The Government of Indonesia is committed to ending HIV-AIDS by 2030 to meet the Sustainable Development Goals, the National Medium Term Development Plan, and the 95-95-95 targets. The 95-95-95 target set globally targets at least 95% of people living with HIV (PLHIV) knowing their status, 95% accessing treatment, and 95% of PLHIV who are undergoing treatment having their virus suppressed. To respond to these problems, several new strategies have been proposed. For example, the implementation of HIV self-screening, peer support mobilization, partner notifications, strengthening ARV consumption adherence counseling, etc. However, to obtain optimal results, the above strategies need to be supported by the active involvement of the community to provide feedback so that any new initiatives or improvements can be right on target.
Community involvement was first introduced through the Greater Involvement of People Living with HIV (GIPA) principle, which encourages PLHIV to be treated equally and involved in program design and implementation, especially for HIV-AIDS programs. The GIPA principle also suggests community monitoring of program implementation, or what is known as Community-led Monitoring (CLM). In the CLM concept, monitoring is initiated and led by the community to ensure that the programs implemented by the government are in line with their needs.
CLM for the HIV program was first implemented in Indonesia through the monitoring of ARV stocks. Now, CLM has been developed and implemented by various organizations, namely the Indonesia AIDS Coalition (IAC), the Indonesia Positive Network (JIP), and the Joint CLM National Network, which involves 6 national networks and is guided by PPH Atmajaya. Since December 2022, these organizations have agreed to collaborate in a group called the CLM-INA Task Force so that the CLM initiatives carried out by each organization can synergize well, support the promotional efforts of all parties involved, and be able to develop joint advocacy strategies.
The results of community-based monitoring carried out through various CLM initiatives yielded numerous findings. The findings, in the form of data that has been analyzed, are then conveyed by the community to policymakers. Its purpose is to obtain a response and encourage co-creation in solving various existing problems by the relevant stakeholders.
One method of conveying CLM findings and recommendations is through hearings with relevant stakeholders, and on Thursday, July 13, 2023, the CLM National Policy Dialogue was held under the concept of ‘#BerbenahBersama: Building Multi-stakeholder Collaboration to Encourage Co-Creation in the National HIV Program.’ This activity was carried out through panel discussions, which began with a presentation of CLM findings & recommendations and continued with responses & statements from relevant stakeholders.
This activity began with opening speeches by Dr.dr. Brian Sriprahastuti, MPH, Deputy II Senior Advisor at the Executive Office of the President, and Krittayawan Boonto, UNAIDS Indonesia Country Director. Both stated that good cooperation between civil society and the government is one of the reasons for the success of HIV programs in several countries. They also reiterated that CLM is an effort to ensure that programs targeted at the community are implemented optimally with feedback from the community itself. This does not mean that the community becomes an auditor or assessor. CLM is a form of cooperation in which the community, as the beneficiary, provides feedback for program improvement and encourages cooperation in solving problems.
Panel 1, which carried the theme of ‘Bridging the Need and Availability in HIV Prevention and Testing through Cross-Sector Collaboration,’ featured 3 panelists, namely dr. Pratono (Ministry of Health HIV Working Team); Haryanto, Spd.MM (Commercial Manager of PT Mitra Rajawali Banjaran); and Husein Habsyi (Vice Director of the Pelita Ilmu Foundation), guided by dr. Asti Widihastuti, MHC (UNFPA). In accordance with the theme, Panel 1 discussed access to HIV testing, PrEP, and related services (pap smear, STI, TB, condoms & lubricants, family planning, and PMTCT) both for key populations and the public, which is still low in numbers. Some of the causes identified were the view that such services are unnecessary, which was related to a lack of knowledge. Also, access-related problems and fear of going to health facilities. More specifically, youth’s access was significantly lower than that of adults. These issues provided the background for discussions in Panel 1.
Summarizing the panelists’ statements, it is understood that information regarding PrEP is still not widespread. In addition, the number of health facilities providing PrEP services is still very limited. Dissemination of information regarding PrEP, or more broadly, HIV, was an important note from this panel. In addition, collaboration between the government, communities, and the private sector also needs to be strengthened. With continuous dissemination efforts and additional locations for service, it is hoped that community knowledge will increase, stigma associated with HIV testing and access to related services will decrease, and program outcomes will increase. Another important point to note is the need to increase knowledge of CLM at the health facility level. CLM is not an audit but a monitoring effort to provide feedback. The point that needs to be conveyed is that the government and the community are in an equal position, with both helping and supporting each other for program improvement.
From the community side, the Pelita Ilmu Foundation (YPI) carries out capacity-building activities for field officers to ensure program outcomes and improve implementation quality. Coaching is mainly given with regards to new approaches such as the use of Oral Fluid Tests and PrEP. In line with the Ministry of Health, YPI is also trying to strengthen its communication strategy. Primarily for public education materials regarding access to services, new approaches, and cross-cutting issues by utilizing social media. Meanwhile, the private sector, represented by PT Mitra Rajawali Banjaran, highlighted access to condoms, which is still hampered by negative stigma. Going forward, access to condoms must be normalized so that condoms can be easily and cheaply accessed in various places and their benefits are felt both for family planning and the prevention of STIs and HIV-AIDS.
Panel 2 carried the theme of ‘Encouraging Equal Access to Treatment, Care, and Support by Transforming Client-Oriented HIV Services,’ featured 3 panelists, namely dr. Nida Rohmawati, MPH (Ministry of Health Director General of Public Health); dr. Endang Lukitosari (Head of the Ministry of Health’s HIV-AIDS & STIs Working Team); and Lutfiyah Hanim (TWN/KOM Researcher), guided by Adi Nugroho (UNAIDS). In accordance with the theme, Panel 2 discussed HIV treatment & care with particular focus on ARV stockouts, Nevirapine phasing out, and access to related services (ARV adherence counseling and MMD).
Responding to the problems, panelists from the Ministry of Health stated that the drug procurement process, including ARVs, was carried out through a single door mechanism and allocations were given according to the stated needs. The Ministry of Health has not received reports of ARV stockouts from districts in 2022, which is interesting when compared with data from the community. Regarding this matter, the Ministry of Health stated several possibilities, one of which is that ARVs are available but have not reached end users. This requires concentrated efforts to ensure that ARVs can reach PLHIV, and preventive measures can be taken to prevent stockouts.
Meanwhile, regarding MMD, the panelists stated that the program was already up and running, but they still had to pay attention to the readiness of health services and PLHIV themselves. Finally, regarding the ARV regimen transition, the panelists emphasized that the government is working on a transition to the TLD regimen until December 2023, and this process requires close monitoring and guidance. Ideally, this new regimen would be accessible to all PLHIV, including women and adolescents. Furthermore, efforts are being made to integrate related services (e.g., Nutrition and MCH) and the involvement of the private sector and other government agencies such as the Ministry of Religious Affairs and the National Population and Family Planning Board.
From the community side, the panelist from the Coalition for Affordable Medicines (KOM) stated that access to affordable medicines is very important for patient groups, including PLHIV. On the other hand, access to drugs is sometimes hindered by patents, which make drugs expensive. Thus, there is the challenge of ensuring access to affordable medicines on the one hand and encouraging innovation on the other. One effort that needs to be made is to increase medical literacy for patient groups as well as awareness regarding the importance of access to affordable drugs for health workers and government agencies. In the question-and-answer session, participants highlighted the obstacles regarding access to viral load tests and TLD regimens. One participant also asked questions regarding the delivery process for women with HIV.
The last panel, namely Panel 3, carried the theme of ‘Responding to Mental Health Issues and Synergy in Handling Violence Cases in HIV Response,’ featured 3 panelists, namely dr. Yunita Ari Handayani, MKM (Ministry of Health Directorate of Mental Health); Merry Madina (Ministry of Women Empowerment and Child Protection Deputy Assistant for the Protection of Women’s Rights in Vulnerable Households); and dr. Mona Sugianto, M. Psi (AD-Familia) guided by Yuni Asri (UN Women). In accordance with the theme, Panel 3 discussed various forms of violence experienced by PLHIV. Also, the impact of HIV status and violence on mental health.
The panelist stated that mental health services can now be accessed at primary health services centers. The approach used is one that is in line with the human life cycle, with an emphasis on preventive measures and promotion. The Ministry of Health has carried out violence screening at the Community Health Center (Puskesmas) level and through the Vulnerable Group Working Team. It must be stated that women often experience acts of violence. Data from a survey conducted by the Ministry of Women Empowerment and Child Protection in 2021, for example, found that 1 in 5 women aged 15–64 years have experienced cases of violence during their lifetime. This number increases for women with HIV, who have multiple layers of vulnerability. In response to these problems, the Ministry created a hotline, SAPA 129 reporting channel, and SIMFONI-PPA information system that can be accessed by the public.
Complementing the statements of two previous panelists, a representative from AD-Familia stated that PLHIV are very vulnerable to mental health problems. This is due to the stigma and discrimination against PLHIV, which even targets children. There are cases when children with HIV are ostracized, bullied, or even expelled from school. Apart from the external environment, there is also an inner struggle regarding the acceptance of one’s HIV status. Therefore, it is necessary to make not only preventive efforts but also curative ones.
The activity proceeded smoothly with the active involvement of participants, both online and offline, who came from various organizational backgrounds. At the end of the event, with regards to the results of the panel discussion, several points were noted for follow-up, namely:
- Ensure that there is a feedback mechanism as a forum for the community to be able to provide input on program implementation;
- Increase multi-stakeholder collaboration to respond to supply-demand needs for prevention & test kits, including health promotion & HIV prevention (PrEP, condoms, etc.);
- Conduct periodic updates regarding ARV availability, ARV delivery, and viral load testing;
- Follow up on the plan for the preparation of technical guidelines/SOPs, especially for the treatment of adolescents;
- Multi-stakeholder collaboration to ensure the integration of mental health services for PLHIV that are regulated in relevant regulations, including ensuring mental health screening for PLHIV;
- Ensure that violence services are sensitive to HIV issues and that HIV services carry out regular violence screening; as well as
- Prepare technical guidelines regarding health cadres with regard to the latest Criminal Code.
Multi-stakeholder collaboration will be the main point of this follow-up plan, in which the CLM-INA Task Force will continue to lead and encourage collaborative efforts from the government, the private sector, and the community itself.
