Reaching out

The Star Malaysia

Story and picture by ANNE HASLAM

A Unicef-funded NGO’s efforts to help a group of people trapped by the ravages of HIV/AIDS have proved successful.

SINASAMY*, 45, is lying weakly on the sofa in his Paya Nahu flat in Sungai Petani, Kedah. He had been having a fever for a while and severe abdominal pain, and his testicles and lymph nodes are swollen – all signs that suggest the onset of full-blown AIDS. Having tested positive for the HIV virus in 1995, he has only now started showing symptoms of the disease.

Although an intravenous drug user for most of his life and having been in and out of jail for the last 25 years, his wife and children bear no anger towards him. In fact, when asked about it Nagamah, 41, said she could not be angry when he was already so sick. She goes about her chores cheerfully while tending to the needs of her husband in their two room Government flat where they live with their three children, Primala, 20, who is mentally retarded, and 19- and 17-year-old Rakesh and Sarala who are working in a factory. Primala has never attended school and the other two dropped out in Year Six due to poverty.

Sinasamy seems to have no regrets that his prolonged use of drugs had led him to this situation. “At least I got the virus from using drugs and not from prostitutes,” he boasts. His two working children continue to feed his habit by spending some RM100 every month on drugs to lessen his pain. They don’t want to see him suffer and would rather buy the drugs than pay the RM20 taxi fare to the hospital, which they say they cannot afford. Because of his continuous drug use, Sinasamy has defaulted many times in his treatment, taking only paracetamol for his fever and pain.

Besides Sinasamy, there are at least eight other registered cases of HIV/AIDS in the Paya Nahu flats, four of whom, including a child, have since died. They suffered the same fate due to their ignorance and apathy to their condition.

This, however, may only be the tip of the iceberg as Paya Nahu is a high-risk area where poverty and ignorance have forced many to turn to drugs as a form of escapism. An informal survey by a non-governmental organisation (NGO) shows that there were more than 500 drug addicts in the area and one, who is now in a rehabilitation centre, was arrested 36 times.

The Paya Nahu flat residents, who total around 3,000, were former slum dwellers who were relocated by the state Government. About 60% are Malays, 30% Indians and 10% Chinese.

Over a year ago, Prostanita, a Unicef-funded NGO, started reaching out to the womenfolk in the area by organising monthly sessions to educate them on HIV/AIDS as well as empower them to make good decisions and choices.

Chairwoman Dr Meera Koay said the women, among them 40 single mothers, had a poor educational background and lacked knowledge of HIV/AIDS, which made them a vulnerable group. The women were targeted as they are vital links to their families.

“We started by educating the women on the dangers of HIV/AIDS. We also taught preventative measures and safe sex to wives of HIV-infected drug addicts and are also empowering them through learning skills so they can become self-supporting,” said Dr Meera.

The former Kedah deputy health director said the sessions for the womenfolk included small group discussions with question-and-answer sessions and was a place to share their real life stories in an open and non-discriminatory manner. Many of these women were afraid to come out and talk about their problems for fear of stigmatisation, which was one of the topics at a recent session.

Sadly, the poverty situation in Paya Nahu has made the residents apathetic and Prostanita had to become the link between them and the health services. The organisation’s 15 members often had to make arrangements for hospitalisation, and on one occasion a member had to call for an ambulance when an HIV-infected person refused to go to the hospital despite being severely ill. Prostanita also arranges for HIV blood testing from time to time.

Part of the organisation’s work at Paya Nahu is to make home visits to the HIV-infected families and offer emotional support and counselling, at the same time tracing defaulters who stopped treatment. They also help with poverty eradication by getting the residents the necessary benefits from the Social Welfare Department and other relevant authorities.

The women-to-women programme has proved successful as those who received training at the sessions are disseminating the information to friends and neighbours in the flats. Prostanita is able to reach 35 women directly as they regularly participate in the sessions.

To attract the women to the sessions, activities like cooking and make-up classes as well as medical camps are held and the women are also given gifts as incentives for their attendance.

“We estimate another 100 women and between 600 and 700 children are reached indirectly and will benefit from the sessions”, Dr Meera said with the hope that Prostanita’s ongoing efforts in Paya Nahu will bear fruit.

School leaver Kogila Gunasegaran, 19, who has not missed a session since the programme started, said she has benefited greatly and was now using the information and knowledge to reach out to others. Kogila, who helps her mother at a food stall at the flats, said she speaks to everyone she meets about the HIV/AIDS virus and since attending the talks and sessions, is more confident to share what she knows with others.

Dr Meera was grateful that Unicef had chosen to fund Prostanita’s activities for low-income residents. A representative visited the area recently to shoot video footage for a programme.