Suzana Murni is breaking Indonesia's silence about HIV by helping those infected with the virus to live healthy, productive lives and by changing how the media, the government, and the public treat HIV-positive persons.
The New Idea
Suzana is the first person in Indonesia to systematically provide support and information to those living with HIV. While there are organizations that focus on preventing the spread of HIV and AIDS, Suzana works with people who are infected, though not yet sick, and who are struggling to maintain their physical health and social well-being. Suzana helps people with the virus to survive without expensive drugs by teaching them how to strengthen their immune system and prevent common illnesses, such as diarrhea. Because HIV-positive persons face overwhelming discrimination, she improves their psychological well-being and emotional strength through support groups, information, and self-esteem building workshops. Many HIV-positive persons lose their jobs because of misinformation about how HIV is contracted. Furthermore, many who are HIV-positive quit their jobs in despair, thinking they will soon die. Suzana rebuilds self-confidence and promotes independence by providing grants to start small businesses. Moreover, Suzana is changing attitudes about HIV-infected people. Combating stereotypes with facts, she provides information to those who have contracted the disease, their partners and families, medical professionals, citizen organizations, government officials, the media, and the general public. As part of this effort, she has successfully encouraged those who are HIV-positive to speak out in order to give the disease a human face.
Since the first cases of HIV and AIDS were reported, Indonesians have been reluctant to talk about the disease, believing that it arises from immoral behavior and is a problem only of sex workers, drug addicts, and foreigners. Aware of this stigma, and knowing that test results may not be kept secret, many people are afraid to be tested. This fear of testing, combined with the lack of testing facilities, has led Indonesia to an unrealistically low estimate of its HIV and Aids cases. From 1987 until May 2000, the official number of people infected with HIV in Indonesia was 1,285. The World Health Organization estimates that for every reported case, two hundred more exist and that the total number falls somewhere between two hundred thousand and two million cases. The number of cases is believed to have increased 25 percent in the first four months of the year 2000.There are many organizations in Indonesia that work on HIV prevention, but there are no organizations that help those living with HIV. Misled by the low number of reported infections, donor agencies have funded prevention programs to the exclusion of other areas of need. The result is a serious lack of information about living with HIV, as well as a dearth of clinics, hospitals, doctors, and nurses prepared to take on HIV cases. Stereotypes and misinformation about who gets HIV and how it is spread have had serious consequences: there are few testing facilities in all of Indonesia; those suffering from AIDS are turned away from medical facilities; people are tested without their consent; and confidentiality is broken for those who test positive. Drugs that help people live with the disease are prohibitively expensive for almost all Indonesians, as much as two million rupiah per month, about ten times the minimum monthly wage.
Suzana established The Spiritia Foundation and made its mission to improve quality of life for HIV-positive Indonesians and to advocate for equal treatment. It is the first organization in Indonesia made up of people living with HIV who focus on support, care, and empowerment. In their Jakarta office, Suzana and her colleagues set up the Positive Learning Center, which includes a library, space for meetings and support groups, and space for individual counseling services. Suzana made access to information an essential service. She created a monthly newsletter, Senandika, which is distributed to individuals, citizen organizations, and government agencies for health and social services. Senandika publishes health facts relevant to living with HIV, information on alternative treatments, and tips for strengthening the immune system. Suzana also publishes a series of small booklets, "Living with HIV/AIDS," "Alternative Therapies," and a "Patient's Rights Handbook." Distributed free of charge, these popular publications are in high demand. "The Patient's Rights Handbook" is the only handbook in Indonesia that promotes awareness about rights and ethics related to living with HIV and AIDS. Information is also made available through a monthly Discussion Forum in which guest speakers from the medical profession and government take part in discussions with the audience about how to live more healthfully and keep the immune system strong despite infection. Suzana builds emotional and psychological strength through support groups. At first, she led the sessions; now she trains others to start and facilitate their own groups. She holds skill-building and self-esteem-building workshops three times a year in different locations throughout Indonesia. These workshops teach public speaking and group facilitation, peer counseling, writing, and working with the media. Suzana also teaches people with HIV to speak in public forums in ways that break down isolation and shame and fight.Suzana helps those who are HIV-positive through the Positive Fund, which lends money to anyone living with HIV who needs emergency medical aid, or who submits a proposal for a small business venture. For instance, a husband and wife in South Sulawesi, both of whom lost their jobs when they tested HIV-positive, got a start-up loan from the Fund to open a print shop. Suzana then convinced members of her network to use the shop for printing stickers and posters. Realizing that the media shapes public opinion, Spiritia Foundation regularly monitors the newspapers, TV, and radio. Staff clip articles that deal with HIV/AIDS and respond when they wish to correct or congratulate the author's views. They send a letter and an information package to provide clarifying information. In this way they have built good relations with the media. Suzana has worked closely with The Institute for Research, Education, and Publication, an organization in Yogyakarta that provides training in "empathetic journalism" and that gives people living with HIV the opportunity to write for its publications. To influence national policy, since 1988 Suzana has occupied a seat on the National AIDS Commission, making her the only civil society representative to sit with the Commission's ministry officials. By providing officials with information about healthy people living with HIV, she has been able to form strong alliances and now works with representatives of the health and social services department. Suzana is involved in the Asia Pacific Network of People Living with HIV/AIDS, and in 1997 she served as coordinator of this regional organization. She was also director of the National Forum of NGOs concerned with HIV/AIDS in Indonesia. This network has helped her spread the idea of healthy living to many other organizations throughout Indonesia and to gain support from the work of other groups.
Suzana comes from a family of architects. She returned to Indonesia after studying in the United States and obtained a job teaching English at a respected secondary school in Jakarta. She enjoyed the challenge of teaching and found outlets for her interests in writing and the arts. Using her skills in design, she set up a business for designing and embroidering the beautiful blouses traditionally worn by women in many parts of Indonesia.In 1995, at the age of 23, Suzana learned that she was HIV-positive. She had just buried her boyfriend, whom she had nursed for months until he died of AIDS. All her hopes and dreams were crushed because she believed she would soon die. Her family's love and support helped her get beyond depression and disappointment, and Suzana began to focus her talents on changing the way that HIV-positive people in Indonesia feel about themselves and how society sees them.