Helping families’ cope with HIV

The discovery of being HIV-positive and coping with it can have devastating consequences in the absence of information and support. In 2004, Ashok Patil, an HIV- positive man from Sangalwadi, discovered his wife was also HIV positive. He killed his wife with a sharp instrument and strangled both their children before hanging himself to death. Following this, SANGRAM and the Giants group organized a solidarity campaign, to highlight that there was both information and support for HIV affected persons, and that no one needs to take a life because of HIV/AIDS.

Even without that extreme step, life has been a living hell for people living with HIV. One HIV-positive girl’s family plotted to ‘lose’ her during the Pandharpur yatra. “We had many HIV-positive people whose families treated them like untouchables,” says Shakeel Mujawar, SANGRAM staffer. “They were terrified they would get HIV if the patient touched them. Families would not eat food cooked by HIV-positive women, and partners stopped having sex with them."

But there are also redeeming cases of people whose lives have been transformed by counseling. “First my husband had AIDS, then I discovered I had it too,” says a woman in the Ashta PHC. “So I returned to my mother’s home. Later my husband died of AIDS. But after SANGRAM counseled my family, it was a great relief when my in-laws brought me back. My father-in-law, a bangle seller, said, ‘I realize it is not your fault, it’s just our fate."

Turning adversity into strength: Sneha Gaikwad

25-year-old Sneha Gaikwad, was married to Dnyaneshwar, a 45-year-old alcoholic autorickshaw driver in Bombay. “My husband had AIDS and didn’t tell me,” she says.” But soon my mother-in-law started to separate the cups and plates my husband used, then told me not to have marital relations with him. Later they refused to touch me or eat food I’d cooked.”

Sneha secretly took his medical papers to the doctor and realized he had AIDS. In 2003, a SANGRAM volunteer overheard her talking at the PHC, when she had just found out she too was positive. The SANGRAM volunteer came on a discreet home visit to counsel the family, simply introducing herself as a friend working at the civil hospital. “After listening to her, my family embraced me again—and I had tears in my eyes,” she says.

Sneha has turned her own humbling experience into a determination to actively intervene in other HIV-positive cases. “Information can save lives,” says Sneha, who is part of an informal support group. This informal support group for HIV positive women went on to become SANGRAM Plus that has 33 self help groups, spread over 10 blocks of Sangli with the participation of about 406 HIV positive women.