This article is based on a presentation given at a recent conference of the Association of Nurses in AIDS Care (ANAC), held in Washington, DC in the USA, during November 2021. It outlines some of the community-led innovations in response to the COVID-19 pandemic and highlights how crucial these were to maintain the health and wellbeing of people living with or affected by HIV. Their role as a necessary complement to health services in many countries suggests further exploration of stronger links between healthcare workers and the community would be beneficial to improve the quality of life of people affected by HIV, and in preparation for future pandemics.
COVID-19 and HIV services
The disruption to HIV services globally during the COVID-19 pandemic has been recorded in multiple articles and reports, for example, Shiau et al (2020). During 2020 and early 2021, people living with or affected by HIV in many countries faced personal difficulties, increased mental health problems and, in many cases, a lack of access to humanitarian and other support due to existing discrimination and structural barriers. These included often marginalised populations such as men who have sex with men (MSM), sex workers, people who use drugs, and trans people. Gaps in health and social services and support required rapid responses from civil society organisations and communities, in a large part because existing systems were overwhelmed with COVID-19-related demands (Pinto and Park, 2020).
Community-based and civil society organisations were vital in maintaining continuity of care and support, using lessons learned from the HIV context (Hargreaves and Davey, 2020), and it is vital to document and learn from these responses to acknowledge their substantial contribution to protecting the health and wellbeing of people living with or affected by HIV. Without innovations at the community level, it is likely that the impact of COVID-19 would have been much worse.
This article aims to summarise a study undertaken during 2020 and 2021 by Frontline AIDS, an international non-governmental organisation (NGO) working with partners across the world, which tracked community-led innovations in response to COVID-19 for HIV-affected populations. The research was part of a larger study conducted by Oxfam, exploring community responses across the humanitarian and development sectors to COVID-19, called Emergent Agency in a Time of Covid.
The aims of the study were to document the pandemic's impact on people affected by HIV, and track community-led innovations to reduce harm and maximise treatment continuity and HIV prevention in a context of shifting health system priorities and general social upheaval. One of the key findings highlighted the role of communities in maintaining health delivery and health outcomes for people living with HIV and raises important questions as we enter a new era where HIV and COVID-19 co-exist. What are the implications for community organisations, and how can links with the health sector be maximised to ensure continuity of support and care?
Data collection
During 2020 and 2021, Frontline AIDS collected a range of data focusing on HIV-facing communities and organisations, including surveys and a series of semi-structured interviews with respondents working with HIV key populations in Africa, Asia, Europe and Latin America. Data sources included project monitoring and reports, and a ‘COVID-19 response log’ that tracked community responses from partner organisations over a 12-month period.
Twenty-nine case studies were also selected for inclusion in the study, and 15 interviews undertaken with respondents representing different HIV key populations in several regions. Data were analysed qualitatively using Quirkos to code responses and group data into core themes. Interview participants were provided with information about the study and provided signed consent forms to proceed with the interview.
Results
COVID-19 forced innovation
‘COVID-19 encouraged us to create, adapt, and be innovative.’
Respondent, Senegal
Findings provided important insights into multiple innovations by civil society organisations (CSOs) and communities in response to COVID-19 that complemented health and social care systems. As one respondent from Rock of Hope, an organisation supporting the LGBTI community, based in Eswatini said:
‘We are trying to see how we survive this storm and [maintain] activities at the community level so people are not affected. At the same time, we need to amplify key population issues to remain relevant in the COVID-19 period and not get swallowed up.’
Respondent, Eswatini
Innovations were often a response to new challenging situations, as shared by a respondent based in Senegal, working with RNP+, an organisation supporting people living with HIV:
‘The communities with which we have worked have had difficulties getting around—PLHIV [people living with HIV] and key populations. There has been a big impact of COVID-19 on transport and activities. Sex workers couldn't work anymore [so] they had no income. MSM [men who have sex with men] couldn't move about, and because of COVID-19 there was a heightened feeling of homophobia in Senegal.’
Respondent, Senegal
Sharing the message
These emerging problems required solutions, especially around factors impacting on the health of those caught up in COVID-19's disruption. One key factor was around information sharing. It was a priority to ensure communities received up-to-date information about COVID-19, and available health services. Social media was used extensively in Burundi to provide awareness of COVID-19 ‘and how to protect oneself’. In South Africa, a large civil society organisation, Networking HIV and AIDS Community of Southern Africa (NACOSA), used Instagram influencers to share information about COVID-19 and health service access in South Africa.
In Eswatini, Rock of Hope launched a web-based education portal to share information with nurses working in ‘hot spot’ areas. This included virtual sensitisation training on supporting HIV key populations to ensure healthcare workers were acclimatised to the issues. According to Rock of Hope:
‘We [also] used social media to access nurses to direct them to training. A lot of our engagements were done on social media. Before that we had an online programme, so this online programme acted as a response to the COVID-19 pandemic.’
Respondent, Eswatini
Finding alternative ways to share information in resource-poor areas was also crucial, for example loudspeakers attached to trees in village centres in Uganda. There was expanded use of eHealth and telemedicine to promote mental health, HIV prevention, and treatment continuity in multiple countries. The increased use of digital space has had clear benefits, allowing organisations to share information rapidly and to reach people unable to leave their homes. In addition, people have been more vocal online, according to many organisations.
Maintaining treatment access
Another key priority was treatment continuity of antiretroviral (ARV) medication for people living with HIV. One approach was to co-ordinate health and government systems to enable continuation in India. Other organisations, such as Alliance India, found alternative methods of transporting treatment to people's homes or providing transport to transfer young people living with HIV from home to health facilities, as was the case for one Ugandan organisation, Alliance Medical Services (AMS). Increasing access to home delivery of HIV treatments in India and Uganda (including longer prescription periods), and opioid substitution treatment in Ukraine were vital to maintain health. In Senegal, to ensure treatment continuity, one organisation of people living with HIV, RNP+, drew on community workers (mediators):
‘We have community mediators—people living with HIV and affiliated with our network—who are the support system for people living with HIV. We emphasised to them the importance [of] maintaining ARVs and providing transport to the treatment distribution centres. At that time, people needing ARVs weren't going because of transport problems or fears of COVID-19. Now the mediators make sure they do.’
Respondent, Senegal
Differentiated service delivery (Grimsrud and Wilkinson, 2021) was another important part of the response. For example, in Kenya, where the government responded quickly to COVID-19 early in 2020 by declaring a nationwide curfew and movement restrictions, the impact on marginalised populations was immediate. Brothels, bars, and other hotspots were closed. Many people lost their jobs or sources of income, and some moved temporarily to rural areas. Young people were forced to live with their parents and caregivers.
‘As soon as restrictions were announced, [we] spoke with people to understand their concerns. Some people had no income and couldn't afford to travel. Others were unsure how to access health facilities in rural areas. We sought rapid solutions to provide support, nutrition, treatment continuity, and access to HIV prevention methods.’
Respondent, Kenya
In Uganda, for the organisation AMS:
‘Because of COVID-19, there's a paradigm shift in care services, using other models such as differentiated services. People are used to doing self-care [and] self-testing. We are going to continue with some of these things. It will help decongest the clinics. We will continue with mobile services through the phone [as] it helps us reach more people. We are now [delivering] differentiated services according to their needs.’
Respondent, Uganda
Strengthening health outcomes
Making sure that healthcare workers were suitably prepared for caring for HIV key populations affected by COVID-19 was addressed by an organisation in Kenya, where specialist training was provided in the care and support of transgender people and MSM. This preparedness included creating networks of community organisations to share new information about COVID-19 and ways to reduce the impact. At Transgender and Intersex in Action (TIA), based in Burundi:
‘We established a coalition [to] discuss how we could improve our work together as organisations and [the] way forward. We worked together—and we tried to reach some solutions to overcome [the] challenges.’
Respondent, Burundi
For marginalised populations affected by HIV, who often fall outside of official support networks, community organisations ensured there were general health reminders. For young people living with HIV in Uganda, this includes reminders on the importance of adhering to COVID-19 infection control measures and taking exercise, and making sure they attend health facilities if possible. There was also provision for personal protective equipment (PPE) and its dispersal among HIV key populations in South Africa.
Resource mobilisation was essential for maintaining health outcomes. In India:
‘There was a lot of local resource mobilisation. This was part of existing programmes, but during lockdown all our implementing partners were able to go beyond, tapping all the existing stakeholders such as the police, hospitals, and other service providers. [There was] a massive response!’
Respondent, India
This is closely connected with the need to provide comprehensive care and support. In Uganda, peer educators made home deliveries of HIV-prevention equipment such as condoms, lubricants, risk-reduction information, sexually transmitted infection (STI) self-testing kits, pre-exposure prophylaxis (PrEP) and post-exposure prophylaxis (PEP). Masks and hand sanitisers were also distributed, alongside nutritional support. Virtual counselling was provided to protect the mental health of people at home, and there was training on the prevention of gender-based violence for vulnerable women. Mobile units for testing, and transport support for attendance at health centres were additional innovations to ensure treatment continuation and HIV/STI prevention.
New insights into humanitarian support
One additional component characterising many community innovations was the need to provide humanitarian support. For many HIV-facing organisations, this was relatively novel but proved a vital part of the overall maintenance of health, especially for groups already marginalised. For example, in Burundi:
‘Bringing nutritional assistance to our members helps transgender people stay [safely] at home. [This also means] our members better understand how to protect themselves from COVID-19.’
Respondent, Burundi
An NGO in Cote d'Ivoire ‘reached out to offer care, ARVs, and food parcels’ distributed widely and by community members themselves. In Uganda, one large organisation, Uganda Youth Coalition on Adolescent Sexual Reproductive Health Rights and HIV (CYSRA), saw that ‘there was hunger’ and young people ‘were trying to survive. It was all hard.’ CYSRA sought funding to buy food and supplements, sanitary pads for girls, and soap, sanitisers, and face masks.
Proximity to the community was a primary enabler for meeting emerging humanitarian (and health) needs that characterised all COVID-19 responses. For MENA Rosa, an organisation based in the Middle East:
‘We have always been in touch with the [community] focal points—if not daily, then weekly. They give a lot of feedback on the ground [about] the new needs and gaps in service provision.’
Respondent, Lebanon and regional
Implications
According to a report prepared for the World Health Organization (WHO):
‘Community organisations have developed innovative approaches for self-tests/counselling/linkage to care. Where possible, community organisations have set up online support. Community organisations have also supported PLHIV who are stranded in countries where they do not normally reside to get their treatment.’
Our findings also confirm that community organisations played a vital role in maintaining the health and wellbeing of people affected by HIV, providing a vital complement to existing health systems. This demonstrates that the community sector must be seen as an equal partner in the provision of care and support for people affected by HIV, and marginalised populations, during times of crisis and periods of relative stability.
What is important is that civil society and community organisations are acutely aware of the challenges and disruptions to the health and wellbeing facing people affected by HIV during the COVID-19 pandemic. They are close to communities of people affected by HIV and, for many, they have a long history of advocating for the rights of people affected by HIV and other marginalised communities (Beyrer, 2021). Strong communication networks are already in place, and during 2020-2021 these have been used extensively.
COVID-19 forced rapid innovation. New problems emerged requiring fast and effective solutions. One final factor to consider is a new level of emergent agency in HIV communities and organisations—they had to respond and innovate because other existing support structures were jeopardised. This is community power in action, but comes at a cost, especially around sustainability. How sustainable the responses are will depend on several factors, and one of the priorities will be to promote community system strengthening through suitable financing. If this is successful, then the role of community organisations in complementing health system delivery will continue to improve the quality of life of people living with or affected by HIV even beyond the confines of COVID-19.
Conclusion
Community responses during COVID-19 demonstrated that, especially when health systems are under strain in times of crisis, community-based innovations, and interventions—running in parallel to health services—are essential. Supporting civil society organisations during times of crisis is crucial to enable their ability and capacity to continue programmes, adapt and innovate as new challenges emerge, and fill gaps left by weakened health and social services. Healthcare workers should explore ways to work closely with the community, for community-based organisations know best the people they support.
Community responses to COVID-19 illustrated that experiences gained from the HIV sector can be adapted and applied in different emergencies, including pandemics. To ensure suitable preparedness for the next pandemic, and strengthen the effectiveness of current interventions, a partnership approach between communities, civil society organisations and health services is essential. It is only together that the needs and safety of people living with HIV can be properly and comprehensively addressed, especially during times of crisis. As one Kenyan respondent, who works for an organisation supporting transgender people, said:
‘We are basically implementers of the community's wishes. Everything we do comes from the community.’