Spiritia Foundation

Reaching out to PLHIV in Indonesia

In the 1990’s in Indonesia there was limited information about care, support and treatment for people infected with HIV. People infected with HIV were groping for information. They lived in silence and, secrecy because of shame, discrimination and social ostracism associated with HIV.

But today, the situation has changed dramatically. In Indonesia today there is care, support, treatment and, above all, a strong network of people who help themselves and others like them. This has been possible because of groups likeSpiritia Foundation.

Now an umbrella organization for PLHIV- with support groups in Indonesia, Spiritia Foundation – from the word spirit to denote hope - was started in 1995 by fashion designer-activist Suzana Murni when she herself needed support after her partner died of AIDS and she was diagnosed HIV positive. Encouraged by her family, she first formed a support group, Spiritia Together. The members of the group provided mutual support and shared information. In 1997, realizing that the needs of PLHIV were wider, a NGO Yayasan Spiritia (the Spiritia Foundation) was formed with the main aim of improving the quality of life of PLHIV and encouraging the creation of a supportive and non-discriminative environment for PLHIV throughout Indonesia. Spiritia thus became the first national peer support group for people living with and affected by HIV in Indonesia.

This was the start of the Spiritia Foundation, which is now active in every province of Indonesia. It trains Peer counselors to help people living with HIV deal with the myths and confusion surrounding the infection. It believes that to address the problems of PLHIV, it is necessary to talk, not just among the PLHIV, but also to, and with, the government, lawmakers and non-governmental agencies.

Spiritia aims to provide a safe and confidential environment for PLHIV to meet and share experiences and information about living with HIV/AIDS. Its main objectives include empowering PLHIV; improving their access to care and support by starting and maintaining cooperation with allied individuals and institutions; and promoting an objective and non-discriminative attitude towards PLHIV among decision-makers and the general community.

To bring about a supportive environment for the PLHIV, Spiritia adopted an inclusive approach, of working with partners outside the support group. Spiritia cuts across gender, race, religion/beliefs, socio-economic level, educational background and sexual orientation.

To date, Spiritia has helped create 16 provincial umbrella groups, 12 district umbrella groups, 165 peer support groups in 22 provinces across Indonesia. Its goal is to establish at least one support group in each of the country's 33 provinces - and to promote partnerships between the group members and the country’s Health Ministry, national AIDS Commission, NGO sector and others.

The guiding principle of Spiritia is the involvement of PLHIV, after all  they know their needs best. This principle, popularly known as GIPA (greater involvement of people living with HIV/AIDS), advocated that PLHIV should be viewed at all levels of policy and decision-making as subjects rather than objects in all responses to HIV/AIDS. Suzana passed away on July 6, 2002, but her vision lives on in the activities and efforts of the organization she created.

When asked what motivated her to set up one of the most expansive organizations of PLHIV in Indonesia, Suzana said in an interview she gave before her death in 2002: "In 1995, when my partner died because of AIDS and I was diagnosed with HIV, I and my family knew nothing about the infection. There was no treatment for it. I was very lonely and isolated. I stopped working and was waiting to die. But even after six months, when I was normal and healthy, I realized that there are many things about HIV that I did not know. That is when I started searching for information and get in touch with other HIV-positive people. We felt if we worked together, we could break the feeling of isolation. This became the first peer support group for HIV-positive people in Indonesia. In the absence of treatment, spirit is what you need to go on, so we named it Spiritia."

Spiritia provides assistance to local and regional HIV/AIDS institutions in Indonesia. It organizes national meetings of PLHIV; promotes awareness of the epidemic among the general population; supports the creation of new initiatives; and establishes networks for access to treatment and care. Through its network of peer support groups, Spiritia provides training for peer treatment educators; ensures that the marginalized groups are informed of their rights; sets up funds to provide emergency support for PLHIV; and encourages income generation through micro-credit initiatives. Its many programmes are carried out by staff members, many of whom are PLHIV.

Spiritia was one of five global NGOs to receive a special award from Family Health International at the Barcelona AIDS Conference in 2006, and one of the 25 NGOs to get the UNDP Red Ribbon Award.

Among the most popular programmes of Spiritia is the local strengthening visit programme that it started in 2001, under which Spiritia teams - consisting of four-six people each - visit towns (40 in 21 provinces), spending three-four days at each place. This programme provides a human face to the epidemic; helps in sharing knowledge and experience; promotes GIPA; and strengthens advocacy. Teams meet with local HIV/AIDS commissions, officials, legislators, doctors and PLHIV. They visit hospitals and NGOs, and vulnerable groups such as sex workers, drug users and transvestites. They also give talk shows on radio and television. The benefits of this programme include improved self-esteem and empowerment of PLHIV; formation of local peer support groups; increased awareness among NGOs working in prevention; enhanced activity by AIDS commissions; and increased budgets for therapy and other AIDS activities by legislature.

Another popular programme is the bi-monthly discussion forum to discuss issues of treatment due to limited access to anti-retroviral drugs and lack of government health support systems for PLHIV. The forums facilitate dialogues and information exchange. The seminars, where PLHIV, physicians, activists, pharmaceutical companies, journalists, alternative therapists, and government representatives participate, help to forge new collaborations and identify innovative actions. This has resulted in a wider referral system for care and support.

Spiritia finally launched its web site in July 2006. This is designed for ease of use and fast access resulting from a minimum of graphics, bearing in mind that many in Indonesia can only access the internet through slow and expensive dial-up services. All Spiritia documents are now accessible through this site, together with a wide variety of other information of interest both the PLHIV and to those supporting them. In addition, an English language section provides information on the state of the epidemic and the local response for people overseas. This site is continually updated.

True to Suzana’s fundamental principle, Spiritia takes the position that no one can afford to say "we are good people and they are bad". All have to work together. Seven years after the death of Suzana, Indonesia is now starting to wake up, thanks to the untiring effort of groups like Spiritia Foundation.