While the world celebrates the recently announced achievement of 15.8 million people on antiretroviral therapy, this progress has not been evenly felt. In April 2015, the International Treatment Preparedness Coalition – West Africa (ITPC-WA) submitted an expression of interest for a regional concept note which seeks to address disproportionally low treatment access in West Africa (Figure 1). The EOI framed the urgent need to address barriers to access, which make 90-90-90 a distant reality for the region. For example, in Liberia just 21% of people living with HIV are on treatment; in Guinea Bissau, just 19%.
Figure 1: Comparisons of Adult ART Coverage (UNAIDS, 2014)
The EOI was approved in June 2015 with a budget ceiling of $5 million. The goal is to increase access to treatment in 11 West African countries: Benin, Côte d’Ivoire, Gambia, Ghana, Guinea, Guinea Bissau, Liberia, Mali, Senegal, Sierra Leone, and Togo.
The proposed program would support the implementation of a regional community treatment observatory, empowering networks of people living with HIV to systematically collect and analyze qualitative and quantitative data on barriers to access. This may include documenting prices and stock outs of medicines, as well as experiences at health facilities. “You don’t need a PhD in epidemiology to do this,” says Solange Baptise, Director of Global Programs and Advocacy at ITPC Global. “It’s led by communities and people living with HIV. It’s what communities think should be measured.”
Data collected through the regional treatment observatory will then be used for targeted advocacy at regional level, aimed at bodies like the West African Health Organisation and the Economic Community of West African States.
The value-add of the regional approach is to standardize and centralize data which is currently being collected through several existing community treatment observatories operating at national and sub-regional levels. Examples include the Community Observatory on Access to Health Services (OCASS), which covers Burkina Faso, Guinea, and Niger. OCASS is led by RAME (Réseau Accès aux Médicaments Essentiels) and funded by the French government’s 5% Initiative. Another existing observatory is in Sierra Leone, where the national network of people living with HIV (NETHIPS) is implementing key populations treatment observatories in high burden areas of the country. “Harmonizing treatment observatories at the regional level is important,” says Sylvere Bukiki, Director of ITPC-WA. “At the moment, community monitoring around treatment access is very fragmented and this is hampering advocacy efforts in the region.”
In preparation for concept note submission on 1 February 2016 – the second and final window for regional applications – ITPC-WA has convened a widely consultative engagement process. Taking stock of lessons learned from the first round of regional concept notes, which revealed the high cost of regional dialogue requirements, ITPC-WA employed innovative consultation approaches which were both more inclusive and less expensive.
First, an online dialogue was held in November and December 2015, attracting 157 responses from people in region on their priorities for the proposed program. The online dialogue revealed a consensus around three main barriers to access in the region: inconsistent availability of ART, poor quality of health services, and a lack of enabling legal and policy environment. Based on these gaps, participants in the online consulation emphasized the value of a regional watchdog over national implementation. Communities felt that the regional approach to monitoring treatment access would improve the availability of data, coordinate existing initiatives, and facilitate exchange on best practices and technical assistance between countries.
Next, an in-person regional dialogue was held on 2 December in Harare, Zimbabwe, on the margins of the 18th International Conference on AIDS and STIs in Africa (ICASA). By allowing many participants who were already there for the conference to also engage in the regional dialogue, this saved further resources and allowed for even wider participation.
During the in-person meeting, the conversation focused heavily on the World Health Organization’s new ART guidelines, which recommend that ART should be initiated in everyone living with HIV at any CD4 cell count. Participants discussed the feasibility of implementing “test all, treat all” policies in their region. Reflecting on this issue, one participant said “We do not have faith in the political will to achieve this. But if we don’t have faith in our leaders, can we as communities do something to achieve this recommendation?”
As the dialogue turned to issues of sustainability, a young man from Senegal said he had confidence in the long-term viability of the program: “Many partners have started to implement observatories. Some started with other partners, others just did their own initiatives. I think this shows that the sustainability is there, because this is an existing initiative. The need is just to centralize this information collection.”
With the release of UNAIDS’ 2015 World AIDS Day report, the importance of location-specific information has never been more clear. All too often, global and regional averages mask national and local level disparities. Investments and interventions must be able to strategically target the right places with the right things. This is only possible with the right data. “The idea is to document a regional state of affairs that informs the global conversation about access to treatment,” says Christine Stegling, Executive Director of ITPC Global. With a regional treatment observatory in West Africa, communities and people living with HIV will be at the forefront of that conversation.