Anton Muhajir, Contributor, Karangasem | Mon, 12/01/2008 10:59 AM | Bali
Life for Ketut Sari (not her real name) is more than complicated. The 25-year-old has to struggle not only with poverty but also with the deadly HIV inside her body.
Living in one of the island’s poorest and most isolated hamlets does nothing to help her situation.
Sari lives in a hamlet in Datah village in Abang district, Karangasem, about 150 kilometers east of Denpasar. It takes two and a half hours to drive to her place from the capital. The last leg of the trip involves navigating a dirt road through rough terrain.
Once every two weeks Sari sets out on the rough trip for her regular appointment with a medical team in Denpasar. The team gives Sari treatment against the HIV and monitors her health.
Sari’s husband passed away six months ago after a bout of HIV/AIDS-related diseases. Only after his death did Sari learn she too was infected.
The realization came gradually. Initially, she suffered from various opportunistic diseases closely associated with HIV/AIDS. Voluntary Counseling and Testing (VCT) at Denpasar’s Wangaya hospital confirmed that she had the virus. By then, the opportunistic diseases had already taken a major toll on her health.
“My husband was probably the person who infected me,” she said, pointing out that she had never participated in high-risk behaviors, such as having more than one sexual partner.
She also admitted her husband was an intravenous drug user (IDU) who often shared his needles with fellow users.
After the death of her husband, Sari left the house of her husband’s family and returned to her own family’s house.
“My husband has died so he won’t be around to take care of me, so it is better for me to return to my family and let my own parents treat me,” she said.
Her parents’ house is no different to the other houses in that low-income community. The floor is dried mud, the walls made of woven bamboo and the roof of dried grass. The house has only one bedroom.
Sari now spends her days weaving tiny pandan mats that Balinese Hindus place on shrines. She can make up to 10 mats per day and sells 50 mats for Rp 10,000 (less than US$1). The money goes toward paying for the family’s basic daily needs.
“The money is not enough to buy meals let alone to buy medicine for my treatment,” she said.
Sari has not taken an ARV (anti-retroviral) cocktail yet because she is still in relatively good health. However, she must undergo specific therapy to prevent her physical health from deteriorating as well as to ward off any opportunistic diseases.
Her financial condition and the remoteness of her hamlet make it difficult for her to access proper health services, she said.
Sari is only one of many. Wayan Wati (not her real name), a 24-year-old from Duda village, Sibetan district, Karangasem, has a similar story.
Wati was infected by her husband and learned about her HIV status during a prenatal medical check at a local hospital. Wati immediately joined the Preventing Mother-to-Child Transmission program offered by the Sanglah Central Hospital.
Currently, Wati receives ARV therapy from Sanglah’s VCT clinic. Once a month, she travels to Denpasar to take her medication. Her husband is a truck driver who plies the Denpasar-Karangasem route, but sometimes he is too tired to drive Wati to hospital.
“I often have to go to Denpasar alone,” she said.
Sari and Wati are representative of people living with HIV/AIDS on the island — people who live in rural areas and have to travel long distances, between 100 and 150 kilometers, to fetch their medicine from Denpasar hospitals.
The local hospital in Karangasem has yet to offer ARV therapy, but it already has the capacity to carry out regular medical checks for people living with the disease. Nevertheless, the patients prefer the Denpasar hospitals.
“We will have to start all over again if we enroll at a local hospital,” Sari said.
“Moreover, we fear the staff at the local hospital will interrogate us, asking many awkward questions and, most importantly, we are afraid that our neighbors will learn about our status if we seek treatment at the local hospital.”
Coordinator of Care, Support and Treatment at Bali’s Commission for AIDS Eradication, Dr. Tuti Parwati, said people living with HIV/AIDS in rural areas experienced a number of difficulties in accessing health services in local hospitals.
“Local hospitals do not have sufficient facilities and (people living with HIV/AIDS) are afraid of being discriminated against and stigmatized once their communities learn about their status,” she said.
The commission has launched a training program targeting healthcare workers in the island’s rural Community Health Centers (Puskesmas) to increase their skills and knowledge in dealing with the disease and helping those living with it.
Coordinator of support for people living with HIV/AIDS at the Hatihati Foundation, Made Putri Stuti said, said people from low-income communities faced multiple problems.
“Besides the difficulties in accessing proper health services, (they) also can’t buy important food supplements because of their financial situation. Food supplements are important for people living with HIV/AIDS to maintain their physical health,” she said.
To assist those from low-income families, Hatihati, in cooperation with the Global Fund and Kerti Praja foundation, recently provided them with free formula milk.