Samsuridjal Djauzi is pioneering a comprehensive approach to address the HIV/AIDS epidemic in Indonesia by changing the medical infrastructure for diagnosis, treatment, and prevention.
The New Idea
Since the 1980s, Samsuridjal has engaged with the HIV+ community: teenagers, teachers and schools, medical students, doctors and health providers, policymakers, pharmaceutical companies, health posts and hospitals in Indonesia.
Samsuridjal realized that young people had little knowledge about HIV/AIDS were at the highest risk for it. He developed a shared-information system in reproductive health among students. To reduce their risk, Samsuridjal equipped them with life skills to make more informed choices and influence their peers. Through the endeavor, he cultivated student peer counselors to do outreach programs. Currently, hundreds of high schools in Jakarta and other cities across Indonesia are replicating the model. At the grassroots level, Samsuridjal develops curriculum on community-based prevention of mother-to-child transmission, which he began in Jakarta. Over years the program has been replicated by different organizations in six provinces: Banten, West, Central and East Java, South Sulawesi, and Papua. He also developed workshops which function as the center of HIV/AIDS education where People Living with HIV/AIDS (PLWA) gain community support. Through voluntary activities, the workshop has given birth to the HIV support group initiated by the late Ashoka Fellow Suzana Murni.
Along with public education and community support as prevention measures, in 1984 Samsuridjal co-founded an AIDS medical working group involving RSCM Hospital and the Faculty of Medicine, University of Indonesia. He developed safety protocols and provided training for medical professionals, as part of his advocacy attempt for the acceptance of AIDS patients in hospitals. Now, almost every hospital accepts patients with HIV/AIDS and is able to conduct surgeries when necessary. Many doctors have also become capable in diagnosis, as indicated by 70 percent of HIV/AIDS patients in Jakarta going to the hospital for treatment after being referred by a general practioner or specialist. Samsuridjal also advocated for free ARV (antiretroviral) therapy, since most of PLWA cannot afford the treatment. Over five years of continuous efforts, he has been successful in making the ARV generically produced by a local pharmaceutical company, and provided for free by working with the government and the World Health Organization (WHO). To date, subsidized ARV therapy has assisted around 4,500 people.
As the disease grows and spreads, around 60 percent of PLWA in Jakarta have Hepatitis C co-infection and 18 percent Hepatitis B co-infection. Therefore, Samsuridjal is committed to enhance prevention measures and use treatment as HIV prevention, so that the hepatitis virus test would be used as a gateway to reach the goal of testing more people for HIV. His future goals involve fighting for Hepatitis (B and C) drugs and test kits that are more affordable.
In the last fifteen years, HIV/AIDS has become an epidemic in Indonesia, which is considered the fastest growing country for HIV/AIDS in Asia. There have been more than 24,482 HIV/AIDS cases officially reported and 4,603 people have died. Of the cases reported, more than 50 percent were under thirty years of age, and a growing number of infants contract the disease through the womb or being breastfed. The primary mode of transmission, however, intravenous drug injection accounts for over 50 percent of HIV infections.
Risky sexual behaviors and the exchange of used needles among injecting drug users have increased the likelihood of HIV/AIDS spreading to the general population. Awareness of HIV status among at-risk and the general population is low. Furthermore, stigma and discrimination persists and many people living with HIV hide their status for fear of losing their jobs, social status, and the support of their families and communities. The same fears underlie resistance to testing. One of the main obstacles in treating PLWA in Indonesia is the complicated process of testing. An estimated 300,000 people in Indonesia are infected with HIV, however, only around 40,000 are diagnosed. Increasing the rate of testing is one of Samsuridjal’s highest priorities during the next year.
This priority reflects how the problem includes both constant and evolving elements. When Dr. Samsuridjal began his work, there was no infrastructure for prevention or treatment. The government, health providers, and services were not yet ready to respond to the emerging epidemic. There was no standard operating procedure at clinics and hospitals to diagnose and treat HIV+ patients. Testing kits and ARV therapy were expensive—and imported—restraining the HIV+ from affordable access to ARV therapy. Limited knowledge about HIV/AIDS among government officials and medics, and lack of knowhow in medical treatment caused hospitals to reject patient with AIDS.
Despite improved medical systems due to Samsuridjal’s work, the challenge in the spread of HIV/AIDS continues to emerge in a younger generation, multi groups and in rural areas. The Ministry of Health stated that 30 million people are infected with hepatitis—this ranks third in the world after India and China. Medical records of HIV+ people show that 60 percent are co-infected with Hepatitis B and C. The testing for Hepatitis virus is as needed as for HIV. Nonetheless, people are still reluctant to undergo Hepatitis testing, let alone HIV. Medical doctors, especially medical students, have few counseling skills to properly encourage people to undergo testing and counseling. Many parties perceive Hepatitis and HIV as two separate challenges. Dr. Samsuridjal is increasingly addressing them together at the leading edge of prevention.
Samsuridjal’s main strategy to improve the medical infrastructure in HIV/AIDs prevention, testing, and treatment is by creating partnerships with different stakeholders. In approaching prevention Samsuridjal developed communication, information, and education strategies for school age groups in 1986. Through campaign activities he disseminated prevention information on HIV/AIDS to engage high school students despite initial rejection from school officials. He creatively integrated health issues as part of the overall life-skills training package given to students. One of the important issue in life-skills training is developing the students’ ability to make their own decisions despite the influence of their peers. Since Samsuridjal identifies sexual issues as a rational part of a smart decision process, teachers and parents are able to accept the concept. Through the activities he has cultivated peer counselors among students and teachers. Beyond school activities, he also developed other communication tool kits and pioneered a magazine dedicated to people living with HIV. With help from his colleagues, Zubairi Djoerban and his wife Sri Wahyuningsih established Yayasan Pelita Ilmu (YPI) in 1989 to further introduce HIV/AIDS preventive measures and mobilize support for PLWA and their families With the successful school model, they received support from USAID and were able to replicate the model in hundreds of high schools in Jakarta.
With his colleagues, Samsuridjal set up the Study Group in 1986, which focuses on HIV/AIDS research, including ARV medicine, and therapy. Through the Study Group, Samsuridjal has made changes in the health service provider sector. For example, the RSCM Hospital agreed to conduct the first Elisa HIV test and allowed Samsuridjal to be the first medical doctor to treat and conduct surgery on a patient with AIDS. In 1997, he developed standard operating procedure (SOP) for HIV diagnoses and therapy; which years later became the national standards for all hospitals and health clinics in the country. Together with the Study Group, he developed the curriculum for medical faculty and set up an internship program for medical professionals in RSCM Hospital and Dharmais Cancer Hospital to handle HIV cases.
In addition to medical problems, PLWA also face discrimination and stigma from their families and society In 1995, with the issue of this stigma in mind, Samsuridjal set up a shelter called Workshop Sanggar Kerja for PLWA (ages 13 to 15) as a temporary home where the family can stay together before they return home. He also approached the neighbors of the family and set up the Workshop as a village youth activity center, through which he provided introduction to HIV/AIDS and integrated PLWA with their communities. In addition to life-skills, the Workshop provides small business skills training for PLWA and village youth, i.e. fisheries, husbandry, and gardening. They are supported with working capital and connected to successful businesses so that they can set up their own business. Outfitting the site with a camping ground and out-bound training facilities, it also becomes a revenue source for the organization. Public events such as charity for orphans, youth meetings, education for motorcycle taxi drivers, mini-marathon races and pole climbing races, are also held for villagers to help accept the presence of the Workshop and HIV/AIDS. As the Workshop activities developed, YPI received support from the Ford Foundation which enabled them to spread the model to different villages including in Papua Province.
Following the campaign activities, in 1993, Samsuridjal and his organization YPI developed a community-based mother-to-child transmission prevention program in Jakarta, involving PKK (neighborhood women’s group) cadre, posyandu (integrated healthcare service), hospital, and puskesmas (health clinics). It has expanded the reach of Samsurijal’s ideas beyond the medical world and provides channels to a broad public audience with local leadership to put them into action. YPI has also been a conduit to hear the ideas of the communities the partner organizations represent.
AIDS assistance volunteer training was held and became a routine volunteer activity for the workshop. Under the Workshop program Samsuridjal has just started a preschool activity as an integration process between children of HIV+ parents and other children. He also works with a partner citizen organization in Papua, an area considered the center of the HIV/AIDS epidemic in the country. Unlike the national top down, “Save Papua” program, Samsuridjal develops a program that meets local needs—and responds to how they are locally perceived—including reducing mortality rates related to HIV, HIV prevention from mother-to-child, and HIV prevention among youth, including school-age youth.
In an effort to make the ARV locally available, Samsuridjal imported the therapy from India where it was less expensive, though they still faced difficulties with customs officials. After two years of efforts, he engaged a pharmaceutical company from India to sell the license for the ARV to be produced in Indonesia at a reduced cost. He lobbied the state-owned Kimia Farma pharmaceutical company and successfully proved the need for ARV local production. He also made a further effort by mobilizing campaigns as public pressure to the government to provide cost subsidies. In 2003, the government, with support from WHO, made the ARV free for PLWA.
Despite the improved medical infrastructure, the challenge in the spread continues Testing for HIV is growing as much as the increase in Hepatitis B and C. Samsuridjal sees the opportunities to be able to reach out to more people where a hepatitis virus test could be used as a gateway to testing patients for HIV. However the challenge would be similar to an HIV test, to include advocacy for affordable testing kits and hepatitis treatment. He is working on campaigns with Indonesia’s 1,000 clinics, community organizations, testing kit manufacturers, government, and donors to generate cheaper testing, as well as drugs. With advocacy, Samsuridjal hopes to facilitate access to HIV testing to near one million people in Indonesia In addition to working with the testing campaign, Samsuridjal’s next work would also be in mother to child prevention measures through HIV test for mothers and babies. He will also develop the SOP for hospital and health clinics.
As HIV spreads to younger generation and in rural areas, Samsuridjal thinks it is important to educate children in primary school. Besides spreading his model to Asia Pacific countries, he is also building counseling skills among medical students in handling AIDS patients and family by developing curriculum around communication skills. He will also facilitate health providers so that they can properly encourage people to undergo testing and counseling. He learned during his career that more medical students now come from middle-class families and are accustomed to an urban lifestyle. Samsuridjal sees the development of empathy as a high priority for the profession. He is developing a volunteer program that would allow his students to spend some time in rural or poor areas early in their careers.
Samsuridjal’s breakthrough in the field of HIV/AIDS has to a certain extent given birth to new innovations developed by the newer generation of social entrepreneurs. For example, his Workshop spurred Ashoka Fellow Suzana Murni to work with PLWA struggling to maintain their physical health and social well-being. Working from the same organization, Ashoka Fellow Daniel Marguari further empowers those infected and those affected—family members, spouses, and children to form groups to reach out and support others.
Samsuridjal was born in Bukit Tinggi, in a remote area in West Sumatra in 1945 but spent most of his time in Jakarta. He learned the importance of empathy from his mother. His father, a teacher, taught him honesty, respect for others, modesty, and the importance of hard work. These values have guided his life. When he was 5-years-old, his mother was in an accident. Since there was no doctor in the village, his mother became infected and needed to be on full bed rest for some time at home. He cared for his mother by taking her urine and feces to the toilet fifty meters away in the backyard every day. His mother was moved by how genuine her child’s care was and she prayed for him to become a doctor. Coming from a modest family, the possibility to study in medical school seemed impossible. However, his father encouraged him that he could if he worked hard.
This led him to study at the University of Indonesia in Jakarta and graduate in 1969. Samsuridjal studied hard and got a scholarship of which some of that money he sent home. He also took the opportunity to gain income as a lecture assistant. He studied further and graduated as an internist in 1976. During his study he was uncomfortable just working in the hospital, he preferred going out to reach people in need with his friends. With the motivation to serve people in remote areas, Samsuridjal moved with his family to Kalimantan and lived there for five years (1976 to 1981) to set up and develop a public hospital. There he helped to resolve clean water problems using filtration systems as people were using river water containing high zinc particles. He has spoken about how much he learned that post in terms of the value of listening to patients, to understand what they knew about their health problems. In 1976 he got training in infectious diseases, wrote about diseases, and contacted his colleagues in Thailand to learn from them. Upon his return from Kalimantan he took a PhD study in Immunology and finished in 1986.
In 1984, Samsuridjal received a diploma in Tropical Medicine and Hygiene at Mahidol University, Bangkok. He learned that the spread of HIV/AIDS cases were increasing in Indonesia. In 1985, Samsuridjal and his colleague Zubairi Djoerban initiated the AIDS task force, a joint force between the lecturers of the UI School of Medicine and the public hospital. He also started a voluntary campaign about AIDS prevention at surrounding schools every weekend in 1986. In 1989, Samsuridjal, Zubairi Djoerban and his wife Sri Wahyuningsih established Yayasan Pelita Ilmu to introduce preventive measures for HIV/AIDS and support for patients and families. For his dedication in fighting against HIV/AIDs, Samsuridjal received an award from the National Commission Against Drug Abuse, 2005.