Community responses to HIV during the Covid-19 pandemic

Outreach workers have been forced to dramatically shift their ways of working in response to the pandemic. Photo by Novrian Arbi for Antara.

 

Since the beginning of the Covid-19 pandemic in Indonesia, the speed and sophistication of responses at the community level have matched the government’s official response – and sometimes even outpaced it.

 

Yet, examining Covid-19 responses in a simple binary of informal versus formal does not adequately capture experiences on the ground. This becomes clear when observing the impact of Covid-19 on existing essential healthcare programs.

 

Since July, we have tracked the impact of the pandemic on HIV outreach workers in an organisation for men who have sex with men (MSM) in Jakarta. Outreach workers deliver HIV programs through a range of roles, including the provision of safe sex information and accompanying newly diagnosed patients. Usually part of the community, they offer a friendly voice on the end of the phone, or advice on the complexity of starting on treatment. This is particularly important among MSM, gay and transgender communities, which already face significant stigma and discrimination.

 

Although the full impacts remain to be seen, community-based organisations have gathered enough data to know the effect of the pandemic on HIV programs in Indonesia has been severe.

 

For example, preliminary data collected on programs for female sex workers (funded by the Global Fund and channelled through Ministry of Health, the United Nations Population Fund (UNFPA) and the Jakarta office of the Indonesian Planned Parenthood Association (PKBI)), has shown that the number of sex workers contacted by outreach workers reduced by 50% in the first half of 2020 in a number of Indonesian cities. This was due to a range of reasons, encompassing fear of exposure to Covid-19 at testing sites, to migration away from economic centres due a lack of sex work clients.

 

Several cities and districts in Indonesia have also reported shortages of life-saving antiretroviral drugs to treat HIV, resulting in them restricting the number of days of medication provided in a single visit.

 

Outreach workers for MSM in Jakarta have been versatile in shifting their work to respond to the pandemic. The shifts required of these outreach workers were far-reaching, from working from home, to restricting how and in what ways they meet clients. Some of their responses were ad-hoc community-based innovations, while others were top-down responses to requests from donors and clinics.

 

Overall, the impact on outreach workers was complex and diverse, ranging from the psychological to the technical. Take Doni, an experienced 42-year-old outreach worker. He described severe anxiety and stress at the onset of the pandemic. He explained, “I tried to follow the government restrictions, and shifted our reporting to online forms. But I felt depressed for those entire three months.”

 

This was in part because a shift in the format of work conducted by outreach workers resulted in more profound transformations. Previously, Doni worked closely with healthcare workers, spending long but pleasurable days inside the clinic. At the height of the pandemic, social distancing requirements meant he had to wait outside. He felt excluded and confined from the social life of the clinic — which offers a sense of belonging ­­— but also separated out as less “essential” than the medical staff inside.

 

Outreach workers previously interacted with the community in person at hotspots. They were forced to pivot their activities online. This built on existing yet underdeveloped online outreach efforts, to provide safe sex and HIV information online.

 

Nevertheless, outreach workers described several challenges. A key component of outreach work is the development of trust, which is difficult to replicate online. As a result, outreach workers described ceding some of their privacy to build rapport. The closure of meeting spaces meant that clients sometimes suggested meeting at home.

 

In some instances, outreach workers designed innovative programs to accomplish their objectives in the midst of a pandemic. For example, a new program enabled clinics to send medication to clients via courier, thereby improving access, especially for those who had relocated to other cities or islands. An HIV self-testing pilot study in Jakarta, where outreach workers send testing kits to clients, fortuitously launched in July, allowing clients to avoid both crowded public transportation and delays at clinics because of the pandemic.

 

Although donors and organisations provided support for outreach workers to do their job safely online, in-person work was still required. This brought contact with a wide range of people, and thus increased the risk of contracting Covid-19.

 

Hand sanitiser and masks were made available early on in the pandemic. However, it was difficult to adequately adhere to social distancing measures. Outreach worker Doni eventually contracted Covid-19, a diagnosis which has had serious consequences long after he recovered.

 

“After I recovered, I could prove that I was well, but I was labelled [as a person with Covid-19] by society and by my own community,” he said. “To try to restore my good name, I tried to show I was already negative, already back to normal … but people would say, don’t come close to me, don’t meet with me anymore.”

 

As a result of his illness, Doni faced fierce discrimination from his neighbours, and decided to move apartments, a considerable financial burden. The emergence of stigma towards people who have contracted Covid-19, and its intersection with prevailing forms of stigma towards HIV positive people, requires further understanding.

 

The response to HIV – an epidemic with a 30-year history in Indonesia – encompasses a range of professions and organisations. They range from volunteers and civil society activists, to community-based outreach workers funded by international development programs, to doctors and nurses.

 

Out of the spotlight of more spectacular, large-scale responses to HIV (such as self-screening kits and courier services) the work provided by outreach workers is a critical chain linking often-stigmatised groups to healthcare services.

 

Without support for outreach workers to continue to do their essential job safely, with dignity and respect, Indonesia will struggle to meet its target of 90-90-90 (where 90% of people with HIV know their status, 90% of people with HIV are on treatment and 90% of people on treatment have viral suppression).

 

Longstanding community responses to HIV demonstrate that culturally relevant forms of knowledge are as essential as tests and treatment. In the context of the Covid-19 pandemic, these community workers remain an important but underutilised component of Indonesia’s healthcare infrastructure.

 

This research, and support for Sandeep Nanwani’s visit to the University of Melbourne, was funded by an Indonesian Democracy Hallmark Research Initiative (IDeHaRI) grant. Ignatius (Gambit) Praptoraharjo was a Faculty of Arts Indonesia Initiative visiting scholar in 2020.

 

Amalia Puri Handayani holds master's degrees in social policy for development from Erasmus University (the Netherlands) and in women's studies from the University of Indonesia. She has been involved in research projects on violence against women and sexual and reproductive health with recent applications in abortion care.

Benjamin Hegarty is a McKenzie Postdoctoral Fellow at the University of Melbourne, prior to which he was visiting scholar at the University of California Irvine. His research on the history of ‘transgender’ in Indonesia has received several awards and appears in Journal of the History of Sexuality, Transgender Studies Quarterly and Medicine Anthropology Theory. His collaborative research with Indonesian colleagues on the intersection of masculinity, sexuality and the provision of HIV care in Jakarta is ongoing.

Dr Ignatius Praptoraharjo (Gambit) is a research consultant at the Center for Health Policy and Management at Gadjah Mada University. He completed his doctorate 2010 at the University of Illinois at Chicago. He was a Faculty of Arts Indonesia Initiative visiting scholar in 2020.

Sandeep Nanwani is an activist, anthropologist and physician who works at the United Nations Population Fund in Jakarta, most recently on a project that supported the development of clinics designed for young peoples’ sexual/reproductive health needs. He is chief medical officer and a long term volunteer for Yayasan Kebaya, a shelter for disadvantaged transgender women in the city of Yogyakarta. He holds a Masters of Medical Science in Global Health Delivery from Harvard University.