In our series of articles assessing progress towards UHC implementation, we hear activists from Indonesia, Kenya, South Africa, Ukraine and Vietnam on the challenges facing marginalised groups affected by HIV and the actions they are taking in the battle to ensure UHC truly leaves no one behind

Although all countries in East and Southern Africa have expressed commitment to universal health coverage (UHC) and are making moves towards it, implementation varies widely between countries. 

Many governments have already begun engaging with the process and are setting in place the mechanisms and policy changes that need to happen to rollout UHC. Some countries have embarked on major reforms. Examples include South Africa where discussions around a national health insurance scheme and primary healthcare re-engineering are taking place. In Kenya, a national insurance scheme is also being considered and ‘affordable healthcare for all’ is one of the President’s ‘big four’ priority goals. Other countries, such as Zimbabwe, Mozambique, Tanzania, Zambia and Botswana, are currently developing or redesigning UHC essential packages, redefining systems and conducting policy discussions.

Information gaps
One thing that unites all countries in the region in relation to UHC is a lack of clarity for civil society about what UHC is, how and where decisions about it are being made, what implementation could mean and how civil society can engage in UHC platforms and processes. 

“There’s a dearth of information on the implementation of UHC in the region,” says Felicita Hikuam, Deputy Director of the AIDS and Rights Alliance for Southern Africa (ARASA). “This is partly because civil society, which has traditionally worked on influencing and supporting the HIV response, is currently not focused on UHC to the extent that we should be. Many [civil society actors] are pre-occupied with adapting to other changes in the region, many of them funding-related. 

“But it’s also due to the way the UHC conversation has been framed and conducted. In the region UHC has been presented as really technical, and the space in which these conversations are taking place has been closely guarded. This is partly because governments fear that involving communities will result in an unmanageable situation due to the competing and unlimited priorities that may be presented. 

People working on HIV and activists from at-risk communities don’t really understand what UHC is, what it is not, and why it is relevant. There’s a general lack of knowledge about who the key players are and the best way to ensure the priorities of marginalised groups are reflected.

Funding and access 
A lot of services for populations most affected by HIV in the region have been externally funded, but as some countries transfer to middle income status the funding architecture is changing. “There’s a lot of push for national ownership of the HIV response,” says Felicita. “But we are really concerned that HIV services, particularly those for key populations that are not currently covered by governments, will not be covered [under UHC] because they are not considered a priority and because of the criminalised nature of some of the groups the services are for. “What are governments currently doing to address laws that criminalise certain populations? This is a key barrier to people from these groups accessing services, yet existing barriers are not being considered in UHC debates. This is something we will be looking to change through our advocacy work.”

Health economics 
Another priority for ARASA is to build capacity among civil society organisations so they can make compelling arguments about why it makes economic sense to invest in certain services and reach certain groups of people. But this requires robust evidence. 

“My understanding is that a lot of the national conversations about UHC centre around health governance and economics. To engage in these discussions, we will need a better understanding of these issues as well as evidence to back our arguments, particularly relating to service and coverage needs for communities most affected by HIV. 

But although data on key populations has got better in recent years, in some countries we still don’t know how many people we are talking about, what services they require and what will it cost. And if decisions are being made around who gets covered and what gets covered what does it mean for equity? What about the right to health and human rights?

“If we are dealing with people who are economists they may not be used to, or convinced by, the argument from communities most affected by HIV that they should be listened to simply because they are at risk. So it’s about how we shape our argument in a way that can be compelling but also show that community voices are important.”

The prioritisation of biomedical interventions 

Another advocacy focus for ARASA will be to establish what kind of HIV services are being included in UHC packages. 

We are concerned that biomedical interventions, particularly treatment access, PrEP and voluntary medical male circumcision will be prioritised above the community-based groundwork that needs to happen to ensure people from marginalised communities are aware of their right to health and to create a demand for services, including prevention-related services and commodities. 

“Even now treatment is the first priority and takes up the bulk of resources. That’s what governments focus on because it’s about giving a pill to someone, ticking the box and being able to say ‘we have X number of people on treatment’. It’s not really doing the hard work relating to HIV prevention, particularly for key populations, which is much more than just giving someone a condom. HIV isn’t a disease you can just manage in a healthcare setting; it’s about looking at the complexity of people’s lives and what determines the choices they are able to make.

“In order to deal with HIV, you need to deal with the social determinants of health such as gender equality, the legal environment, stigma and discrimination – all the ‘fuzzy’ things that often times scientists and governments don’t want to deal with. I think the HIV movement has done really well to continually push that message, which is something that needs to be brought to debates on UHC as well.”

Getting a place at the table 
Early in November, the Partnership to Inspire, Transform and Connect the HIV response (PITCH) and ARASA will bring together civil society partners from across Africa to strengthen their understanding of UHC and to identify opportunities. The meeting will ensure that community-led groups can participate in crucial national UHC debates. Part of this work will be to devise a plan so that activists are equipped to hold governments to account to the commitments they make in the outcomes document of the UHC High Level Meeting, in order to monitor UHC’s rollout.
“PITCH is enabling civil society to start to question what is happening on UHC,” says Felicita. “It is helping civil society engage in those conversations and find out where the opportunities are to influence and to push our interests.

Since the beginning of the HIV response people living with HIV have said ‘nothing about us without us’. With civil society actors working on HIV, we have become used to pushing our way into spaces and being included, being at the forefront of conversations. Now it’s strange to be in a position where again we’re having to ask where conversations are happening and why we haven’t been invited.

“We feel that many governments in the region are trying to keep plans around UHC rollout among a small group of technical experts, which has really sidelined communities most affected by HIV. One of the main barriers to engagement is just getting access to the table where these conversations are happening – and PITCH is helping us to link up with partners that have influence in opening up that space.”