Inter Press Service - October 2, 2009
Neeta Lal

Within a month of her marriage in 1996 to a truck driver in Namakkal, in India's southern state of Tamil Nadu, her spouse was diagnosed with AIDS. Six months later he died, but not before doctors confirmed Kousalya's worst nightmare that she too was infected with the deadly HIV virus.

The hapless widow's life could well have followed an unhappy trajectory from there. But Kousalya chose to give things a different turn. "Even though I was furious with my husband for cheating on me and hiding his illness despite knowing about it at the time of our marriage, I soon realised that a negative attitude won't help me," says Kousalya, 35, who has studied till class 12 and has a nursing background.

The plucky woman channeled her angst into providing succor for others like her. "The doctors had warned me that I won't live beyond a few months, so whatever needed to be done must happen quickly," laughs Kousalya.

She moved from Namakkal to the state capital of Chennai with her uncle in 1997. Here, she joined an initiative called INP Plus (Indian Network for Positive People Plus) which disseminated information about HIV/AIDS. When INP Plus opened a separate wing for women and children - PWN (Positive Women's Network) Plus - Kousalya was chosen to helm it.

Even though HIV-infected people in India were ostracised as untouchables at that time, Kousalya acknowledged that she was HIV-positive and emerged as a national hero. She spoke at length about her predicament. She even let herself be photographed.

PWN Plus - that was launched in 1998 with just four founding members - grew exponentially. It found a resonance amongst thousands of women living with HIV/AIDS (WLHA) who were living with the scars of a stigma and discrimination. To augment the quality of life for WLHA and their children in India at the macro and micro level, PWN Plus started working in synergy with state organisations.

The outfit gradually extended its reach across the globe by tying up with UNAIDS (Joint United Nations Programme on HIV and AIDS), UNDP (United Nations Development Program), UNIFEM (United Nations Development Fund for Women) and the Commonwealth.

"Today," elaborates Kousalya, "we have 14 state networks in Tamil Nadu, Kerala, Andhra Pradesh, Delhi, Rajastan, Manipur, Pondicherry, Karnataka, Maharashtra, Mizoram, Madhya Pradesh, Haryana, Uttar Pradesh and Orissa. Our networks in five states like Maharashtra, Mizoram, Manipur, Pondicherry and Haryana are operating without any external support or funding."

Padmavati, 34, infected by her husband came to PWN for legal help in a property case. She was a wreck and could barely communicate her problem to the volunteers. While interacting with the network's staff, however, she got interested in their work. She joined as a trainee in 1999.

Today, she is the president of the PWN network in Tamil Nadu, confidently travels on work, attending seminars, organising workshops and advising women about their rights. "Joining the network has been a life-altering experience for me," says Padmavati.

As president of PWN Plus, Kousalya frequently travels in India and abroad playing multifarious roles - of activist, counselor and speaker on HIV and AIDS issues. She speaks fluent English and adroitly handles journalistic enquiries. "I have addressed the Indian Parliament (2000) about the problems of HIV-positive people, spoken at the British Parliament (2004), had interactions with erstwhile president Dr A.P.J. Abdul Kalam (2006), U.N. Secretary General Kofi Annan (2006) and with Congress President Sonia Gandhi (2006)," she says with pride.

"Most HIV and AIDS programmes in the country are aimed at 'prevention' rather than treatment and rehabilitation," says Kousalya. "These programmes primarily target high-risk segments of society, such as commercial sex workers and truck drivers. We need to have a rights-based approach for women and children who are at risk," she asserts.

This is a judicious approach considering India currently hosts 2.4 million HIV-positive people. Of these, an estimated 39 percent are female and 3.5 percent children. According to Union Minister for Health, Ghulam Nabi Azad, around 90 percent of all children living with HIV acquired the infection from their mothers during pregnancy, birth or breastfeeding.

Thus PWN Plus' PPCT (Prevention of Parent to Child Transmission) initiatives addresses this demographic by stationing volunteers across 21 districts in five states. These volunteers act as watchdogs and report cases of discrimination by healthcare givers and advise pregnant women.

While addressing the children, according to Kousalya, the HIV/AIDS interface call for a multi- pronged approach. More so because the situation in large swaths of the country is truly alarming. In states like Nagaland, Manipur, Tamil Nadu, Andhra Pradesh and Maharashtra, she says, children are routinely turned away from orphanages, educational institutes and hospitals because they or their family members are HIV-positive.

While focusing so much on kids, does the crusader regret not having any of her own? "Life is too short for regrets," she says. "I've made a name for myself because I am HIV positive. I consider this an advantage. Else, I may well have died unsung in Namakkal!"

*****

+ CUBA: HIV Positive Want Respect, Not Tolerance (http://www.aegis.org/news/ips/2009/IP090410.html)

+ AFRICA: Financial Crisis Scapegoat for ARV Stockouts? (http://www.aegis.org/news/ips/2009/IP090910.html)

+ INDIA: HIV-Positive Get User Rights to Till Land (http://www.aegis.org/news/ips/2009/IP090902.html)

+ Positive Women Network (http://www.pwnplus.org/)

091002
IP091002

Always watch for outdated information. This article first appeared in 2009. This material is designed to support, not replace, the relationship that exists between you and your doctor.

AEGiS presents published material, reprinted with permission and neither endorses nor opposes any material. All information contained on this website, including information relating to health conditions, products, and treatments, is for informational purposes only. It is often presented in summary or aggregate form. It is not meant to be a substitute for the advice provided by your own physician or other medical professionals. Always discuss treatment options with a doctor who specializes in treating HIV.

Copyright ©1980, 2009. AEGiS. All materials appearing on AEGiS are protected by copyright as a collective work or compilation under U.S. copyright and other laws and are the property of AEGiS, or the party credited as the provider of the content. .