For the estimated 38 million people living with HIV, COVID-19 has meant one pandemic overlaid on another. The interaction between the two pandemics, and how the HIV community has responded, provide important lessons for the future.
Sex workers, people who use drugs, adolescent girls and young women, LGBT+ people and people living with HIV have seen restrictions on access to HIV prevention and treatment and other health services, as well as increased stigma. There is evidence of threats to human rights, where infection control legislation has been employed as a repressive tool against marginalised communities. For many people affected by HIV, social isolation and depression has contributed towards poorer mental health and physical health outcomes.
But has COVID-19 also brought something positive to communities’ capacity to choose and to affect change? Have the responses triggered by COVID-19 created new networks, organisations, politics, or options?
As part of Oxfam’s Emergent Agency research project, Frontline AIDS has collected data from 40 global partners in Africa, Asia, Latin America, and Eastern Europe through surveys and in-depth interviews. We found that marginalised communities and civil society organisations (CSOs) that support them have indeed been under a lot of strain responding to COVID-19, often in difficult circumstances. But we also found resilience, innovation and adaptation that will benefit the responses to HIV and other health issues in the years to come.
There are three areas where the HIV community response has been especially significant, shining a light on innovation and the emergence of community power.
1. Increased digitalisation
We found increased use of digital spaces almost universally across the HIV sector. CSOs have provided online counselling, shared COVID-19 information and dispelled misinformation via WhatsApp and used Instagram influencers to share public health information. This digitalisation of the HIV response has had clear benefits, allowing CSOs to share information rapidly and to reach people unable to leave their homes.
However, there are limitations to the benefits of digitalisation. The ‘digital divide’ is a reminder that not all people have access to computers, smartphones, or the internet. There are also important issues around privacy and confidentiality, data ownership, and security of personal information. This is of special concern for communities who are criminalised, such as people who use drugs, sex workers, and men who have sex with men.
2. The strength of communities
COVID-19 forced communities and CSOs to reshape their interventions to meet the rapidly emerging new needs of people affected by HIV. Many CSOs were pushed into novel areas such as humanitarian aid and handing out personal protective equipment, where local government-led provision was inadequate.
Our evidence suggests that pre-existing engagement between people living with HIV and CSOs, and between the HIV community and governments, could be powerful enablers for rapid and targeted interventions in response to COVID-19. Previous relationships with government enabled a stronger response in some countries. In addition, the long history of community experience advocating for the needs of people affected by HIV was a powerful enabler.
A fundamental role of many CSOs during COVID-19 was to provide current and accurate information. In many countries affected by COVID-19, public health information and rules around movement changed rapidly and often. In Senegal, networks of people living with HIV strived to ensure that CSO partners were kept up to date: “There were activities we started before the government. […] From the appearance of COVID-19 we sent communication to all our partners to watch out for COVID. Don’t wait! They need to inform everyone.”
Providing humanitarian aid was, for many CSOs working on HIV, relatively new. As the socioeconomic status of many communities deteriorated during 2020, it quickly became clear that to maintain effective HIV prevention and support services, it was essential to ensure people had enough to eat. For a Ugandan organisation working with young people, “there was hunger, and young people were trying to survive. It was all hard.” Providing food parcels, soap, and sanitisers became for many CSOs as routine as ensuring access to HIV treatment and prevention services.
We’ve also seen remarkable examples of innovative responses from communities and CSOs. Some responses have reshaped existing services, whilst others have created completely new ways of working.
One partner taught sex workers to use technologies and helped them pay for mobile data so they can access the internet on their mobile phones. An organisation in Uganda had community members collect medications for each other. In Kenya, a CSO provided legal and paralegal training for community workers to help trans people who faced increased harassment during COVID-19. Another conducted awareness raising for the police and religious leaders, “to ensure people didn’t invite violence but [instead] embraced their families.”
Community-led responses are fit for purpose beyond HIV
Community-led responses have over the past four decades proven effective for addressing HIV. COVID-19 has shown us that these same community-led responses are adaptable and transferrable to other pandemics. The adaptation and innovation from the HIV community’s response to COVID-19 explored in this study, along with the findings from the rest of the Emergent Agency project, provide important evidence for more effective and inclusive pandemic preparedness in the future.
Future planning will require close attention to the sustainability of the HIV community response and making sure we capitalise on the innovations that have emerged in response to COVID-19. In the rush to curb the impact of COVID-19, we must not lose sight of the long-term factors that are slowing down progress towards the 2030 goal of ending AIDS, such as systematic inequalities, criminalisation of marginalised communities, and health systems that remain fragmented and remote. We must ensure that community health responses are adequately funded as a vital component of what makes health systems work – for existing as well as future pandemics.
For more information, please look out for the three research papers based on data collected for the Emergent Agency research project that will be published soon at: www.frontlineaids.org