Wanted: A Princess Diana to End the Stigma of AIDS in Sri Lanka

Monday, November 30, 2020 - groundviews.org

Photo courtesy of Twitter

When Acquired Immunodeficiency Syndrome (AIDS) was first discovered in the early 1980s, it was considered a lethal disease, easily transmitted and a death sentence to all who had it. People with AIDS were shunned and stigmatized; there were calls to quarantine them.

At the height of the epidemic in 1987 when Britain’s Princess Diana was invited to open a ward for AIDS patients at a London hospital, she shook hands with a terminally-ill AIDS patient without wearing gloves. It was an action that resonated around the world and shattered stigmas at a time when people were terrified of catching the disease.

The attitude to people living with HIV and AIDS has changed dramatically since Princess Diana’s unforgettable gesture. People know now that it cannot be transmitted by a touch while there are drugs that enable HIV positive people to lead a regular life without the fear of giving the disease even to their sexual partners.

“HIV is a manageable condition, with testing, treatment and patient care provided free of charge through a network of over 42 STI clinics across the country. However, the challenge has been to change the mindset around what we once knew about HIV and AIDS. HIV can affect anyone regardless of class, creed or sexual orientation and is not reflection of a person’s character,” said Sriyal Nilanka, an activist working to improve the lives of people with of HIV and AIDS.

“My sincere hope is that people will find ways to educate themselves and spread awareness about HIV and its current situation so we become more aware and accepting of people living with HIV. In this day and age, AIDS doesn’t kill anymore, stigma does,” he pointed out.

AIDS is a condition caused by the Human Immunodeficiency Virus (HIV). By damaging the immune system, HIV interferes with the body’s ability to fight infection and disease. HIV is a sexually transmitted infection and can also be spread by contact with infected blood or from mother to child during pregnancy, childbirth or breast-feeding. HIV weakens the immune system to the point where a person has AIDS. There is no cure but medication slows the progression of the disease and prevents early death.

Around the world, in 2019, there were about 38 million people living with HIV with 1.7 million new infections and 690,000 deaths.

Sri Lanka’s first AIDS patient was diagnosed in 1986. The estimated number of people living with HIV in 2019 was 3,600. Of these, 1,845 (51%) were taking antiretroviral treatment (ART). HIV infections are on the increase, according to the 2019 Annual Report of the National STD/AIDS Control Programme. UNAIDS figures showed that some 5,400 people have died of AIDS since 2008, averaging 500 each year until 2018 when the figure dropped to 200 because of the increased use of ART.

Sri Lanka has adopted the Sustainable Development Goal target of ending AIDS by 2030 and has accepted the challenge of achieving the target in 2025, five years before the rest of the world.

Despite the country’s low HIV prevalence, there are several risk factors that could drive the numbers up unless they are addressed. These include low condom use among high risk groups, the large number of commercial sex workers, untreated sexually transmitted infections, migration within Sri Lanka and emigration to the Middle East and neighboring countries, many injecting drug users, low levels of knowledge about HIV transmission and high levels of stigma.

“Even if we end AIDS By 2025, we will have about 3,600 persons to provide care for over 25 years. Without adequate work to create enabling environments for persons living with HIV, their friends and family life is going to be really hard,” Mr. Nilanka said.

Interviews with people living with HIV and AIDS across various sections of society revealed the still prevalent fear, suspicious and exclusion that they experienced on a daily basis.

When Shane, a 50 year-old businessmen and social worker from Colombo was first told he was HIV positive, he was hesitant to accept the results and concerned about passing it on to his partner. While his partner was supportive, his friends who were middle class and educated stopped talking to him and spread rumours about his status, which Shane found very hurtful.

Shane did not receive any counselling or psychosocial support through the HIV clinic and when the treatment started, he was severely depressed as a side effect and had to seek mental health support through personal connections.

He does not talk about his status in public. “I am scared that I will be humiliated and lose the reputation I have as a person. There is not enough information available to the public and even when I have to come out to specific people, I have to have long conversations explaining about HIV,” he said.

“I am afraid that people will not work with me after knowing my HIV status and that this will affect my livelihood and those who depend on me.”

Gayan, 37, is from Galle and works as a manager in a private company. When he first learnt he was HIV positive, he was certain he was going to die. He did not trust the information given at the clinic and discovered the facts about HIV on his own.

His HIV status is known only to his wife. “I can’t tell my mother because she will never understand and her reaction will be to cry. That will depress me further. If I tell my friends, there is a good chance that they will distance themselves from me.”

Gayan said that people still thought of AIDS as a deadly disease. “No one has any idea about HIV in the current context. We have not had any discourse around treatment or improvements that have happened over the years,” he said.

Chandani, 58, a housewife from Nikaweratiya, took an AIDS test in the late 1990s when she going to join her husband who was working abroad. The doctor who told her she was positive said she may die. She was scared, especially for her three children.

When Chandani told her husband, who was responsible for her condition, that she was HIV positive, he stopped communicating with her. Her mother-in-law, who was looking after the children, also avoided Chandani.

“My life was over. The only hope I had was my children. They are now adults and live their own lives. They don’t say anything but I feel sad to visit them or be around people. I have a small business that gives me enough money to live but I have no hope for the future. This wasn’t something I chose for myself. I still wonder why god has punished me,” Chandani said.

(The names have been changed to protect privacy).