Kousalya Periasamy is a pioneer: the first woman in India to declare she is HIV-positive. She has brought attention to the fact that the average Indian housewife is at risk of infection. Through the Positive Women Network, she is creating a network of support systems for women living with HIV and Aids in India.
The New Idea
Kousalya is working to end the stigma and discrimination in India against HIV-positive women in all social spheres. Most of the HIV and Aids programs in the country have focused on prevention rather than treatment and rehabilitation. These programs have primarily targeted high risk segments of society, such as commercial sex workers and truck drivers. Kousalya is using a rights-based approach to highlight the fact that millions of other women, young people, and children are at risk as well.She is reaching out to women living with HIV and Aids by creating a nationwide grassroots network that enables HIV-positive women to advance their cause in a unified way. It is a unique example in India of the transformation of grassroots leadership into a national resource that contributes to the medical, social and legislative responses to HIV at the community, state, and national levels.The Positive Women Network works on several fronts. It lobbies to improve how information on HIV and Aids is delivered to women. It also works to improve access to services by providing counseling, treatment, general health services, and drug rehabilitation. The Network is helping to push for affirmative action for infected women in the forms of employment, vocational training, and credit. It is working to ensure access to quality education and health care for children affected by HIV-positive parents.In 1998, the Network started up with just four founding members, mostly from Tamil Nadu. In 2002, it organized the first National Consultation on women living with HIV and Aids, transforming it into a national network. In 2006, it had more than 5,000 members, with firmly established units in Karnataka, Kerala, Andhra Pradesh, Maharashtra, Gujarat, Manipur, West Bengal, Assam and Orissa.
There are millions of women and children at risk of HIV and Aids in India today. The risk factors are compounded by the government’s misguided message that “if you are married and remain faithful to your husband, you will not get Aids.” The recent testimonies of a large number of PWN+ women, led by Kousalya, prove otherwise. Married to men who were HIV-positive and who, knowingly or not, infected their wives with HIV, many of these women are now widows. They are doubly stigmatized and ostracized by their communities when their status is revealed. The country’s primary Aids control body, the National Aids Control Organization (NACO) has refused for a long time to acknowledge that the deadly HIV and Aids issue affects the entire society.A UNAIDS Epidemic Update states that the Aids epidemic is affecting women and girls in increasing numbers. According to the update, the HIV epidemic in India is, in fact, very diverse. There were about 5.1 million HIV-positive persons in India in 2003. Serious epidemics are under way in several states. In Tamil Nadu, HIV prevalence of 50 percent has been found among sex workers, while in Andhra Pradesh, Karnataka, Maharashtra and Nagaland, HIV prevalence has crossed the one percent mark among pregnant women. In Manipur, HIV prevalence measured at antenatal clinics in Imphal and Churachand has risen from below 1 percent to over 5 percent, with many women testing positive appearing to be sexual partners of male drug injectors.Women living with Aids are increasingly forced to shoulder the burden of caring for and supporting impoverished families deprived of the male earner. Women often find that they are ill equipped to face these challenges in the absence of social safety nets. The lack of information on health services and legal rights plays an important role in marginalizing women’s concerns. Most women remain unaware of government services and schemes. The associated stigma and the absence of proper counseling, treatment and medication discourage HIV-positive women from seeking the health services that do exist. Most health services are not women-friendly and the discriminatory attitude of health providers and medical staff toward women generally act as major deterrents to accessing services. Service delivery in rural areas is even worse.With the launch of the Mother-to-Child Transmission Prevention program in the country, all pregnant women are tested for HIV in both government and private hospitals. However, many are tested without informed consent and they receive almost no information or counseling. In case infection is detected, many hospitals discriminate against these women, turning them away from access to care. Some government hospitals have the testing programs available and women may be referred there. Unfortunately, many women do not know their status or the reasons they are being referred to these hospitals. Moreover, pediatric care for HIV, including Anti-Retroviral drugs, is not available. In fact, only two or three doctors have been trained in specialized pediatric ARV delivery in all of India.The Indian government continues to emphasize prevention over treatment. Only a very small number of HIV-positive people receive ARV therapy. NACO currently does not plan to expand access to ARVs, except for the prevention of mother-to-child HIV transmission. Even if a quarter of the money spent on prevention had been utilized carefully for providing care, the situation would not have worsened as much. In the end, stigma and discrimination appear on the top of the list of problems. Women face harassment and violence within and outside the family. Humiliation in both marital and natal homes and the lack of a programmatic response from the state has driven many women to destitution. Outside the family, many communities are hesitant to let HIV-positive women rent or use community property, even for performing last rites. These women struggle to care for their children and provide them with treatment in the event that they contract the disease as well.A study conducted by Positive Women’s Network identified six major concerns of HIV-positive women that need to be placed within a human rights discourse: health care and treatment (the main concerns were mandatory testing without consent, abortion without adequate counseling and lack of resources to access treatment); property succession and inheritance within natal and marital homes; access to reproductive rights and health; livelihood opportunities; decision-making powers; and access to state-sponsored benefits.
The foundation of Kousalya’s work is the simple message of “positive living.” Personal experiences have shaped her strategies which draw on the power of numbers, constant advocacy and by tackling the issue from a rights perspective. Her belief is that if women are given support and information and user-friendly services, prevention will follow automatically. Her goal is to mainstream HIV-positive women’s needs in all government departments and health and development policies, as well as within the women’s movement, beginning at the grassroots level.India is a signatory to the United Nations and other international agreements on political and civic rights that encourage universal respect for human rights and fundamental freedom for all without discrimination. The Constitution of India also embodies such rights. The country’s 10th Five Year Plan, currently under way, and its predecessor the Ninth Plan, have sought to mainstream gender with development in terms of education, health and economic wellbeing.Kousalya has therefore, first and foremost, developed an approach to protect HIV-positive women that utilizes human rights instruments to battle violations of human rights against WLHA. She is building a new consensus among policy makers at the state and central government level. She is establishing HIV-positive women as rightful beneficiaries while she charts a plan of action and identifies key members from state networks. These members will take on the responsibility of implementing the blueprint to secure the inclusion of PWN+ as a key player and HIV-positive people as full citizens. The goals of this plan include: 1) access to healthcare; 2) right to treatment; 3) right to privacy; 4) right to information and education; and 5) right to be free from cruel, inhuman or degrading treatment/punishment.Through national conventions and other forums, Kousalya disseminates information on the implications of such rights on the lives of HIV-positive women. She arms the women with enough knowledge to demand from the government greater involvement and representation in all decision-making processes and policy formation related to HIV-positive women. In this regard, Network has a solidarity network of not only state representations but other agencies as well, such as Centre for Advocacy and Research, USAID, Centre for Disease Control, Lawyers Collective, Family Health International, and CARE. Kousalya’s network has also forged several public-private partnerships and collaborated with diverse and powerful institutions including the UN, NACO, international and bilateral agencies, local administrations, civil society groups, corporations, and networks at every stage with the Indian Network of People Living with HIV-Aids. It works closely with state Aids control societies, departments of health and family welfare, sex workers collectives, government and private schools and colleges as well as hospitals at the district and local levels, local clubs and diagnostic centers. Hospital authorities and medical associations are now inviting Network members as resource persons to talk to doctors about women with HIV or Aids being denied treatment and subjected to indignities.An important aspect of Kousalya’s work is addressing the special needs of children living with HIV and also those living with positive parents by demanding that the government ensures nutrition, education and security and appropriate pediatric formulations for HIV-positive children. Kousalya has also evolved area-specific strategies. In Tamil Nadu, for instance, women have been actively spearheading women-friendly services in Sexually Transmitted Diseases departments. In Gujarat, four infected women chose their marital partners through a marriage bureau managed by the Network. The Kerala Network conducted the first public hearing, with support from the National Commission for Women, to address the concerns of women, a breakthrough in terms of garnering public recognition and support for positive women. In Bengal, the Network has initiated income-generation schemes for women. In Assam also, where the government has been very supportive, processes have been initiated for building the capacities of infected women. In Manipur, a safe space has been created where women can seek support and share their concerns.Kousalya is leveraging government and private programs to influence government hospitals, primary healthcare centers, sub-centers at the district and taluka levels and private hospitals to provide information on treatment, drug rehabilitation and community care. Locally relevant educational material and formats have been developed such as street plays and puppetry, which cater to large segments of illiterate women. Peer-based approaches are being used to develop the skills of women to act as further disseminators of information under the Positive Speakers Bureau program. Apart from that, she is also spearheading a movement to increase women’s access to income-generating policies and programs including access to loans and credit and social security.The Positive Speakers Bureau program is just one among the number of collectives put together by Kousalya. It is essentially youth-focused, working primarily among the 18 to 20 age group in schools and colleges in order to enlist volunteers. The Positive Living Project, launched as a pilot in the Namakkal district of Tamil Nadu, provides a model for building support groups to share information on treatment, livelihood, laws, health and hygiene and create safe spaces for the women to interact. There is a clinic attached to the project staffed with a doctor and pediatrician.Documentation of testimonials and research on the current services available to women forms an important part of Kousalya’s work. She is at the moment planning a national convention for children of HIV-positive parents and looking for ways to give incentives for insurance companies to extend policies. The convention would also examine ways to access government schemes for children infected through blood transfusions. The Network is also providing training to government anti-retroviral program workers in the high prevalence districts about ARVs and how patients can take care of themselves. Kousalya’s efforts have resulted in policy changes at the highest levels. For example, the National Aids Control Programme (NACP), spearheaded by NACO, initially poured 80 percent of its funds and personnel into prevention and a bare 20 percent into care and support. Today NACP divides its resources and efforts equally between prevention and care and support.Kousalya is now concentrating on scaling up her network and building a nationwide consensus on common objectives while transforming the old HIV outreach, prevention and care strategies. She is beginning to work at a broader South Asia level as well as join global efforts to battle the disease, as a representative of the SAARC countries and a trustee on the board of the International Community of Women Living with Aids.
"In prevention, there is a lot of information out there. But for care, there is no information at all," says Kousalya. “I’m an HIV-positive person. Where can I go? Where can I get treatment? There is no information, nothing. Voluntary testing facilities are there, but that is used only for prevention." It is this basic flaw in the system that spurred Kousalya, only 20 years old at the time, to set up the Positive Women’s Network.Having lost her mother at the age of two, Kousalya spent her childhood shuttling between the homes of her grandmother and stepmother, in the small town of Namakkal in South India. She was married off to a cousin soon after completing secondary school. Forty-five days later, her husband was dead and the cause of his death was kept a secret from the young bride. She was subsequently driven out of her marital home. When she herself fell ill, she went to a clinic, where a staff person revealed knowledge of Kousalya’s husband’s case and the reason for his death. Kousalya’s diagnosis was no surprise to the clinic staff. Filled with anger and outrage at how her family had treated her, Kousalya took the brave step of filing a case with the local police. Ignorant of the stigma attached to HIV and Aids or the seriousness of the illness, Kousalya went public with her story in 1995, becoming the first woman in the country to come out openly with her status.Her story made national headlines, which Kousalya considers a blessing in disguise, and she came in contact with several citizen organizations working on the disease. This interaction opened up an entirely new world for Kousalya. Armed with information on the disease, she started work in a private hospital as a counselor and began to put together the elements of a model that could break through personal and institutional roadblocks. She saw that, rather than starting one more stove-piped interest group, she needed to help women with HIV and Aids become mainstreamed within the larger health, women’s and HIV-positive movements so that they could have a chance to improve their lives and that of their children. Along the way, the Tamil-speaking young woman taught herself English in order to connect with national and international players and policy makers. Her first encounter with NACO officials set the stage for her take-off. Their refusal to accept her argument that average citizens are at a huge risk for HIV and Aids led to the setting up of the Positive Women’s Network in 1998.