Fighting for People Living with HIV in India

Pravasini Pradhan is the president and founder of Kalinga Network for People Living with HIV/AIDS (KNP+). She started the organization in 2006 and has become a prominent community activist—working to increase access to government social benefits for people living with HIV and for most-at-risk populations, including transgender people, in Odisha, India.

KNP+ is a partner with the Elizabeth Glaser Pediatric AIDS Foundation (EGPAF) through Solidarity and Action Against the HIV Infection in India (SAATHII). Pravasini was one of the community activists who participated in SAATHll’s leadership development program with the Coalition-based Advocacy Project, supported by DFID-UK and Interact WorldWide.

“In 2003, my husband tested HIV-positive,” says Pravasini. “It was the 15th of the month when he was diagnosed. By the 30th he died. After that it was quite obvious I had to be tested. I was found positive. I felt lonely. I felt like the world had come to an end.

“I have one daughter. She is HIV-negative. She was 1 year old at the time, and my in-laws drove me out of the house—along with my daughter. I had to go live at my mother’s house. But that also wasn’t easy. Family members wouldn’t even let their children play with my child.

“In 2006, we felt the need of a network that would help the people living with HIV in getting their day-to-day needs. At the time people were not very aware about the antiretroviral therapy centers. People were not aware about the service delivery points—even some of our friends. That scenario compelled us to form a network to provide information as well as direct service to those who are in need.

Now I am welcome in the family again. Because I am a visible leader my family is more willing to accept me and even my in-laws are welcoming me. There is now a better relationship with them than existed when my husband was alive. And they are also welcoming my daughter back.

One of Pravasini’s colleagues is 26-year-old Banita Jena. Banita married when she was 22, and two years later was happily pregnant. She looked forward to welcoming the new child into the home that she and her husband shared with his parents. Unfortunately, the delivery did not go smoothly. Banita started bleeding badly during labor and was given three separate transfusions. Despite the frightening situation, both mother and infant daughter survived the delivery.

Banita by Ann Summa

However, after Banita and her new daughter were discharged, the infant became chronically ill. A doctor suggested that the infant might be infected with HIV and advised Banita that she and her husband should be tested. The test results showed that Banita was HIV-positive while her husband was not. It is likely that Banita was infected from the blood transfusions.

Banita’s husband assumed that his wife had been unfaithful; he abandoned her and their baby at the hospital. When Banita returned home with her infant daughter, her in-laws refused to let them into the house. Banita’s husband refused to see her.

Fortunately, Banita found support with KNP+. Counselors tried to reason with Banita’s in-laws and open a dialogue. But they were unsuccessful.

“[The in-laws] were very clear in their intentions not to take her back,” says Chandan Kumar, a counselor with SAATHII who works with KNP+. “We made a second visit, asking them to take her back but in the meantime her child had died. And this visit also was a failure.”

Photo credit: Ann Summa

The legal team working at SAATHII helped Banita file a claim for her property. In the end, her dowry was returned to her. She also received some money for her daily maintenance. It wasn’t as much as she had expected but it was something to help her live during this transition.

Now Banita works at an HIV treatment center as a counselor with KNP+.

I can show that HIV-positive people can lead a good life. Banita

“I went to live a healthier life with my message to the positive people and to society: never lose hope,” says Banita. “They don’t know about the treatment processes—how you can live long, what is home-based care, what is positive living.”

“Since we are [HIV-] positive—and we are dealing with people who have tested positive—who else is a better role model for the client?” asks Pravasini. “We tell them, ‘Look … I am HIV-positive. I can live a healthy life with dignity.’”

Banita has helped conduct village meetings of up to 100 participants to stop “whispering campaign” by informing both genders about the realities of HIV and AIDS.

“I was nervous,” Banita admits, but she quickly adds that through her KNP+ support groups she has learned to express her feelings and is now confident speaking in public. She says that education is the key to removing the stigma of HIV.

“Banita has become empowered,” since she started working with KNP+, says Chandan. “Male counselors can’t go where she goes.”