Fighting HIV With Hope: The Community’s Struggle Against All Odds

This National HIV Vaccine Awareness Day, here’s a window into the lives of people who live with HIV/AIDS.

(Photo Courtesy: Indu Harikumar)

(18 May is observed annually as National HIV Vaccine Awareness Day. This year, The Quint joins hands with International AIDS Vaccine Initiative (IAVI) to bring you stories of people living with HIV/AIDS in India.)

External wars leave behind scars, but when the battle rages within, it can destroy the human body without leaving so much as a paper cut. In order to fight HIV, one needs to equip themselves with weapons of attention, awareness, prevention, confidence and hope. In most cases, proper treatment and diet can help patients lead normal lives again.

‘I Was Lucky I Got Support’

“Today, I wonder what it is that the world supports about me – is it my sexual encounters with men... or is it my vulnerability?” (Photo Courtesy: Indu Harikumar)

“My first sexual encounter with men was in 8th standard,” says Gopi, who discovered his homosexuality while he was working as a waiter at a hotel near his house, in order to support his family.

“By 10th standard this became a regular affair. I wanted to quit this behaviour but could not. I could not share it with anyone either,” recounts Gopi.

Since I indulged in homosexual activities from a young age, I got my tests done and the results came up positive. I was upset. I didn’t know how to tell my family. I was the youngest among 8 siblings and had an unmarried sister. I felt like committing suicide.

“My friend told me about an NGO, and I went there for counselling. They told me this wasn’t the end of the road, but the start of a new journey,”

Gopi couldn’t confide in his family, but he found support in a friend. “My family still doesn’t know about my status, I don’t wish for them to know about it.”

He now regularly visits the Anti-Retrovial Therapy (ART) Centre. His friend accompanies him on his visits. Gopi says he’s lucky to have the support of his friend and that it gives him the confidence he needs in order to deal with his condition. But not every HIV+ individual is as lucky.

‘Dilemma of Safe Practices’

“They believe safe sex is my choice”. (Photo Courtesy: Indu Harikumar)

Meena remembers the day she decided to get in touch with a man who had offered her food and money in exchange for sex. Her daughter was hungry and inconsolable. Meena had no money and was too malnourished to breast feed.

“I entered the house feeling scared, but I knew there was nothing else I could do,” Meena recounts....

My child was crying and I was desperate for food. I vividly remember there was food on the table and I could eat as much as I wanted. I ate to my heart’s content and then got down to business. That day my pride shattered, but I was a mother who had won.

Despite many NGOs working with female sex workers to help them understand the importance of safe sex, many sex workers often find themselves battling with the same dilemma: to please a client who pays only when his demands are met, or to stay safe without earning a single penny?

“We are aware of our rights and we wish to adopt safer practices. However, it doesn’t end there. It’s not about just knowing things,” says Meena.

It is the client who decides. When I refuse sex without a condom, they usually do not agree.

‘A Vaccine to Protect Her Forever’

“What will my daughter’s fate be?” (Photo Courtesy: Indu Harikumar) 

Like floral garlands on our wedding day, my husband placed the red ribbon on my neck.

For Apsara, life was beautiful until she discovered that she and her husband were HIV positive. Her husband had transmitted the virus to her. She struggled for days, trying to accept and live with the news. Treatment helped normalise things a bit.

Today, Apsara is terrified about what the future holds for her daughter. What if she contracts HIV from her husband too? Is there no vaccine that can protect her daughter forever against this ghastly disease?

‘A Hope-filled Fight’

“We wanted to end this tiring game of being positive when everything around us was negative”. (Photo Courtesy: Indu Harikumar)

Ram, a doting father to a 4-year-old daughter and a loving husband, travels 100 kilometres every day to help people at risk of HIC lead a healthy and secure life. Ram, a former drug user, says he has a responsibility to educate drug users about the dangers of HIV and wants to teach them about safer practises.

Ram got married, and within a year, HIV entered the lives of the young couple.

We felt like ending our lives then and there. My wife and I were the only support we had for each other. I was caught in a vicious loop where I used to take drugs to live, and live to take drugs. Counselling helped us believe that we could lead normal lives. 

Ram

Today, they have an adopted daughter.

We adopted a girl child and have nurtured a loving family. However, our HIV status is not known to our families till date. We fear they would isolate me and my wife.

The couple run two unisex parlours in their city.

‘Ignorance is Dangerous’

“Clients ask if we have a sexual infection. If we say yes, we lost a client. If we say no, we remain unprotected”. (Photo Courtesy: Indu Harikumar) 

Chandani knew she was a woman trapped in a male body, but her family didn’t want to hear about it. Her father detested her presence and her siblings would tease her for being feminine.

I was always kept indoors and would not be allowed to go outside. They were ashamed of me. One day, I left and decided to be free. The transgender community accepted me happily. They are very warm people.

Chandani

“I feel sad about the way people treat us. Many of my friends have been suffering because of ignorance of people who come to seek services from them,” she says.

“I have been told that the clients refuse to use protection. If someone tells them that it is important, they ask us if we have a sexual infection. If we say yes, we lose our client, if we say no, we remain unprotected.”

(Names have been changed to protect identities. International AIDS Vaccine Initiative (IAVI) is a global non-profit organization working with researchers towards the development of vaccines for the prevention of HIV and AIDS.)