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Breaking the silence, bit by bit By Feizal Samath COLOMBO - Kamalika Abeyaratne dedicated her life to caring for children in Sri Lanka and had a wide circle of friends, until she discovered she was HIV positive. "Most of my friends then stopped coming home. Some of my doctor colleagues still cross the road when they see me approaching," says the 66-year-old medical doctor and paediatrician, who now spends most of her time helping others living with HIV or with AIDS. When Abeyaratne declared, about five years ago, that she was HIV positive, the story made newspaper headlines. It was the first time any Sri Lankan had the courage to say he or she was HIV positive. Abeyaratne was infected with the HIV virus through a blood transfusion after injuries sustained in a road accident. Her openness about her health status is not the norm. "AIDS is a hidden phenomena in Sri Lanka and infected people are scared to talk about the disease. So the official figures are not very accurate," says Abeyaratne. According to latest government figures, the number of deaths from AIDS, up to the end of 2000 was 89. Reported HIV positive cases totalled 358, while the number of those with AIDS was 119. Officials also said an estimated 8,500 people could be HIV positive. The United Nations estimates however that there may be 80,000 persons in Sri Lanka infected with HIV by 2005. In Sri Lanka, HIV or AIDS evokes more public anger than empathy. Abeyaratne is chairperson of the AIDS Coalition for Care, Education and Support Services (ACCESS), a Colombo-based NGO. Formed in 1997, ACCESS helps and supports people with HIV/AIDS by visiting them in hospitals and homes. Last year, ACCESS launched Sri Lanka's first AIDS hotline, offering free advice to callers seeking information . The response, so far, has been good. The hotline has attracted 2,000 calls since January 2000. An estimated 800 callers have been followed up and have received various forms of help. AusAid, the Australian government's aid agency, has agreed to provide funding for the next two years for the ACCESS hotline project. Friends describe Abeyaratne's work as courageous, given the social stigma attached to people with HIV and those living with AIDS. "She is an extraordinary woman who has been discriminated against by society after serving her country as a dedicated paediatrician for many years in state hospitals in Colombo and rural areas," says Sherman de Rose, head of Sri Lanka's homosexual rights movement, Companions on a Journey (COJ). Rose, who is also ACCESS' executive secretary, said Abeyaratne now works hard to provide some kind of care for others with HIV and with AIDS. "To me she is the greatest HIV activist we have ever seen in this region," he says. Abeyaratne lives in a posh residential area in Colombo with her husband Michael, another well-known paediatric surgeon who gave up private practice to look after his wife. She occasionally travels around the country addressing seminars and workshops along with her husband, who also has become an HIV/AIDS activist. Perhaps her biggest disappointment was when no people with HIV or those with AIDS responded to a recent ACCESS invitation for a meeting to discuss care and support for patients. "We ran advertisements in the newspapers and issued a press release asking patients to call over for a meeting on May 6. Nobody came. It was big blow for everybody. About 60 callers had responded to the hotline on the invitation, but they did not turn up," she says. But Abeyaratne took heart after listening to the views of experts at an HIV/AIDS conference in New Delhi on June 1, which was organised by Sahara House, an HIV/AIDS support group. "If they don't want financial help and are happy the way they are, don't change their lives," she was told. The Sahara House meeting, which was sponsored by UNDP, discussed ways of empowering HIV positive people in South Asia. "We were encouraged to set up a network and launch projects with this in mind," Abeyaratne says. In recent months, Abeyaratne has spoken to groups like the Rotary and Jaycees clubs, urging them not to throw out of employment any person who has HIV or who has AIDS. "This is the first time in the region perhaps that we are trying to preserve the employment of AIDS patients," her husband says. There is still a lot of ignorance in the country on how HIV is transmitted . According to the findings of an ACCESS survey on AIDS awareness among youth last year in the Sri Lankan capital and its periphery, many teenagers believe HIV is transmitted through mosquitoes, swimming, sharing cups and plates, using the same clothes, handling money, kissing or hugging. Forty percent of the 1,000 students who responded to a questionnaire to ascertain their general knowledge, attitudes and practice regarding reproductive health, STDs (sexually transmitted diseases) and HIV/AIDS, revealed that they obtain information on sexual health from their parents or other family members. Following this survey, ACCESS held a landmark seminar for school children in Colombo. Another similar study has been conducted in the central region and ACCESS plans to do one also in the north-central province. "The central region survey where we looked at awareness and attitudes was an eye-opener. Some 25 percent of the participants, including teachers, lacked any knowledge of HIV/AIDS, and some teachers hadn't even seen a condom in their life," Abeyaratne says. Talking openly about her illness has helped Abeyaratne cope with the stigma which keeps HIV and AIDS hidden in Sri Lanka. "What did I feel when I first learnt I was HIV positive? Shock, disbelief, fear, anger, sorrow and finally resignation," she says, recalling those first few difficult days after she was told. "But then I thought maybe talking about it would help me and also others who are suffering from it." The doctor often starts her presentations with: "I am HIV positive". She concedes, however, that an upper class background, plus the fact that she was infected through a blood transfusion and not sex, helped her to go public. "I don't think I would have appeared in public saying I am HIV positive if it came from sex," Abeyaratne adds. "My husband and family have been very supportive. So have been some of my friends." |
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