Lessons from the Unitaid/CHAI/AfroCAB-supported HIV Treatment Optimization and Advanced HIV Disease programmes
At PLAN Health Advocacy and Development Foundation (PLAN Foundation), we believe that communities should not be treated simply as recipients of health information or services. Their experiences, knowledge and perspectives are essential to understanding what works, identifying barriers and improving the health programmes that affect their lives.
This principle was put into practice through PLAN Foundation’s participation in the Community Advisory Board (CAB) model supporting HIV treatment optimisation and Advanced HIV Disease (AHD) programming in Nigeria, in partnership with the AfroCAB Treatment Access Partnership, the Clinton Health Access Initiative (CHAI) and Unitaid.
The experience demonstrated how an organised and informed community voice can contribute to the introduction, adoption and scale-up of HIV treatment innovations while strengthening communication between communities, health facilities, programme implementers and policymakers.
From HIV innovation to community engagement
The CAB approach emerged from efforts to improve access to optimal HIV diagnostics, treatment and technologies.
The IAS conference publication Dynamic partnership to redefine community engagement in HIV programming in Nigeria documents how Unitaid and CHAI partnered with AfroCAB to develop activities centred on improving patient literacy and supporting uptake of optimal HIV products through an Optimal Community Advisory Board (Optimal CAB).
At the inception of the Unitaid-funded Optimal project, PLAN Foundation worked with the partners to implement community engagement activities across 56 health facilities in 12 Nigerian states. The CAB had three principal functions:
- facilitating adoption of optimal HIV products;
- improving patient literacy and generating informed demand; and
- obtaining patient feedback to inform policy.
CHAI provided technical information and evidence on the products, while CAB members coordinated by PLAN Foundation helped take that information into communities.
This created an important two-way relationship between technical knowledge and community experience.
From consultation to participation
The CAB model went beyond conventional community sensitisation.
The Treatment Optimization project commenced in 2017 with operational research and the rollout of tenofovir/lamivudine/dolutegravir (TLD). It initially worked with three facilities in three states—Lagos University Teaching Hospital (LUTH), Federal Medical Centre (FMC), Makurdi, and Jos University Teaching Hospital (JUTH)—before expanding to 68 facilities across 12 states.
The 12-state community engagement programme covered Sokoto, Niger, Plateau, Nasarawa, Benue and the FCT in the North, and Akwa Ibom, Rivers, Cross River, Oyo, Ogun and Lagos in the South.
PLAN Foundation’s engagement therefore extended across diverse geographical and health-system contexts, in the South-West, South-South, South-East, North-Central and North-West geopolitical zones where the organisation draws on its community engagement experience in its SRHR, MNCH, HIV treatment and prevention work.
The project engaged people living with HIV support groups, Mentor Mothers and Adherence Counsellors within target treatment facilities.
Building community capacity
A central feature of the approach was strengthening the capacity of community actors to understand HIV treatment innovations and communicate effectively with their peers.
The project supported engagement around optimal antiretroviral products, paediatric dolutegravir (pDTG) and Advanced HIV Disease products and services.
The IAS publication (programme.ias2023.org/Abstract/Abstract/?abstractid=3843& ) reports that Optimal CAB members trained 56 adherence counsellors on Advanced HIV Disease and 148 Mentor Mothers on paediatric dolutegravir. The CAB also produced and disseminated information that helped address myths concerning DTG and supported more equitable access, particularly among women.
For AHD specifically, community engagement was implemented in 28 facilities across Lagos, Anambra, Rivers and Akwa Ibom, involving four State CABs and 56 Adherence Counsellors. The objectives included building the capacity of communities and people living with HIV leadership to support demand for AHD products and services and generating demand for those products and services.
The experience demonstrated that community actors can play a meaningful role in helping people understand new and sometimes complex health technologies.
Creating a community-to-health-system feedback loop
One of the most important features of the CAB model was its emphasis on feedback.
The community was not simply the endpoint of information dissemination.
CAB members helped bring community experiences and concerns back into discussions with health programmes and other stakeholders. The IAS publication identifies obtaining patient feedback to inform policy as one of the three core functions of the Optimal CAB.
The closeout experience similarly reported that CABs contributed to elevating the community voice in national and subnational policy discussions.
This created an important feedback loop:
Technical evidence → community understanding → community experience → feedback → programme and policy dialogue
For PLAN Foundation, this experience reinforced the importance of creating structured channels through which communities can influence the health programmes intended to serve them.
Supporting the adoption of HIV treatment innovations
The CAB model was applied to several HIV products and services.
The IAS publication reports that the Optimal CAB supported the adoption and uptake of nine HIV products, including:
- Tenofovir-Lamivudine-Dolutegravir (TLD);
- Lopinavir/ritonavir pellets;
- Paediatric dolutegravir (pDTG);
- Darunavir/ritonavir;
- Liposomal Amphotericin B;
- Flucytosine;
- VISITECT;
- CrAg Lateral Flow Assay; and
- TB-LAM.
The publication further reports that Optimal CAB advocacy contributed to the recommendation of dolutegravir as the preferred first-line antiretroviral regimen in Nigeria.
The project therefore demonstrated that community engagement could contribute not only to awareness, but also to the broader process of introducing, adopting and scaling up health technologies.
Reaching communities with appropriate information
The project also invested in the development and dissemination of information, education and communication materials.
The IAS publication reports that the Optimal CAB produced and disseminated 14 print and five audiovisual IEC materials on HIV services, reaching 20 states—54% of Nigeria’s states (https://tinyurl.com/45wk4eam).
The closeout experience also documented the use of community and facility-level communication approaches, including engagement with support groups, Mentor Mothers and Adherence Counsellors.
These approaches helped translate technical information into forms that could be understood and used by communities.
Community engagement during Advanced HIV Disease programming
The CAB approach was also applied to Advanced HIV Disease.
In the AHD component, community engagement sought to build the capacity of communities and people living with HIV leadership to support demand for AHD products and services. The intervention covered 28 facilities in four states, comprising Lagos, Anambra, Rivers and Akwa Ibom States.
This experience was particularly important because AHD programming involves complex clinical products, diagnostic tools and care pathways. Community engagement therefore had to address not only awareness but also understanding, demand and appropriate use of services.
Responding to challenges identified by communities
The experience also showed that community engagement can help identify practical barriers to health-service access.
Among the challenges documented during implementation were user or consultation fees that could prevent access to antiretroviral medicines and insecurity that negatively affected treatment access. The project also experienced disruptions when some Mentor Mothers and Adherence Counsellors were laid off or transferred, requiring the programme to retrain replacement personnel. These experiences reinforced an important lesson: community engagement must remain responsive to the realities affecting people’s ability to access and use health services.
What did the CAB experience achieve?
The project closeout concluded that CABs had made a significant and meaningful contribution to access to both antiretroviral medicines and Advanced HIV Disease commodities.
It documented strengthened community and support-group leadership around optimal HIV treatment and AHD, as well as the role of CABs in the adoption and scale-up of DTG-based regimens, including paediatric DTG. The CABs also helped elevate community voices in national and subnational policy discussions.
The IAS publication provides further evidence of the programme’s achievements, including support for the uptake of nine HIV products, development of IEC materials, training of community-facing health actors, myth-busting around DTG and support for HIV-service tracking.
These results demonstrate the potential of a structured community advisory mechanism to contribute to health-system change.
Lessons for community-led health innovation
Several important lessons emerged from PLAN Foundation’s experience with the CAB model.
1. Communities need more than information
Providing information is important, but meaningful engagement also requires mechanisms through which communities can ask questions, express concerns and provide feedback.
2. Community representatives can contribute to health-system improvement
When adequately informed and connected to health facilities and programmes, community representatives can help identify barriers and support more responsive implementation.
3. Health literacy can influence demand
Understanding a new health product or service is an important foundation for informed demand and uptake.
4. Community feedback can inform policy and implementation
The Optimal CAB model deliberately incorporated patient feedback as an input to policy, while the project demonstrated the contribution of community voices to national and subnational policy discussions.
5. Community engagement should be integrated into health programmes
The IAS publication concluded that community engagement should be integrated into HIV interventions and that engagement should focus on patient literacy to achieve better treatment outcomes.
From experience to institutional practice
The Nigeria CAB experience has become an important part of PLAN Foundation’s institutional learning about community participation, health literacy, accountability and advocacy.
It demonstrated the value of having a structured mechanism through which communities can interact with health facilities and programmes, understand emerging health technologies, provide feedback and contribute to wider policy conversations.
This experience informs PLAN Foundation’s continuing commitment to structured community participation and the need for a Policy and Framework for Community Advisory Boards.
The significance of this institutional learning extends beyond HIV treatment.
The underlying principle is applicable whenever a new health technology, intervention or service is introduced:
Communities should not simply be informed about health innovations. They should have meaningful opportunities to understand them, question them, provide feedback on their implementation and contribute to decisions that affect their access and experience.
Looking Forward
The HIV Treatment Optimization and Advanced HIV Disease experience provided PLAN Foundation with practical lessons about how community structures can support the introduction and scale-up of health innovations.
These lessons will continue to remain relevant as Nigeria continues to explore new approaches to HIV prevention and treatment.
PLAN Foundation’s continuing work builds on the principle that community participation is not an accessory to health programming—it is an essential component of responsive, equitable and sustainable health systems.
The organisation will continue to draw on its experience in community engagement, evidence generation, advocacy and accountability to help ensure that health innovations reach the people who need them and that community experience remains part of the evidence informing implementation and policy.
The Evidence Behind the Story
IAS Conference Publication
Dynamic partnership to redefine community engagement in HIV programming in Nigeria
The publication documents the development and implementation of the Optimal Community Advisory Board model and its contribution to HIV product adoption, patient literacy, demand generation and policy feedback in Nigeria.
Nigeria CAB Closeout Presentation
The Nigeria CAB Storyboard — Stakeholders’ Dissemination Meetings, July–August 2022 The presentation documents the implementation experience, geographic reach, community engagement approaches, lessons learned and contributions of the CAB model to HIV treatment optimisation and Advanced HIV Disease programming
PLAN Foundation is a member of the International Association of Providers of AIDS Care (IAPAC), the World Patients Alliance (WPA), the International AIDS Society (IAS), the Global Network of People Living with HIV (GNP+), the Stop TB Partnership, the International Alliance of Patients’ Organizations (IAPO), the International Union Against Tuberculosis and Lung Diseases (IUATLD), the Global Health Council (GHC), as well as various other relevant regional and global networks, movements, and professional associations aligned with its vision of a Nigeria where the individual, family, and community are adequately empowered to protect themselves against poverty, underdevelopment, and the spread of diseases.
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