Fighting the stigma of living with HIV in Sri Lanka – Sri Lanka
GAMPAHA DISTRICT, Sri Lanka — Kamal* had only one week to live. He was lying in a hospital bed and weighing only 20 kilograms when the doctor diagnosed him with HIV and announced his dire prediction to family and friends in the waiting room.
It was 15 years ago. “Fortunately, even though it was a late diagnosis, I hadn’t reached the stage of AIDS,” Kamal said. “But I now know that even people diagnosed with AIDS can lead healthy lives if they receive treatment in time. Yet I am seen as someone to be avoided and feared.”
Kamal was a social worker who supported and rehabilitated people who used alcohol and drugs. But the trauma of self-stigma that accompanied his diagnosis led him to focus on supporting people living with HIV, as a peer educator with the Strategic Alliance for Research and Development, partner from UNFPA.
“My personal experience motivates me to go into the field and help others like me. It was after accepting my diagnosis that everything got worse,” he said. “One day I came home from work to find that my stepfather had sold my house and thrown all my stuff into the river…I had nowhere to go…no one to turn to .”
He sought the help of a lawyer and filed a complaint, but “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’s how society chooses to define me.”
Stigma surrounds a positive diagnosis
For Kamal, self-stigma has proven to be the biggest challenge in his job.
“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 damaging form of stigma.”
Although the estimated prevalence rate of adults living with HIV is low, “there is a significant proportion who do not return for ongoing care or assessment. [and] are not reflected in national data.
It is Kamal’s job to identify vulnerable people and encourage testing. His most painful case was informing a married father of two children that he was HIV-positive. Kamal and his team had to chase him and drag him away from the train tracks, where he intended to kill himself. “We took him back to our office and sat with him for almost nine hours,” Kamal recalls. “His fear, shame and self-stigma ate at him. I saw myself in him.” Since then, the team has been working with the client for over a year.
The pandemic break
Lockdowns and travel restrictions following the first two waves of the COVID-19 pandemic made finding cases and conducting fieldwork more difficult. The inaccessibility of condoms and lack of access to support services have exacerbated the problem, but Kamal and his team have adapted by switching to the Telegram app, where they run live programs with the help of doctors and other health professionals. They have also organized closed WhatsApp groups where people share their concerns and frustrations which the team can address with immediate support.
The National Institute of Infectious Diseases (commonly known as the Infectious Diseases Hospital) is one of the main places people living with HIV can seek care, but the focus has shifted to testing and treating HIV infections. patients with COVID-19 at the height of the pandemic. Testing was also halted for people receiving HIV treatment who were normally 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 because other hospitals were not equipped or adapted to treat people living with HIV.
In Sri Lanka, UNFPA is working through the National STD and AIDS Control Program with key populations and peer educators like Kamal to advocate for increased HIV and HIV testing and education. AIDS and to end the stigma and discrimination that hinder the realization of people’s rights, including by strengthening access to essential information and services.
“We are not yet close to ending AIDS in the world,” Kamal said. “But I will continue.”
*Name changed for privacy and protection reasons