Marginalised groups unite to hold stakeholders to account

Richard Lusimbo

Welcome to our blog series exploring distributed leadership.

Through the series, we ask and address some of the key questions around distributed leadership, including: how can we share power and decision-making? How can we support leadership among individuals and organisations? The themes and lessons from this blog series will inform the on-going evolution of the Frontline AIDS partnership and how we co-design new programmes.

Richard Lusimbo is the Research and Documentation Manager for Sexual Minorities Uganda (SMUG) and the Coordinator for Uganda Key Populations Consortium. Here he describes how marginalised groups united to speak with one voice, and how this has helped them hold partners to account.

Divide and rule

Marginalised people are meant to be at the centre of HIV and health programming, but too frequently we are not listened to or are left out. The result is that we are denied access to the health services we need.

In Uganda, we are frequently invited to programme planning meetings. But until recently, agreements in meetings were ignored. If we became disgruntled about the lack of progress, we might be excluded altogether. Programme design would continue without us, or we would be replaced by another more “agreeable” representative. Sometimes it felt like we were being pitted against each other, and that partners were going through the motions.

This was amidst a general background of hostility towards key populations in Uganda (men who have sex with men, prisoners, people who use drugs, sex workers, and transgender people). The key populations’ conference was cancelled in May 2018, and later in the same year representatives from key population-led groups were excluded from the National HIV Prevention Symposium.

Key populations unite and speak with one voice

We agreed that we needed to unite and speak with one voice. With support from PITCH we set up a new coordination structure to represent all key population groups, including my own network, Sexual Minorities Uganda (SMUG).

The Uganda Key Population Consortium (UKPC) was established in July 2018. It includes local groups that were previously not part of any network. Leaders from the national networks work together to help the wider consortium prioritise the advocacy issues they want us to focus on.

We exchange information with members of the consortium using a simple e-mail listserv. Members report what’s happening on the ground and send alerts about issues that need quick action. Through these regular communications, members are becoming experts in the challenges confronting other marginalised people. A sex worker leader in Kampala now understands the problems facing people who use drugs in rural areas.

Partners are more accountable

In April 2019 we had our first national meeting with representatives from 76 key population organisations including national networks and local groups from across the country. We agreed on a Steering Committee with members representing each of the key populations and regions.

Influential stakeholders joined us for part of the meeting: representatives from the Centers for Disease Control and Prevention (CDC), The AIDS Support Organisation, Infectious Diseases Institute and US funding partners PEPFAR and USAID. The big thing we pushed for in the meeting was adequate representation of key populations in programme design and implementation. We were getting news about the PEPFAR key population investment fund, but it wasn’t clear how our members’ organisations could apply for resources.

When the call for proposals went out it fell short of our expectations. So, we met with the Country Director of CDC and secured three major wins: 1) That our members were included on assessment panels to agree grant applications. 2) That the rules were loosened so that key population-led organisations could apply for funding. 3) We could get assistance in pre-bidding meetings to help us apply.

As a result of our new unity partners now take us much more seriously. We are better represented in the development of PEPFAR’s Country Operation Plan, and now we know what large implementing partners are contracted to do. We share this information with our members around the country, so they can insist that partners deliver on their commitments. Many of our members are now funded by the implementing partners to provide HIV services. For example, the Infectious Diseases Institute is funding 15 key population groups in Kampala.

Power shift to the communities

We have improved relationships with the Ministry of Health, Uganda AIDS Commission, and other civil society organisations. Because we can rely on each other we’ve been able to multiply our voices and magnify our impact. Having agreed our advocacy priorities as a group, any member can represent the consortium. This means we can raise issues on behalf of other key population groups in meetings with civil society organisations and thematic working groups.

This new structure, with its increased transparency and clarity, has led to a shift in power from the large implementing partners to us, the communities. It has meant we can hold stakeholders to account. This is critical in the HIV response and it will facilitate getting the epidemic under control.

Strategic partnerships

Support from PITCH has been the cornerstone. When we said we wanted to establish this community structure, PITCH partners (Frontline AIDS and Aidsfonds) listened to us. They understood the issues we were facing. It shows that when you have strategic partnerships between networks like ours and donors from the global north, you can get results. I would like to see other donors emulate this type of genuine partnership, and devolvement of leadership.

Of course, there are challenges. For example, there are no human resources to support the new structure. For me personally this means working 16 hours a day, effectively doing two jobs; my day job for SMUG and this additional role coordinating UKPC. However, this is a small price to pay for new opportunities to influence and improve the quality of HIV services and reach the most marginalised people in our society. I finally feel optimistic that Uganda could become the role model for how to mount an effective response to HIV.

Other blogs in this series:



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