"Communities were the first responders to HIV three decades ago, and they remain essential in advocating for a robust response to the epidemic, delivering services that can reach everyone in need and tackling HIV-related stigma and discrimination."
This report from the Joint United Nations Programme on HIV/AIDS (UNAIDS) and Stop AIDS Alliance draws on multiple sources to document the many ways in which communities are advancing the response to AIDS and to explore evidence for the effectiveness of these responses. Four core areas of community-based responses to HIV include: (i) advocacy, campaigning, and participation in accountability; (ii) community-based service delivery; (iii) participatory community-based research; and (iv) financing through the Global Fund to Fight AIDS, Tuberculosis and Malaria (Global Fund) and other funders. Each of these areas is illustrated in the report by examples of community-based actions from various countries and contexts around the world.
Despite what the report characterises as "substantial achievement" over 30 years of response to HIV - with communities at the forefront of action - challenges remain. For example, gender inequalities faced by young women in sub-Saharan Africa - and stigma and discrimination faced by people living with HIV in other key populations globally - can lead to denial of access to, or deterrence of people from seeking, vital services. In addition, legal and sociopolitical environments such as punitive laws or abusive law enforcement can obstruct effective access to and delivery of services. Because "communities give a voice to those who need services, provide feedback as to whether policies and programmes are working and suggest how they can be improved", they are key participants in responses that: generate positive health and development outcomes and strengthen health systems; safeguard the rights of those they reach and serve; mobilise communities, including marginalised, socially excluded, and criminalised population groups; improve the quality, equity, and scale of national responses through their participation in accountability and coordination mechanisms; mobilise communities and service providers, building on a sense of shared responsibility and solidarity around issues of health and social justice; bring programmes to scale when there are sufficient investments both in the programmes themselves and the capacity to build and sustain them; and pioneer innovative approaches that build ownership and leadership in communities.
The bulk of the report describes each of the 4 components of community responses to HIV outlined above; detailed examples of current or recent community responses follow each description.
- Example (see page 21) of advocacy, campaigning, and participation in accountability: Spearheaded by the Global Network of People Living with HIV (GNP+) and World AIDS Campaign International, the Leadership through Accountability programme developed an evidence-informed, community participatory advocacy model from 2009 to 2013 in 10 countries. The national networks of people living with HIV implemented 5 evidence-gathering methodologies: the People Living with HIV Stigma Index, Human Rights Count!, riminalisation Scan, GIPA Report Card, and Advancing the Sexual and Reproductive Health and Human Rights of People Living with HIV. The evidence generated was used to inform national-level priorities and the delivery of HIV programmes with a focus on key issues that were based on the real experiences of people living with HIV. Moreover, the evidence was used to assist governments to deliver coordinated and effective responses to HIV and AIDS. It was funded by the Department for International Development (DFID).
- Example (see page 49) of community-based service delivery: Gestos in Brazil conducted a programme (2000–2010) for children living with or affected by HIV who were underserved in Brazil. Gestos provided individual and group psychosocial support for children and their parents, conducted educational activities promoting citizenship, and took the children on cultural outings such as visiting bookstores, theatres, museums, cinemas and parks. Support also included visits to the children's homes (on request) and regular meetings with parents. Educators at Gestos helped children improve their performance at school and educated them about their rights as Brazilian citizens. Gestos workshops for teachers trained them in dealing with children living with HIV and informed educators about HIV in general.
- Example (see page 61) of community-based research: The Global Network of Sex Worker Projects (NSWP) and its partner regional and national sex work networks conduct research to document good practice in community-led interventions by and for sex workers. This research has informed the development of normative guidelines by the World Health Organization (WHO) and others, and it has supported the scale-up of sex worker-led advocacy, service delivery, and community-based financing. For instance, in 2013, research was carried out in each of the 5 NSWP regions; 4 sex worker-led HIV programmes were selected in each region to present examples of best practice for sex worker organisations (e.g., the necessity of engaging with sex industry gatekeepers, government, law enforcement, health professionals, and the media to demand justice and forge alliances.
- Example (see page 67) of community-based financing: In Ukraine, Light of Hope has been the intermediary that provides government funding from the state and local budgets to non-governmental organisations (NGOs). Founded by people living with HIV in 1999, the organisation also builds NGO capacity in advocacy through training and workshops. In 2013, Light of Hope trained more than 20 representatives, developed manuals that describe the mechanisms for implementing advocacy practices, and built a network of regional experts in advocacy. Through the efforts of the organisation, more than 9 buildings were secured with favourable lease terms for NGOs that now provide HIV-related services at a lower unit cost. Advocacy by Light of Hope has also ensured that some of the NGOs' staff salaries and HIV medication used in HIV services are paid for by the state budget.
The report concludes with recommendations for future directions in community-based HIV responses. For instance:
- Scaling up community-based services requires support from governments, in supplying resources, providing an enabling policy environment, and ensuring systemic linkages.
- Communities need to balance advocacy with service delivery more effectively.
- Funding must be made available not only for service delivery but also increasingly for advocacy and research.
- Look deeper at the structural and systemic inequalities by developing approaches that combat stigma and discrimination, understanding which approaches are most successful and can be scaled up, advocating for the best possible responses, and holding people to account.
- Conduct more research to understand the impact of responses that are peer-led or community-based.
- Invest in and support non-medical community interventions that address deep-rooted structural barriers through a multisectoral approach that includes health, social care, justice, education, labour, and all other sectors of society.
- Shift community responses from emergency to long-term responses and integrate them in health systems requires supporting community-based service providers to make the transition.
- Recognise that community systems strengthening (CSS) is an approach that requires domestic and external partners to engage in systematic strengthening of community systems to ensure a comprehensive response: they must keep in mind an effective balance between state facilities and community systems.
- Include the principle of Greater Involvement of People living with HIV and AIDS (GIPA) as a starting point for strengthening the participation of people living with HIV and key populations in measuring progress towards achieving Universal Health Care.
The report concludes (footnote numbers removed): "Community engagement, guidance and responses are the backbone of any AIDS response. As such, the Strategic Investment Framework and the UNAIDS Fast-Track approach identified community mobilization as a 'critical enabler' -an essential component of responses that have an impact on HIV. A systematic review found that community mobilization can have impact when there is a strong collective identity combined with efforts to address the wider sociopolitical context. It is this mobilization from the grass roots to national, regional and international levels that has underscored why investment in community mobilization is fundamental to scaling up effective responses to AIDS."
UNAIDS website, January 26 2016. Image caption/credit: A Community Mobilization Worker in Kenya, courtesy of Nell Freeman