HEALTH-SRI LANKA: Struggling Against Myths About HIV/AIDS

By Feizal Samath Reprint | | Print |

Feizal Samath

COLOMBO, Nov 27 1997 (IPS) - People infected with HIV/AIDS in Sri Lanka have to deal with not just the trauma of a disease that leads to a complete breakdown of the immune system, but the humiliation of social ostracism.

The illness continues to be considered extremely contagious, and myths abound of how even touching a patient would be a sure death sentence.

Even doctors and nurses in the capital city Colombo are known to refuse to attend to HIV/AIDS patients. A small NGO which cares for such ostracised people say they often find patients lying in soiled beds during their rounds in hospitals.

“A certain amount of frustration creeps in when nurses or doctors stop caring for these people,” says Sally Hulugalle of ‘Nest’, an appropriate name for a group that describes itself as “a place you can fly to in a crisis”.

“Our volunteers care deeply for these ostracised people and ensure that they receive the attention given to other patients,” ‘Nest’ executive director Harini Amarasuriya asserts.

The group is a charity that spurns four-wheel drives, the vehicle favoured by NGOs, and travels on mopeds or walks to help the forgotten and ostracised people, like AIDS infected and street children.

The first case of HIV was detected in 1987. The figure has gone up to 200 officially, but off the record experts agree the more likely figure of infections would be more than 6,000. So far 60 people have died of the 75 known cases of people dying.

Heterosexual relationships are the most common route of infection. Apart from some 12,000 commercial sex workers on the island, tens of thousands of women and men live away from their families as migrant workers abroad and in the Free Trade Zones where casual sex rates are very high.

According to projections contained in a United Nations Development Programme (UNDP) commissioned report, Sri Lanka could by the year 2005 have as many as 80,000 cumulative cases of HIV infection with an HIV prevalence rate of 0.54 percent among the population aged between 15 and 64.

There are some 40 NGOs who claim to be doing work among HIV/AIDS people.

Some stand out because of their work, like the Community Front for Prevention of AIDS (CFPA), which is an advocacy group, organising seminars and counselling services in Colombo and in the southern beach resort towns of Bentota, Hikkaduwa, Galle, Tangalle and Matara, which draw thousands of tourists every year.

Lawyer Mallika Ganasinghe of CFPA says commercial sex workers. are the target. “We select beach boys and female sex workers with leadership qualities and train them to be counsellors. These peer-educators in turn talk to others making them aware of AIDS, other sexually transmitted diseases and the need to use condoms,” she explains.

She emphasises that the NGO does not ask sex workers to give up their “work”. Instead “particularly in the case of streetwalkers who are shabbily dressed and as a result poorly paid by their clients — we tell them to dress better and be clean, so they get a better fee and need fewer clients to make the same amount of money … The fewer clients the less chance of contracting disease,” is her opinion.

The group of ‘Nest’ volunteers are also trying to make a difference. They are probably the only group that looks after the families of HIV/AIDS infected, even after the person dies.

“Our work does not end after someone dies. We are concerned about the family and help them to face the future,” says Amarasuriya.

Their work is widely appreciated in Sri Lanka. Says Hemamal Jayawardene, the U.N programme officer in Sri Lanka in charge of HIV/AIDS programmes: “I had not seen the men and women behind it until last year when I was invited to make a presentation on ‘HIV and Human Rights’ at one of their seminars. Here I met a group … dedicated to the work they were doing. I failed to see what they were getting in return. In fact I still do not.

“For them, a neglected child, a violated woman, a man living with the HIV virus were all the same. They were all part of the human family,” he adds. Jayawardene is now part of the group and a Nest board director.

It was the same dedication that impressed Dr Diyanath Samarasinghe, one of the country’s most eminent psychiatrists and patron of ‘Nest’. In the group’s 1996-97 annual report, he wrote: “I discovered last year that I came away from Nest feeling more

affection and respect for individuals I met there than perhaps I would have felt if I had met them elsewhere.”

At a women’s mental health hospital, ‘Nest’ workers found women patients were tied to walls for several hours. They were untied. “Nest work is not about grand schemes of sweeping visions. It is a continual slog,” says a member.

Their biggest challenge is to try and convince HIV/AIDS patients to live a normal life. “Through counselling and care we try to enthuse them to get on with their lives,” she adds.

Hulgulle recalls the day Nest workers persuaded hospital authorities to allow an AIDS patient, who was dying, to return home, which is not the normal practice. A Muslim, the patient had pleaded to be taken home. “He had tears of gratitude in his eyes when he got home, and died half an hour later,” she said.

Since a Muslim must be buried within 24 hours, Nest stepped in to speed up the generally long process of getting a death certificate and other formalities, and even paid for funeral expenses, as the relatives were reluctant to touch the body.

Hulgulle admits she is sometimes worried for the volunteers, because they don’t wear any protective gear, taking only standard safety precautions. “Such is their dedication,” she maintains.