An app that puts the power of feedback into the hands of people living with HIV in Indonesia
Mama, also known as “Scott” on the gay social networking app Grindr, is a transgender community health outreach worker in Solo, a city in Central Java in Indonesia. She works for a local NGO of gay, transgender and transsexuals called Mitra Alam. She uses Grindr to encourage men who have sex with other men to come forward and get themselves tested for HIV and other sexually transmitted infections. And if they need treatment she helps them get it. She is charismatic, nurturing and easily puts people who meet her at ease. Indonesia needs people with Mama’s skills.
The prevalence of HIV in Indonesia is low but that is of little comfort. In Indonesia the epidemic is expanding unlike most other countries in Southeast Asia. The majority of new infections are happening with men who have sex with men and the clients of sex workers. The vast majority of the former are not what would be called openly gay, which means that it is often challenging to reach them. Most sex workers, in turn, operate informally, outside of registered establishments or what were previously tolerated red light districts. These “indirect sex workers” are therefore also difficult to identify.
According to Indonesia’s AIDS Commission, the prevalence of HIV among the adult population was estimated at 0.4% in 2013, which is quite low. However, among key affected populations the rate is much higher: 41% among people who inject drugs, 8% and rising among men who have sex with men (MSM), 10% among female sex workers, and 3% among what are known as indirect female sex workers. Over thirty percent of new infections this year are projected to occur among ‘low-risk’ women, which could lead to an increase in mother-to-child HIV transmission.
These statistics only provide a partial picture. Most people with HIV have never been tested. So the prevalence in Indonesia is based on epidemiological projections. Perhaps even more troubling is that up to 80% of those who are tested do not know their results and are therefore highly unlikely to seek treatment or to practice safer sex.
Earlier this year, Integrity Action entered into a partnership with the Global Fund to Fight AIDS, TB and Malaria, the largest multilateral donor focused on curbing these three diseases internationally. The Global Fund has an annual portfolio of around $4 billion a year to support Principal Recipients in delivering services to curb these three diseases. Principal Recipients are usually Ministries of Health but they can include both national and international NGOs and some UN agencies.
My colleague Beth Turner and I spent two weeks in August working with one of the Global Fund’s Principal Recipients in Indonesia, Spiritia, an impressive NGO dedicated to working on HIV prevention and supporting people who live with HIV. Spiritia supports a network of more than 70 organisations across the country like Mitra Alam, where Mama works.
These organisations provide essential outreach to key affected populations. Most of the community health outreach workers are peers. They may be former injecting drug users, former sex workers, and other people who are well placed to reach out, encouraging the untested to get tested and know their results, the untreated to get treated, and those receiving treatment to stick to it.
While gay sex is legal in Indonesia, the context is not always hospitable. There are activists and politicians who make repeated motions to outlaw it. “Gay Sex May be Outlawed” was a front page story in the Jakarta Post when we were there. The article cites “a noted psychiatrist in the field of HIV and homosexuality, Dadang Hawari” who has said that “homosexuals were sexual deviants influenced by external factors such as a person’s social environment and could be healed through psychiatric treatment.” According to the article the Indonesian Psychiatrists Association classifies “homosexuality, bisexuality and transgenderism as mental illnesses.” And a recent survey by the Indonesian Survey Institute showed that “most Indonesian Muslims disliked LGBT people more than they disliked Jews, communists and Shiites.” In a country that is not always open to ensuring that people living with HIV get the health treatment and prevention they need, what Spiritia and its partners do requires both courage and tremendous cultural and political sensitivity.
Beth and I were in Indonesia to see if we could develop a customised smartphone app modelled on what we do with DevelopmentCheck that could be used by people who live with HIV. The app will do three main things:
Enable health service users to rate health service providers;
Inform health service users about their rights and entitlements and therefore make it easier for them to identify and report problems; and
Make it easy for them to give recommendations for improving the service if problems are found.
By addressing these three components, we aim to make it easier for people to know where they can get good health services and to give recognition to those who are providing the best services. The approach will also help to build trust between patients, health providers, the NGOs, like Mitra Alam, that support patients and ultimately also to donors and the Indonesian Ministry of Health. The Fix-Rate will be an important indicator in the measurement of how such services are improving in order to attract new beneficiaries and maintain the beneficiaries they currently serve.
Active engagement by people living with HIV is a core value of the Global Fund. This is the first time an app is being developed that puts the power of real-time feedback directly into their hands. The app will also give visibility to the critical role played by community outreach workers in supporting people who live with HIV.
Indonesia has an excellent network of community outreach organisations, with dedicated health outreach workers like Mama; almost all health outreach workers already own a smartphone; and in the focus groups, interviews and other meetings we held to get inputs and suggestions for the app, the response was universally positive: everyone thought the app was a good idea and that it was urgently needed. So despite some political and social challenges, Indonesia is a promising pilot country for the application.
This was just a first visit. In the coming months we will be developing a prototype and we aim to start testing it early next year.