Three decades after the Human Immunodeficiency Virus (HIV) had evolved into a manageable disease with right medication, HIV positive patients in the country are still fighting stigma and discrimination.
An HIV positive patient, Samten, said HIV treatment emerged from a gruelling high pill burden, inconvenient dosing, adverse side effects to a manageable one pill once every 24 hours. “But despite vigorous awareness programmes, stigma and discrimination still exist.”
Samten said she tested positive for HIV in 2016 and that was the day her relatives turned their back against her. “I lost my family, siblings and native community in Chukha.”
She said she went to her village once and swore never to return, even if it was her last day. “Even my close friends ignored me, fearing that they might contract the virus. I was often isolated, refused casual contacts and blamed for contracting the virus.”
From accepting the virus as part of her life to revealing it to her two daughters, reaching out to Lhaksam and taking care of her health, Samten said she had come a long way.
But society remains where it was decades ago.
Illiterate, divorced, and a sole bread earner, she applied for domestic work around the country but was rejected every time she revealed she has HIV.
Samten said she could not hide it because she has to go to the hospital for a regular check-up and produce a medical certificate in most cases. “Many people say I shouldn’t work with them.”
People usually ask where she contacted the virus and blame her bad past life (karma).
Without academic qualification, she said that it was difficult to get a decent job and, with HIV, she was left with limited options. “I explore opportunities in construction work as a daily wage earner as it demands minimal personal details.”
She claimed many offices refused to employ her because she was HIV positive.
Samten is outspoken. “My openness is depriving me of many opportunities, but things have to change. I shared because society must know about it.”
With teary eyes, she said: “I become suicidal at times, but I worry about my children? Who’ll look after them?”
She said that her parents weren’t allowed to meet her. “If I send some parcel to my relatives, I ask my elder daughter to send it. I never touch them.”
Samten said that life became easier after getting in contact with Lhaksam and the community. “I feel at home when I’m with people like myself. And I even got a job where everyone knows I have the virus.”
Some people living with HIV shared having to sneak out at odd hours to attend to their unwell family and friends. “Otherwise, people don’t treat their relatives well in the community,” a person living with HIV said. “Children are bullied in school because they are the daughter or son of people with HIV.”
The executive director of Lhaksam, Wangda Dorji, said that many people are now aware of HIV although at a snail’s pace. “But there are a lot of things to be done.”
He said that stigma and discrimination are the main challenges facing people living with HIV. “People still think sitting and dining with HIV positive patients will transmit the virus.”
Due to social stigma, he said that people living with HIV remained hidden and people do not come forward to test, widening the detection gap.
Wangda Dorji said that the lack of coordination between civil society organisations and health officials impede the advocacy’s reach in the communities.
Today, there are 204 people living with HIV registered with Lhaksam among 741 detected in the country.
The incidents were shared during a two-day workshop on media engagement on HIV and key populations that include transgender, lesbian, gay, bisexual, transgender, queer and intersex (LGBTQI), alcohol and other substance dependent and sex workers.
The workshop aimed to create awareness, provide visibility of the key population, and understand the issues faced by them.