Kousalya was married at an age of 19 and by the time she turned 20, she was already a widow, HIV positive and thrown out of her marital home. She caught the virus from her husband, who had kept his positive status a secret from her. This is when she decided to fight for her rights and became the first woman in India to publicly disclose her HIV positive status. Today, over 30,000 HIV+ women and children are positively impacted by Kousalya’s amazing work.

Kousalya Periasamy from Namakkal district of Tamil Nadu was 19 years old when she was forced to marry her cousin so that her ancestral property would stay in the family.

Forty-five days after the wedding she fell sick and consulted a doctor who revealed that she was HIV positive. The doctor also disclosed that her husband was HIV positive too and she had caught the virus from him.

Her husband and his family kept his HIV positive status hidden from her. Kousalya was furious. Not just because she was HIV positive but mainly because she wasn’t told about her husband’s status earlier.

“I felt betrayed. His father knew about his condition, but no one told me about it. And by the time I got to know the reality, it was already too late. I too had become HIV positive,” she said.

Seven months after the wedding, her husband was dead. Soon, she was thrown out of her marital home to stop her from claiming any part of her husband’s property.

Kousalya decided to fight for what was hers. But fighting this battle meant for her to disclose her HIV positive status, which was a giant ordeal at that time. In 1995, Kousalya went public with her story, becoming the first woman in the country to disclose her HIV status publically.

Her story made national headlines and there was no turning back after that. She lodged a police complaint, demanding her share of the property. When her in-laws tried to hush up the complaint, she took them to court.

“It was all happening in 1995, people hardly talked about it. It was a taboo and there was no awareness and support to HIV patients,” said Periasamy.

Kousalya was fighting this battle alone and as she faced the challenges thrown at her, she became determined that something needed to be done to help other women suffering from HIV/AIDS.

The Indian government emphasizes 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.

Another challenge is that most women remain unaware of government services and schemes. The stigma attached to the virus, lack of proper exposure and counselling, the absence of proper medication and treatment prevents HIV-positive women from seeking health services that exist. Often these services are not women-friendly the discrimination faced by these women further stops them from seeking medical help altogether.

“The biggest flaw is the lack of information on care. There is a lot of information on prevention but not much on care and treatment. I’m an HIV-positive person. Where can I go? There is no information. Voluntary testing facilities are there, but that is used only for prevention. But what after I have already caught the virus? What should I do? Women need access to unbiased information and female-friendly health systems so they can protect themselves and live healthy and productive lives,” she said.

Having faced extreme difficulties herself, Kousalya decided to first develop an approach to protect HIV-positive women that utilize human rights instruments to battle violations of human rights against Women Living With HIV/AIDS.

She met other HIV positive women, experts and doctors and created a small group of women in 1998 called Positive Women Network with four founding members.

Kousalya, through PWN, is working to improve how information on HIV and Aids is delivered to women. It also works to improve access to services by providing counselling, treatment, general health services, and drug rehabilitation. By providing employment, vocational training, and credit, the PWN is building a better life for the women living with the virus. It is also working to ensure access to quality education and healthcare for children affected by HIV-positive parents.

PWN has also come up with area-specific strategies. In Tamil Nadu, 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.

The group today reaches out to over 30,000 HIV positive women across 13 states of India and has resulted in life-changing impact in the lives of several women.

The Impact and Highest Policy Level Changes

Radhika*, an HIV positive woman from Chennai contemplated on committing suicide when her husband died of the same disease. Her son too was detected positive. “I didn’t know what to do. I was angry at my husband for giving us this virus,” she recalled. She thought of killing her son and committing suicide. One day she met PWN members in a hospital, who showed her the right path. She received the much needed moral support from other positive women. She learnt embroidery and now earns a steady income. Committing suicide is not on her mind anymore.

There are thousands of women like Radhika who have found a new ray of hope through PWN. All because one woman found enough courage to break the glass ceiling.

“The situation has changed drastically over the period of time. Earlier women would use fake names and identities while connecting. Today they are comfortable sharing their real names and even photos. They are confident in talking about the issue, which is the main reason we are able to bring a change,” Periasamy said.

Based on the efforts of Kousalya, PWN+ and other support groups, 80 percent of government hospitals in all districts in the country offer free treatment for people living with HIV. Through her efforts, the Planning Commission took cognizance of the unique requirements of positive women and children and included these needs in the Twelfth Plan in the period of 2012-2017.

In addition, 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.

The future

Kousalya and her team now want to expand her support towards HIV positive children by providing them better education opportunities and vocational training. By collaborating with news publication, they want to start a corner for children living with HIV to share their stories and thoughts.

Apart from initial support, PWN is gradually moving towards helping women who are undergoing treatment to adjust with the side effects of the medication and normalizing their body.

They are also researching more on the HIV treatment and why certain medication does not work for some women.

The organization will further be focusing on providing better job opportunities in big corporates for people living with HIV.

How can you help?

However, there is still a long way to go. The biggest challenge the organization faces today is lack of resources and funds. The organization runs on individual donations and Periasamy’s personal money. “I recently received government’s Nari Shakti Puruskar in 2017 and got Rs five lakhs. I have used that entire money for PWN activities. We manage our work using such small funds, but this is not enough if we want to reach out to more women,” said Periasamy.

If you want to support PWN you can either do so by providing financial support or by spreading the word about the issue. Periasamy says that they constantly need volunteers to teach various skills to women and children, If people can give even one hour of their time to teach whatever skill they can to the PWN members, it can be a huge help.

PWN is also looking for a researcher who can help them document the treatment and why some treatment cause side effects and does not work for some women. You can also help them document their work, handbooks and various documents in different languages

“If you have marketing, fundraising, writing skills and other similar skills, you can help us train our members. Also, today so many young people have a social media presence. They can help us connect with the right people,” said Periasamy.

The small victories, the smiling faces and changed lives keep Periasamy going. And as long as her husband’s property is concerned, Periasamy is still fighting. The future seems brighter and Periasamy hopes that within a year she will be able to take possession of the property.

She plans to open a library for women in the marital house. She further plans to use the money generated from the other piece of land for children’s education and PWN activities.