Rumah Tulisan

by Anton Muhajir
Published at Asia Report

For Agus, fictitious name, the end of life was not the end of a journey. As a former injection drug user (IDU), he faced a new problem when he passed away. Two days ago, the IDU died from complications arising from AIDS. Often in Bali, a person who dies is the responsibility of not only their families, but also of the traditional local community, called banjar.

Normally, this care consists of bathing, burying, cremation, and a traditional farewell ceremony. But not for Agus.  Agus’s body was rejected not only by his family, but by his community, as well.

Fortunately, Agus still had many friends: fellow users and former IDU and people living with HIV and AIDS (PLWHA).  So, these friends brought Agus’s body back to Sanglah Hospital, the biggest hospital in the Province of Bali, Indonesia, where it was treated.  About a week before, the same story happened with Budi (not real name), another of the PLWHA in Bali. Because of his HIV/AIDS status, Budi’s body was also rejected by the residents.

The examples of Agus and Budi are common among PLWHA in Bali and Indonesia, who face the common threat of discrimination. These stories also show how the the gap between policy on paper can vastly differ from the facts in the field.

Nowdays, out of the 33 provinces in Indonesia, Bali is one of the five provinces with the highestnumber of cases of HIV and AIDS in Indonesia. Based on data from the Ministry of Health (MOH), the number of cases in Indonesia until December was 16,110. Bali’s case total alone was 1,177.

The data presented by the MOH is far different from the data presented by the Bali Provincial Health Office. According to the Bali Provincial Health Office, by October 2008 data cases in the province reached 2,323 cases.

A more extreme example is shown in the Adult At-Risk Population Estimate in 2006. That report estimated that some of the people most at risk of infection, sex workers and spouses of PLWHA, numbered from 4 million to 8 million. However, the largest at-risk group remains IDU. According to the results of a 2006 estimate, the number of PLWHA in Indonesia is between 169,000 and 217,000, where 46 percent of them are IDU, while 14 percent are sex workers.

The increase in these numbers reflects the details of the pattern of transmission. From the original circles, such as IDU and sex workers, the disease began to spread to the general population. This pattern can readily be seen in Bali and Papua.

The overarching AIDS policy in Indonesia has been designed to address this epidemic in many ways. However, in practice, the country still faces the classic problems of stigma, discrimination, and lack of funds.

According to the National Action Plan 2007-2010, the AIDS program in Indonesia was to be conducted with attention to the following three things: First, the program is directed primarily to reach a sub-population of IDU and sex workers. Second, the prevention of transmission through syringes and the prevention of the sexual transmission rate of new HIV infections were to be priorities. Third, the scope of the program is only focused on 19 provinces, although one estimate states that 80% of the whole of Indonesia is affected.

To support the three large programs in which Indonesia already has policies, the government has taken the following steps: 1) Presidential Decree Number 36 Year 1994, establishing the National AIDS Comission (NAC) and Regional AIDS Comission to coordinate the implementation of AIDS policy; 2) a public commitment to adopt the 2001 resolution of the United Nations resolution General Assembly of the Special Session on HIV and AIDS (UNGASS), as a framework in the expanded response to AIDS; 3) the signing of the Sentani Commitment in 2004, by the six provinces with the highest levels of HIV prevalence as a symbol of the movement in the fight against AIDS, and 4) the signing of a Memorandum of Understanding (MoU) between the National Drugs Board and the National AIDS Comission about harm reduction.

In March 2006, the Government of Bali (Perda) published Regional Regulation 3/2006 with regard to   HIV and AIDS. This regulation was intended to operate alongside other public and non-public programs, including campaigns for prevention, voluntary counseling testing (VCT), and other mechanisms of care, support, and treatment. Article 20 paragraph (1) in the Regional Regulation states that all people have certain obligations with respect to the HIV/AIDS, one of them being the prohibition of discrimination against PLWHA.

However, in practice, there is still discrimination against PLWHA. For example Adi, one of the PLWHA in Bali, mentioned how his friends were refused examination by a doctor only because of his status as PLWHA.

Many of these other laws and rules have also been rapidly defeated, as reflected in the number of AIDS cases in Indonesia. Especially during the last five years, the number of AIDS cases has risen even more quickly. The Department of Health reported the number of new AIDS cases in the year 2006 as 2873. This amount is double the amount that was reported during each of the first 17 years of the epidemic in Indonesia, which was approximately 1371 cases.

Recently there was a controversial plan by the Papua Legislative Branch to put microchips on the bodies of  PLWHA. Many sectors and organizations, particularly the Non-Government Organization (NGO) community, opposed the plan because they considered it to be inhumane and discriminatory. However, that plan directly indicates that a high number of legislative members still have a poor understanding about HIV and AIDS and how to treat the PLWHA.

The disconnect between theory and practice exists with respect to discrimination, but also with respect to HIV/AIDS prevention and harm reduction resources. There are several programs that have not been fully implemented by the local government of Bali, although they have been created by laws and statutes.  For example, needle exchange programs (NEP) in prisons still have not been implemented, even though the Regulation permis the creations of these programs.

Again, the rules on paper are not synergistic with the political decisions made, and not made, while implementing these rules.   This is nowhere more evident than in the inadequate government funding for these very programs and policies.  The estimated amount of funds needed for four years (2007-2010) is about Rp 7.58 trillion (about US$ 631million) for prevention, care, support and treatment, management, and mitigation. However, the estimated availability of funds per year is only Rp 597 billion (about US$ 49 million).  Government contribution was only about 20 percent of the total funds, while 80 percent came from donors.  Thus, Indonesia remains very dependent on donors. In other words, ironically, Indonesia is still reliant on the benevolence of colonialistic funding from which it has attempted to move away for so long.