One day his family found him lying on the floor of his house, barely conscious. He was rushed to the hospital, where he was diagnosed with AIDS. At 48 kilograms and with a CD4 count of 83, doctors did not expect him to survive the night. A priest was brought in for his last rites.
“When I survived I thought about why I was saved, and I started thinking I could be useful to others like me who have AIDS,” said Aditya, who goes by the nickname Edo.
Today, Edo is the head of Indonesia AIDS Coalition (IAC), an NGO he co-founded in 2011 with four friends. Their mission, he explains, is to support people with HIV-AIDS, provide them with information about medical and support services and defend their basic rights.
“In Indonesia, if you are diagnosed as HIV positive, your future will never be the same again. You will experience discrimination, even from your family,” said Edo. “When employers find out you are HIV positive, they will fire you. When there is a job vacancy they won’t hire you if they know you are HIV positive.”
For this reason, many people avoid getting tested or seeking treatment, said Edo. So six months ago, IAC launched AIDS Digital, a mobile phone application that allows users to access information about HIV/AIDS information and medical services confidentially.
The first service of its kind in Indonesia, the app provides information about HIV testing and treatment services available across the country. The app can be downloaded from the Apple Store, Blackberry aapplication store and Google Play and used on iPhones, Blackberry and Android cell phones.
“So many people refuse to get tested. So we thought a mobile app like this would provide an easy and confidential way for people to get information about HIV and medical services available in their community,” said Edo.
There are an estimated 658,000 people living with HIV in Indonesia according to the Health Ministry. A recent United Nations report found new HIV infections in Indonesia have more than doubled in the last decade, rising to about 76,000 new infections in 2013.
Government clinics in Indonesia provide antiretroviral (ARV) medication free of charge to anyone who is diagnosed with HIV, but progress in meeting HIV reduction targets still lagged behind the rate of new infections, said David Bridger, senior policy adviser at UNAIDS Indonesia, which has provided funding support for AIDS Digital.
“Putting people in treatment early can vastly reduce the virus activity in the blood. The problem is most people are coming forward for testing and ARV treatment very late in the progression of the disease, when they are already starting to get sick,” said Bridger.
The AIDS Digital mobile app and accompanying website provide a directory of about 1,300 HIV health provider sites across Indonesia.
“This mobile application allows us to provide information on AIDS services that can be accessed easily by people across the country simply through the use of their cell phones,” said Lily Setyawati, head of the ministry’s Center for Health Promotion, which provides AIDS Digital with data on HIV services across Indonesia. “Given the high rate of cell phone users in Indonesia, especially among our youth, we think the application can be very helpful in urging high-risk populations to get testing and treatment.”
AIDS Digital features an “HIV 101” service that provides basic facts about HIV-AIDS that aim to debunk myths and misconceptions about the disease that discourage people from getting tested for HIV and perpetuate the stigmatization of people with AIDS.
“The majority of Indonesians see HIV-AIDS as a moral issue. Talking about sex is taboo. And the opinion of many people, including health providers, is that drug users, homosexuals and sex workers are sinners,” said Edo. “As a result there is a lot of misinformation about AIDS, what the virus is and how it is transmitted.”
The taboos surrounding AIDS present one of the biggest challenges in curbing HIV-AIDS in Indonesia. About 31,000 people died of AIDS in Indonesia last year, according to the Health Ministry. A survey by the ministry in 2011 found the highest prevalence of HIV among about 40 percent of drug users, followed by 22 percent of transgender people, or waria, infected with HIV.
Yulianus Rettoblaut, the head of Indonesian Transgender Communication Forum (FKWI), says she gets reports of as many as five people per week who die of AIDS in the waria community.
“Most of my friends who have died didn’t know they had HIV until the end. And many of them who know they are HIV positive don’t take the medication regularly,” said Yulianus, who goes by her community name Mami Yulie.
FKWI serves as a support group for the waria community, providing information on work and health issues, including AIDS, to its members. At 55, Mami Yulie remains free of HIV and goes for testing regularly. But many waria, she said, are reluctant to go for HIV testing or treatment.
“People in my community are often scared to go to the hospital when they are sick. And only a few hospitals accept transgender patients,” she said.
AIDS Digital provides a way for users to review and rate healthcare services to inform people of clinics and hospitals that discriminate against HIV-AIDS patients or provide poor services.
“Instead of compounding the HIV risk of key affected communities like waria, sex workers, drug users and men who have sex with men, we need to be working harder to treat them equally in terms of access to services. This means removing the barriers that they face in both prevention and treatment service access and provision,” said Bridger.
The ratings and reviews are also shared with the ministry to inform the government of gaps and problems in HIV-AIDS services at government clinics and hospitals around the country. “In this way AIDS Digital can also pressure health providers to improve their services,” said Edo.
Many hospitals often lack consistent stocks of ARV medication. The inefficient distribution of ARV stocks presents serious challenges for people with HIV-AIDS and for getting ARV medication to hospitals that need it, Edo explains. Many hospital requests for medicine stocks are still made through written forms that are sent to distribution centers.
AIDS Digital provides critical information about ARV stocks that notifies users where current stocks of ARV medication are available. Recently, IAC added a trial feature that uses SMS-based alerts to provide ARV medication reminders to users undergoing treatment.
“For people taking ARV medication, you cannot miss taking a pill for even one day. You must take an ARV pill every day for the rest of your life to survive this disease.”
The IAC continues to fundraise to promote AIDS Digital and is working closely with Health Ministry’s Center for Health Promotion to ensure data on the application on health providers and HIV-AIDS services are continuously updated.
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