Fighting the stigma of living with HIV in Sri Lanka

GAMPAHA DISTRICT, Sri Lanka – Kamal* was given one week to live. He lay in a hospital bed, weighing just 20 kilograms when the doctor diagnosed him with HIV and announced his dire prediction to family and friends in the waiting room.

That was 15 years ago. “Thankfully, although it was a late diagnosis, I had not reached the AIDS stage,” Kamal said. “But I now know even those diagnosed with AIDS can live a healthy life if they receive treatment on time. Still, I am looked at as someone to be avoided and feared.”

Kamal was a social worker who supported and rehabilitated people using alcohol and drugs. But the trauma of self-stigma that came with his diagnosis caused him to shift his focus to supporting people living with HIV, as a peer educator with UNFPA partner Strategic Alliance for Research and Development.

“My personal experience motivates me to go out into the field and help others like myself. It was after I had come to terms with my diagnosis that everything took a turn for the worse,” he recounted. “One day I returned home after work to find my father-in-law had sold my house and thrown all my belongings into the river... I had no place to go… no one to turn to.”

He sought legal help and filed a case, yet “every time I am called to the stand, the opposing lawyer begins his argument by announcing my HIV status. It is not relevant to the case, but that is how society chooses to define me.”

Stigma surrounds a positive diagnosis 

To Kamal, self-stigma has proven the biggest challenge in his work.

“Usually when we talk about stigma, we look at external forms: How society and others perceive people living with HIV,” he explained. “But self-stigma is the most serious and detrimental form of stigma.”

Though the estimated prevalence rate of adults living with HIV is low, “there is a significant proportion who do not return for continued care or evaluation [and] are not reflected in the national data.”

It is Kamal’s job to identify vulnerable persons and encourage testing. His most painful case was informing a married father of two that he was positive. Kamal and his team had to chase after him and drag him away from the rail tracks, where he intended to take his life.  “We brought him back to our office and sat with him for nearly nine hours,” Kamal recalled. “His fear, shame and self-stigma were eating him alive. I saw myself in him.” The team has since worked with the client for more than a year. 

The pandemic pause

The lockdowns and travel restrictions as a result of the first two waves of the COVID-19 pandemic made case finding and conducting fieldwork more challenging. The inaccessibility of condoms and lack of access to support services exacerbated the issue, but Kamal and his team have adapted by moving to the Telegram app, where they conduct live programming with the assistance of doctors and other health care professionals. They also organized closed WhatsApp groups where people share concerns and frustrations that the team can respond to with immediate support.

One of the key places people living with HIV could go for treatment is the National Institute of Infectious Diseases (commonly referred to as the Infectious Disease Hospital), but priority shifted to testing and treating COVID-19 patients at the height of the pandemic. Testing, too, paused for people receiving HIV treatment who normally were tested every six months to assess viral load. “We don’t know if the treatment worked or not,” Kamal said. “Doctors were asking us what to do. They had no place to refer patients to as other hospitals were not equipped or geared to treat people living with HIV.”

In Sri Lanka, UNFPA works through the National STD & AIDS Control Programme with key populations and peer educators like Kamal to advocate for increased testing and awareness on HIV and AIDS and to end the stigma and discrimination that impedes the realization of people’s rights, including enhancing access to essential information and services.

“We are not close to ending AIDS yet in the world,” Kamal said. “But I will continue on.”

*Name changed for privacy and protection