The section below provides in-country reflections from AfNHi steering committee members on doing HIV prevention research advocacy, as well as looking ahead as AfNHi into what might be needed to champion civil society advocacy in the future.
While there is some level of consultation at community level, very little is happening. Several times communities are viewed as ‘helpless people, not that literate, assumed to be unable to provide the level of information that is required. Consequently when we claim to be engaging communities, we may only be focused around a few high level community members with influence. This is not the right approach, because some of these things are much more felt than thought about in the brain. In my view we still have so much more to do in engaging real people.
Alice has been actively involved in health advocacy in Uganda and throughout the East Africa region. Reflecting on biomedical HIV prevention research advocacy, civil society engagement with scientists is organized around information dissemination and community mobilisation. When research partners present on evidence regarding the effectiveness or lack of effectiveness around a particular drug, they collaborate on what the advocacy messages should be around that specific drug and take this information further into the communities. These engagements with scientists remain limited to a few organisations.
While there is advocacy taking place in Uganda, the political environment is not always very conducive and there is a shrinking space for NGOs especially around advocacy. Intimidation of civil society has resulted in waning participation. Many are in the background, with a few civil society organisations making noise at the frontline. Successful advocacy efforts are linked to civil society organisations standing together in support of one another. Regional collaborations and networks boost in-country mobilisation and information dissemination. Reflecting on the research around HIV, Alice expressed the need for more scholarships in Africa for African researchers to support African-led advocacy strategies.
The civil society advocates that are able to participate in biomedical HIV prevention research discussions in Malawi are limited to a few. While there are many different research studies underway, engagement around these are not well integrated into other HIV prevention information platforms.
Maureen’s involvement in HIV prevention research advocacy began when she worked to increase awareness around microbicides among civil society and government stakeholders in Malawi. In this space her interest continued to grow and she joined the Vaccine Advocacy Resources Group (VARG), linking her to advocates across the region. In-country Maureen was a member of a national PrEP Task Team that brought together civil society, development partners and government representatives to undertake an appraisal for national PrEP roll-out and access.
The task team successfully facilitated civil society inputs to influence national policy language to be more inclusive and forward looking toward access of PrEP.
Dedicated platforms for civil society to organize in its own way and advocate for more radical policy and programmes are not resourced within the country, limiting coordination and mobilisation across sectors. Maureen is interested in capacity building with civil society to build research literacy, increase country consultation platforms and locally developed materials that take into account local contexts and ways of knowing.
The Nigerian country advocacy context is different from countries in Eastern and Southern Africa that have biomedical HIV prevention research studies underway. In this context advocacy is organized around awareness-raising on HIV prevention research and empowering communities to understand through working with HIV prevention NGOs and grassroots movements. A key focus is on demand creation to prepare communities for the future, and proactively address community perceptions around HIV prevention research tools.
Discussions on HIV prevention research developments are held as complimentary to other health related matters. Recently, NHVMAS’ have been advocating for the registration of PrEP for HIV prevention, without which doctors are unable write prescriptions. Government departments are also targeted to be pro-active and engage with developments in the biomedical HIV prevention research arena. Morenike has set her sights on the AU level, with AFNI building commitment and impacting policy across the continent.
I want to see a completely expanded network that will look at key issues in health that looks at health broader, bringing in malaria and TB and other key health issues that are of interest in Africa and apply learnings from disease area to other relevant disease areas.
While civil society presence in the biomedical HIV prevention research to roll out engagements may be limited, youth representation and participation is routinely side-lined across all areas of health. Young people are called upon for community mobilisation and social media campaigns, there are many other ways that young people can and want to do advocacy.
In Ghana where there are no prevention research studies underway, the advocacy focus has been working around communities’ responses to new prevention technologies. For the Youth Front this involved building capacity on how to work with mainstream civil society to build community support for new HIV prevention tools.
I see AfNHi developing into a bigger body of activism and advocacy that engages with a lot of power in-country. One that is involved in political spaces, and decisions that are made in these spaces for the advancement of HIV prevention research programming with consideration of the drivers of HIV.
There could be a range of prevention tools by 2020, civil society can’t wait to fight to be recognised in these spaces, we need to mobilise and find creative ways to get people’s perspectives. APHA wants to see more advocates engaged in the development of policies and guidelines, moving from a ‘’nice-to-have’’ to a ‘’have-to-have’’ relationship between research teams and civil society. Participation by invitation is not meaningful, civil society need to have a seat at the table in the formulation of local and regional agendas.
Across the continent AFNI are working with organisations that have varied interests and as a result –mandates, with an interest in biomedical HIV prevention research and rollout developments. Increasing civil society participation requires capacity building to understand the science and research processes. The HIV prevention research to rollout and access agenda has to be incorporated into the prevention agenda that civil society already lead.
One win would be convening policy meetings and forums with African leadership, together with civil society for conversations and exchange of views, as a platform for advocacy. I see AfNHi playing a big role in the policy arena, uniting the African voice around what the Africa research agenda is, and in a very strong way pushing forward key priority issues. – Whether it is capacity for research, financing – whatever priorities that are surfaced, that AfNHi will be a strong voice in HIV prevention research.
In building the HIV prevention research advocacy movement, Rosemary asserted the need to identify more advocates who have a mutual interest in HIV prevention research and get them to organize where they are not yet. Regional participation will definitely take different forms in different countries depending on the capacity and interest in research; the extent to which civil society is strong and vibrant and, the presence of demonstration projects. AfNHi seek to identify more opportunities for fostering learning across countries and mobilisation for joint civil society advocacy.