been key actors in the movement against HIV/AIDS engaged in a gamut of activities from information and awareness generation, prevention-based interventions in the community and in collectives, legal support against discrimination, as well as care and treatment support for people with HIV.
From HIV intervention to empowerment
Some of these intervention programmes by NGOs have sparked off movements that have long term implications for women’s empowerment, like the sex workers’ movements across the country. Programmes that initially began as condom promotion campaigns or HIV prevention programmes, evolved into larger and louder voices for social change, raising questions of the rights of sex workers and people living with HIV on the whole. For example, the initiative of the STD/HIV Intervention Project (SHIP) in the red light area of Sonagachi, in Kolkata, fuelled the creation of the well-documented sex workers’ collective Durbar Mahila Samanvyaya Committee (DMSC). The SHIP programme began in 1992 and consisted of behaviour change communication, condom promotion and distribution and awareness generation among sex workers of Sonagachi, using sex workers as peer educators.
Over the next few years the DMSC sex workers’ forum was formed; registered in 1995 with 13 members, it today claims to be a forum of 65,000 sex workers across West Bengal. DMSC not only continues to have an STD/HIV programme but also runs various other initiatives – the Usha Cooperative Bank for sex workers and their children, Srishti a vocational training centre and literacy programmes in sex work sites all over the state. Moreover, through the ‘Sex Workers’ Manifesto’ and other interventions, they were at the forefront of demanding that sex work be seen as work and sex workers be given worker’s rights and citizen’s rights.
The experience of SANGRAM based in Sangli, Maharashtra has been similar. Its initial HIV intervention programmes started in 1992 in Maharashtra and parts of Karnataka with sex workers and women in prostitution prompted it to organise and form the VAMP collective in 1996. VAMP initially stood for Veshya AIDS Mukabla Parishad (Forum of Women in Prostitution to Combat AIDS) but as its work evolved, although the acronym remained the same the women in the collective decided to change the name to Veshya Anyay Mukabla Parishad (Forum to Combat Discrimination Against Women in Prostitution) reflecting the widening umbrella of concerns.
Not only NGOs but women affected by HIV themselves (non sex workers, mostly women infected by their husbands and the deserted/widowed) have organised into support groups and regional and national networks. With their voices being finally heard in the public domain, and the specific nature of their problems being understood by policy makers, they have radically altered the pace and nature of interventions.
For example, the Positive Women’s Network (PWN+) based in Chennai was started in 1998 with four members to address the need for a support group for HIV-positive women, and to improve the quality of life of women living with HIV and AIDS and their children. Kousalya, one of the four original members, feels she was driven by the need to “not let what happened to me, happen to other women and ensure that those already infected get the care and support they need”. Today, they have over 600 members, with their work and voices reaching all corners of the globe.
Networks of positive people have emerged in many states with sub networks of positive women which offer a space for women to share their experience of HIV, find a supportive environment and also enable them to tap a network of information, resources and health and legal services.
The challenges ahead
The work of NGOs with high risk groups (whether sex workers, intravenous drug users, men who have sex with men, truck drivers etc) continues, but there are various challenges before them: how to reach out to married women, how to address the increasing needs of people with HIV for medication and treatment, how to balance the need for information with the real need for care, and how to move forward without being trapped by their own agendas.
The lessons that have been learnt in the last decade is that HIV has a particularly complex relationship with women in India because of the way it is linked so intrinsically to their low status, the cultural context and their position in the social hierarchy. Women in collectives – whether sex workers’ collectives or networks of positive women – have demonstrated that it is only by locating themselves in the rights framework and empowering themselves through processes such as organising that the AIDS epidemic can be challenged.
(Manjima Bhattacharjya is a sociologist and activist based in Mumbai. She did her PhD from the Centre for the Study of Social Systems, Jawaharlal Nehru University, on globalisation, women and work, and currently writes for various publications on socio-political issues. She has been active in the Indian women’s movement for the last 10 years)
- UNAIDS Report, ‘The Global AIDS Epidemic’, 2004
- UNAIDS, AIDS Epidemic Update 2006: December 2006
- Quinn, Thomas C & Overbaugh, Julie, ‘HIV/AIDS in Women: An Expanding Epidemic’, Science, June 10, 2005
- In 2007, NACO announced that according to the results of the National Family Health Survey (NFHS-3) India’s HIV burden was only 2.5 million. This came as a surprise because the number was half of the previous year’s figures (5.206 million) that NACO had released, and also contradicted UNAIDS figures released in 2006 (5.7 million). NACO attributed this new data to new, improved methodologies and a wider base of surveillance sites. The new figures countered previous belief that India had a generalised epidemic with about 1% of the general population infected. The new overall prevalence is less than half that. National and international experts have accepted this new data although NGOs and activist groups working on HIV have questioned these figures. See index.php?option=com_
content&task=view&id=6822&Itemid=68 for more.
- ‘Report of the Steering Committee on Empowerment of Women and Development of Children for the Eleventh Plan’, Planning Commission, Government of India, 2007
- UNFPA, ‘State of World Population: The Promise of Equality: Gender Equity, Reproductive Health and the MDGs’, 2005
- See www.iwhc.org/resources/asiafactsheet.cfm
- UNIFEM in collaboration with North-East Network (NEN); Stree Aadhar Kendra (SAK); Initiatives: Women in Development; and, Institute of Social Studies Trust (ISST), ‘Community-based Research: Gender Dimensions of HIV/AIDS in India’, 2000
- Breakthrough, ‘Stigma and Discrimination Faced by Women Living with HIV/AIDS’, New Delhi, 2006
- Chandra, Prabha S. et al, ‘HIV & Psychiatric Disorders’, Indian Journal of Medical Research, April 2005
- See http://www.hinduonnet.com/thehindu/mag/2004/
- Andhra Pradesh, Karnataka, Maharashtra, Tamil Nadu, Manipur and Nagaland.
- According to NACO
(www.nacoonline.org), currently there are more than 4000 ICTCs in the country,
most of these in government hospitals, which offer PPTCT services to pregnant women.
- UNAIDS/WHO, ‘Epidemiological Fact Sheets – India’, December 2006, available online at http://www.who.int/GlobalAtlas/predefinedReports/
- The programme at that time was known as PMTCT, or Prevention of Mother to Child Transmission, later changed to Prevention of Parent to Child Transmission or PPTCT to reflect the importance of involving men, or the fathers in the process of preventing transmission.
- See index.php?option=com_content&task=view&id=6822&
Itemid=68 for a detailed discussion of these debates.
- See http://www.lawyerscollective.org/
content/draft-law-hiv for the full draft of the legislation.
- ‘Knowledge and awareness of HIV/AIDS among women in India’, paper by Duraisamy M, Duraisamy P, from Indian Institute of Technology-Madras, Chennai, India, International Conference on AIDS, 2002 July 7-12; 14.Data in this study indicates ‘that in 1998/9 about 40% of women of 15-49 years in India reported knowledge of AIDS and this has increased over time. For instance, in Delhi 79% of women reported knowledge of AIDS in 1998/99 compared to only 36% in 1992/3’ and that ‘television is the major source of information on the disease’. However, other sources (www.breakthrough.tv),say that only 5% of Indian women have knowledge about ways of preventing AIDS.
- NACO imported 500,000 female condoms in 2006. This went up to 1.5 – 2 million in 2007-2008. See http://infochange.dreamhosters.com/index.php?option=com_
content&task=view&id=6679&Itemid=118 for more on this.
- Ms Megan Gottemoeller, MPH, International Programme Coordinator of Global Campaign for Microbicides, quoted in ‘Report - Round Table Meet On The Growing Menace of HIV/AIDS And Prevention Options for Women’, February 2004, Centre for Social Research, New Delhi
- See www.durbar.org.
- See www.pwnplus.org.
- See http://infochange.dreamhosters.com/index.php?option=com_
content&task=view&id=6822&Itemid=68 for Zarina’s story
InfoChange News & Features, March 2008