Original blog published by Health GAP here.
Lotti Rutter (Health GAP) and Anele Yawa (Treatment Action Campaign)
‘We must arrive at the clinic as early as 4am and wait many hours to collect medicines. The clinic is under-staffed and the nurses are sometimes rude and treat us badly’.
‘I was struggling to adhere and didn’t know where to turn for help, so I stopped taking my HIV medicines. Now I’m too scared to go back to the clinic to ask to start treatment again because I know I’ll be shouted at by the nurses’.
‘Sometimes there aren’t enough HIV medicines at the clinic. They can give you a few pills and ask you to come back, give you a bottle to share with someone, or even switch you to an alternative. The disruptions and side effects make it hard to adhere’.
These are the typical and frequent type of complaints we receive from people with HIV who are trying to get HIV treatment and care through the South African public health system. These problems reveal a crisis that needs to be urgently addressed.
Over the past decade, South Africa’s HIV response has come a long way—from the dark days of AIDS denialism under then President Thabo Mbeki, to the establishment of the world’s largest treatment program. However, this achievement only reflects half of the story. The full picture of South Africa also reveals that more than 2.7 million people living with HIV are still not on lifesaving antiretroviral treatment. Despite the implementation of the “test and treat” policy in the country in 2016, the reality is that many people living with HIV are not on treatment—either never having known their HIV status, or more worryingly having started on treatment and then stopped. Compared to other countries in the region who are on track to reach epidemic control like Malawi, Zimbabwe, and Botswana, South Africa is lagging far behind.
Arguably the biggest challenge facing South Africa’s HIV response today is how to support many more people living with HIV to start and, importantly, stay on treatment. Doing this in the context of a dysfunctional healthcare system will not be easy, but cannot be shied away from. Yet instead of receiving commitment to do what it will take to make this happen, South Africa is facing the threat of dramatic cuts in U.S. government funding that risk derailing future progress, gambling with people’s health and lives.
South Africa is facing a potentially devastating cut in U.S. assistance for its’ HIV response
In January this year we learnt that the U.S President’s Emergency Fund for AIDS Relief (PEPFAR) is threatening to cut the annual budget to South Africa’s HIV program by as much as US $200 million or 30% (based on current funding levels). The reason: The country (the team that oversees South Africa’s PEPFAR program and its’ implementing partners) is performing poorly and for the amount of money being invested, too little impact has been shown. We agree that South Africa’s performance urgently needs to be improved. But a real plan to do this, should start by answering the question: Why hasn’t PEPFAR funding had greater impact?
Three reasons why PEPFAR funding isn’t having greater impact in South Africa
We think there are at least three reasons—none of which suggest a funding cut will help.
1. We’re still feeling the hangover effects of years of underinvestment in South Africa’s HIV response
First, we cannot forget that in 2012, the U.S. government announced that it would reduce PEPFAR South Africa’s budget by 50% and transition away from financing direct service delivery. This policy of transition was pursued and PEPFAR funding for South Africa substantially decreased for several years, despite widespread concerns that it would undermine the country’s ability to control the HIV epidemic. It was only in 2017, after significant activist intervention, that this decision was reversed and funding levels were restored. But long-term damage, caused by this period of deceleration, at exactly the time when further scale up was required, had already been done. See, for example, this study that shows how the planned shift back to direct service delivery was very slow in coming. In February 2018, recognising the damage caused by several years of funding cuts, PEPFAR agreed to a substantial injection of new funds (a so-called “surge”) to help the country get back on track. For PEPFAR to now threaten to pull funding yet again, based on the impact of a short period of implementation is highly problematic.
2. The South African government is not doing enough
The South African government is not doing enough to fix the broken public healthcare system. The Treatment Action Campaign (TAC) and other HIV activists in South Africa have been calling on the government for years to do more, and faster, to address the crisis in the healthcare system that is undermining the HIV and TB response—calling on them to roll out innovative models of care and help failing clinics to improve. On some fronts government is moving—the Department of Health has announced a slate of policy changes to remove barriers to care and support accountability of health workers. This is a good start, but much more is needed.
3. PEPFAR’s team in South Africa is also not doing enough
The disappointing impact of South Africa’s HIV program is not new information for PEPFAR’s country team. In fact, in February 2018 in response to community demands PEPFAR committed to an intensive “surge”—a new injection of funds and a plan—to aggressively address the main drivers of the program’s poor performance. Some in Washington, DC have been worried that this plan didn’t work, but in reality it was never actually implemented. To date, it seems like the PEPFAR team and their implementing partners have yet to use this money for its intended purpose. Yet we are judging the future of the program as if it has.
For example, given major human resource shortages, “surge” funds were committed to hire an additional 8,000 community healthcare workers (CHWs)—the backbone of South Africa’s health system and a critical to a successful HIV and TB response. Although initially delayed by a now-lifted government hiring freeze on CHWs, we are told that these additional staff will only be hired starting from October 2019. Additionally the plan also included a promise to hire 12,000 clinical and clinical support staff on the frontline of service delivery, including doctors and nurses. More than one year later, less than 3,000 of these new staff have actually been hired. Worse still, due to transition in implementing partners nationally, the number of healthcare workers more broadly actually decreased.
From problems to solutions
The reality is that the HIV response is in meltdown. PEPFAR data confirms what we know from the ground, which is that people are struggling to adhere to ARVs, defaulting, and then being lost to follow up—this happens for a variety of reasons that are not being adequately addressed including a lack of treatment literacy information, the lack of psycho-social support and access to mental health care, and the fundamentally broken public health system which sees our clinics in crisis. The fact remains that ensuring everyone living with HIV and TB gets access to the treatment, adequate care, adherence support, and psycho-social support they need depends largely on having enough qualified and committed staff in place, and effective service delivery models that put people’s needs at the centre.
People living with HIV in South Africa need high quality services that address the current realities of the epidemic and investments that help strengthen the country’s weak healthcare system. PEPFAR should be funding (and spending existing “surge” money on) game-changing, evidence-based interventions that give people the best chance to get on and stay on treatment including through reaching into communities to bring healthcare services closer to those who need the most.
In March, HIV activists launched the “People’s COP”, a document that clearly outlines several interventions that would improve the state of the response, including measures to support people to stay on treatment. One demand included funding for HIV activists to monitor the state of clinics and assess the quality of HIV and TB services being delivered. People living with HIV located in the community play a pivotal role in identifying challenges and ensuring local- level accountability where the services are actually delivered. They are the people who need the public health system to work, and so are the first to notice when it does not. Without addressing clinic-level dysfunction, reaching epidemic control will remain a pipe dream.
We cannot shy away from the fact that the in country PEPFAR team and many of their implementing partners are under-performing. They must be held to account and do better—failing partners should be swapped for those who can deliver.
A funding cut is not the answer
To us the poor performance is not a mystery—it comes from doing more of the same. People living with HIV have solutions that meet their needs. A funding cut will only make it harder to implement these. PEPFAR, Global Fund, and government must all be held accountable for implementing high-quality programs. People living with HIV deserve it. So our message is simple: Fix the program, restore the planned funding surge, and intensify consultations with the South African government and HIV activists to identify the root causes behind people disengaging from care and fund meaningful responses to address these. The reality is that less funding and less support will cause most harm to people living with HIV. We can all do far better than that.