Luh Sandat, 20, was daydreaming when the phone rang, “Don’t forget to take your pill,” reminded the caller, her friend Citra.
Luh took a pill from her daily dosage box. For two months now, she has been treated with antiretrovirals or medications for the treatment of HIV. The timing of doses is essential to effectiveness because the virus mutates rapidly. Luh takes three pills a day at regular intervals. She feels lucky Citra is there to remind her not to skip a dose.
Citra is one of 25 young people who belong to community group Sobat ODHA or Friends of People with HIV/AIDS, an initiative of Bali+.
Sobat ODHA volunteers come from diverse walks of lives and include university students, workers, journalists and members of other NGOs and religious groups.
Bali+ is a nonprofit organization that supports prevention and treatment among people with HIV on Bali. It also works with social groups who are perceived as being at high risk of HIV infection, including injecting drug users.
Dhayan Dirgantara, the coordinator of Sobat ODHA, said people with HIV required community support given the stigma and discrimination related to the virus. “It is our responsibility to help them. To ease their social, mental and physical burden,” Dhayan said.
The organization is inviting more people to become involved in its programs.
“You cannot sit around doing nothing but expect that everything in society is going to be OK,” Dhayan said.
HIV-related stigma is both disempowering people with HIV and discouraging the community from learning more about the virus.
There are dozens of people living with HIV on Bali.
Sobat ODHA’s main task is to inform HIV positive people about available treatment, call them to remind them to take their pills and be with them whenever necessary.
But the program has not been running smoothly. Many people the group approached were reluctant to discuss their experiences with “outsiders”.
“At first, it was not so easy to embark on honest and open friendships with them,” said Citra, who is studying medicine at a local university.
“Not everyone is willing to be involved in this program,” Dhayan said.
Awareness of the symptoms, diagnosis and treatment of HIV is alarmingly low, even among people with the virus. Support from family, close friends and the community is essential.
“One example, they (people with HIV) must have self-discipline, especially in regulating dosing. If they don’t take their pills on time, it can seriously impact on their health. Sometimes all they need is a friend to remind them,” he said.
Sometimes, they are also emotionally vulnerable. Then a personal approach and good communication skills can be really helpful.
For Luh Sandat having someone to talk to is invaluable.
“I don’t have any family here in Denpasar. I often feel quite lonely and need someone to share with,” said Luh, whose family lives in Bangli, 80 kilometers east of Denpasar.
Many of the people Sobat ODHA assists come from Java and other islands across Indonesia. “Everybody needs a friend and we are here to help ease their burden a little bit,” Citra said.[ni komang erviani, The Jakarta Post, July 20, 2006]