Deradjat Ginandjar Koesmayadi

Derajat Ginandjar “Ginan” Koesmayadi is transforming public education, particularly the treatment of and attitudes toward those with HIV and drug addiction in a way that benefits all segments of society. Ginan communicates health education to youth in a way that is both understandable and credible, while also providing comprehensive care in a safe environment for those affected. He also advocates new policies against the criminalization of drug users and demands care from government health facilities. Ginan models the positive role that HIV positive citizens can play in Indonesia’s future.

Ginan positions recovering addicts and those diagnosed as HIV positive as the leaders of effective prevention, care, and social integration. He has realized through his personal experiences as an HIV positive patient, that the best way to approach the social stigma around HIV/AIDS and recovering drug addicts is through a holistic angle. Therefore, Ginan addresses the social components as well as the treatment components of this problem. To better integrate HIV/AIDS and recovering drug addicts into society, he uses sports and music to combat the societal misconceptions of HIV/AIDS. To help treat and empower affected individuals, Ginan has developed a peer-to-peer treatment program and economic development training as opportunities for them to become active self-sufficient members of the community. Addressing all of these angles, Ginan’s program is unparalleled in its approach.

Courageously, Ginan founded Rumah Cemara, a program and treatment center modeled on his own experience as an HIV positive individual. With his program, participants prove that former addicts and HIV positive people can be healthy, productive workers and community members. Rather than remaining anonymous victims, through this program, HIV patients step out of the shadows and successfully integrate into society. Through the Rumah Cemara outreach program, they become counselors in hospitals and among high-risk groups. Ginan’s community development programs also create opportunities to volunteer in mobile health clinics, which provide basic healthcare to suburban communities.

Ginan has also found that universal interactive mediums such as football and music facilitates person-to-person interaction, and are powerful means to dispel myths about drugs and HIV. Integrating these activities into his program, Ginan is effecting social impressions. His program has had already pioneered strong relationships with partners such as USAID and Football for Life, and he will use these networks to scale and franchise his work throughout the region.

The number of reported incidences of HIV in Indonesia is low, but many national and international health agencies indicate that the prevalence in Indonesia is actually much higher. Out of the 24,131 reported HIV/AIDS cases (2010, Directorate General CDC & EH, Ministry of Health, Republic of Indonesia), 9,242 are recorded as infected from intravenous drug use (IDU), ranked second after heterosexual transmission. Young adults (20- to 29-years-old) are most affected with 11,438 cases of HIV/AIDS and 5,438 cases of HIV from IDU.

The first case of HIV/AIDS in Indonesia was documented in 1987: Presumably a homosexual Dutch tourist, who died in Sanglah Public Hospital in Bali. The first generation approach to dealing with AIDS focused on the individual and emphasized access to information and treatment for those HIV positive, as well as a focus on public awareness. Yayasan Pelita Ilmu and then the organization Spiritia (founded by the late Ashoka Fellow Suzana Murni) were the pioneers of this generation to stop the epidemic. A second generation of solutions focused on the empowerment of the HIV positive community, which included both those affected and infected by HIV. Much of the emphasis at this time was on a peer group support, led by Ashoka Fellow Daniel Marguari.

As a result of the spread of the disease, the advent of ARV therapy, and the increase in intravenous drug use, especially among young Indonesians, controlling this epidemic requires a third generation of innovation. This next phase of innovation must consider the current reality of HIV/AIDS in Indonesia, which requires attention to the cultural conceptions of the disease and stigma as well as IDU prevalence.

AIDS is now often treated like a chronic disease—implying that people can be in good health, yet still experience symptoms of the disease (much like diabetes or asthma). However, the stigma remains for those HIV positive. These individuals face discrimination in healthcare and employment. Hospitals and clinics often turn them away or charge them an extra fee for services. HIV screening is not confidential and thus hinders employment opportunities for HIV positive people. Those living with HIV are often rejected at home, and are considered a “disgrace to the neighborhood.”

The prevalence of injection drug use, closely linked with HIV, exploded in Indonesia in the late 1990s. At first it was most common among middle- and-upper-class young men injecting heroin, which spread HIV quickly through shared needles. Surveys in the early 2000s found HIV prevalence levels among drug users at around 80 percent. Now Indonesian IDU is estimated to reach 1.9 percent of the total population, which implies around 4.75 million people (Badan Narkotika Nasional, 2009). Geographically, Jakarta and West Java are reported as the 1st and 2nd highest prevalence nationwide for HIV positive IDU cases.

The lack of accurate information combined with growing stigma around HIV has contributed to the spread of the disease. Both the government and the general population consider HIV to be “someone else’s problem”—referring to homosexuals, sex workers, Western culture, immorality, and God’s punishment. HIV positive individuals are considered either objects of pity or accusation. Seminars and campaigns about HIV/AIDS are targeted to health professionals and high-risk groups only, but not to the “average” HIV positive Indonesian. Campaigns against drug use employ scare tactics, threatening IDUs with AIDS and death. This is a disincentive for HIV positive individuals and IDUs to seek help. Furthermore, young people tend to feel invincible and curious, and simply ignore the warnings. The fear of stigma, rather than the infection itself, makes addicts reluctant to go for voluntary testing, resulting in higher infections among youth, sexual partners/spouses, and babies.

Often considered a problem of immorality, substance addiction among youth is treated in two ways: Addicts are sent either to jail or religious boarding schools. Law no. 35/2009 declares addicts as criminals, which is in stark contrast to the World Health Organization’s definition of addiction as a “chronic relapsing disease.” Between 1997 and 2008, the number of addicts detained increased 56.8 percent. Instead of focusing on drug dealers and their syndicates, the police chase and jail addicts, denying their rights to adequate healthcare and rehabilitation. Therefore, they continue to spread hepatitis C and HIV infection.

Ginan is the founding director of Rumah Cemara, one of Indonesia’s most effective and well-respected non-profit drug rehabilitation programs. Reflecting on his own experience as an HIV positive former IDU, Rumah Cemara was established as a place to feel accepted, to get adequate and accurate information, and to access care. To serve addicts, Rumah Cemara provides a treatment center that uses the 12-step and therapeutic community model. For IDUs and HIV positive people, peer support groups are established, which include those affected such as family, spouses, and friends. To reach out to more IDUs and HIV positive citizens, Rumah Cemara created Bandung Plus Support, a network of more than sixty peer support groups serving more than 5,000 HIV positive people in West Java. Ginan is also active in harm reduction programs among prisoners, sex workers, and high-risk men.

However, Ginan realized that the core strategy to tackle IDU and HIV must be to have the whole of society realize that this is an Indonesian problem and challenge. Unlike previous generations, today’s HIV positive people can be active members of the community: They can work, socialize, play football, and enjoy themselves. It is time for peer support groups to break out of their isolation, move beyond their private circle of HIV positive individuals or former addicts and into the public realm. Starting with sport and music events, Ginan engages the public and focuses his approach on integration.

On Ginan’s football team, Interminal (eleven of thirteen players live with HIV), he has programmed regular training with amateur and professional football players. After 90 minutes of play, he engages players, both IDU/HIV positive and regular teams in post-game movies and discussion about HIV/AIDS. Most of the non-HIV positive team members are initially surprised that people with HIV can actually play football and even win. Since 2009 Ginan’s program has reached more than 1,000 people through football, with some of them even requesting a rematch. As a result of this cross-cutting strategy, stigma against HIV positive people is slowly diminishing. Rumah Cemara also managed to engage a professional city squad player as a volunteer-campaigner-player. Ginan became the national organizer for the Indonesian team, attending the global Homeless Street Soccer World Cup.

With his punk rock band, Mood Altering, Ginan also actively participates in indie music festivals and shows. During these popular youth events, he mobilizes all performing bands to speak out for drug prevention, for understanding and acceptance of HIV positive people, and to take up other social issues. Ginan has performed in prisons, campaigning on HIV/AIDS, and has received coverage from MTV. Rumah Cemara also uses community development initiatives to achieve his goals of breaking the barrier between discriminated groups and the general population. For example, Ginan organizes mobile clinics for underserved peri-urban communities, where HIV positive members and former IDUs serve as volunteers.

In terms of prevention, Rumah Cemara has trained its staff and members to get involved in harm reduction programs in prisons. For outreach to HIV positive populations, Rumah Cemara has offices in three locations (Bandung, Sukabumi, and Cianjur), which has resulted in strong relationships with hospitals, encouraging its members to seek health services and antiretroviral treatment. Rumah Cemara staff goes to clinics and ask people what kind of support they need, telling them about Rumah Cemara’s programs and how to join. They also encourage doctors to promote their sports program.

To sustain itself, Rumah Cemara facilitates recovering addicts and HIV positive people to gain economic development and resource mobilization skills. In its “For Life” campaign, Rumah Cemara works with reputable universities to integrate outreach campaigns and fundraising at student events. Small business development trainings are also held, to provide income generation opportunities such as an Internet café and motorbike washing services. Rumah Cemara is also building partnerships with donor agencies, such as USAID, Nike-Ashoka Changmakers, and Football for Life. This will allow more players to join their football program, and expand three Rumah Cemara affiliated football teams in the prisons of Bandung.

Ginan envisions a world where all HIV positive people and ex-addicts can become changemakers by bringing the change first to themselves. Thus, he is creating a critical mass of living examples to model the true meaning of positive living. This process enables him to focus on changing policies and laws. Confidence and networks are growing with media attention. For example, one peer group in Sukabumi succeeded in overturning a local court decision against a drug user from a jail sentence to compulsory rehabilitation.

Ginan actively participates in global networks, among them the International HIV-AIDS Alliance where Rumah Cemara is the official linking organization for Indonesia. At the national level, Rumah Cemara is building strategic partnerships with the government’s National Commission on AIDS and the National Bureau of Drug Abuse, as well as citizen organizations like Spiritia. Through these networks Ginan invites and facilitates others to replicate his model as he works toward improving policies and laws.

Ginan comes from a middle-class family. His parents were divorced when he was around the age of two, so he moved in with his father, stepmother, and three younger siblings. He describes his family as dysfunctional, as he felt his parents were not playing their part. In an effort to attain self-confidence despite being the smallest in his class, he began experimenting with drugs in junior high, first with an antidepressant drug, and then trying alcohol, and finally heroin.

Ginan’s addiction became serious during high school and his university days, and he began to steal to acquire his drugs. He was sent to a religious boarding school twice, where he was beaten as part of the treatment. Ginan was also imprisoned three times, and was kicked out of his home in 1999. It was not until three years later that he sought out a drop-in center at a Malaysian-based rehab center. Ginan was sent to Kuala Lumpur, and learned upon screening that he was HIV positive. Having once thought that only gay people could contract HIV, he was in denial at first. However, with support from an HIV positive IDU counselor in the therapeutic community, Ginan overcame the situation and the addiction.

Feeling lonely, in 2002 Ginan was one of the first Indonesians to “break the silence” and go public about his HIV infection. It was during this time that he became acquainted with Spiritia and felt he emotionally fit in. After working in a Bandung-based rehab center serving high-income youth, he thought of expanding the access to serve everyone in need. Ginan started Rumah Cemara as a self-help rehab center in 2003 with four colleagues, and Bandung Plus Support as a peer support program.