We are not making a flippant statement or trying to cry wolf, but we have a crisis in our health system which will have a devastating impact if not addressed. More specifically we have a crisis in the quality of health services for the millions of people living with HIV in South Africa.

The result is that tens of thousands of people die every year from AIDS, leaving families devastated, children parentless and communities reeling. Also, when those people who manage to survive against the odds do not receive good care, are not well supported in starting and staying on HIV treatment, and are not able to suppress the virus with antiretroviral medicines, the result is almost a quarter of a million (240,000) new infections. That is 240,000 people who have to turn to an already buckling health system with scarce resources at every level.

Recognising this crisis, the principal organisations representing people living with HIV in South Africa are coming together in a new effort we have called “Ritshidze” to monitor the quality of public health services in our highest HIV-burden towns, villages and districts and advocate together for the changes needed. Ritshidze – meaning “saving our lives” in TshiVenda – is led by the users of public health services, those of us whose lives and communities’ health depends on the public clinics and hospitals. Together, we will play our part in bringing to light the reasons so many people are falling out of HIV treatment and why so many in our communities never enter care in the first place.

As we do, we will be offering constructive suggestions about what can and should be fixed – and expect our officials at all levels to act quickly to address these problems. As we move towards National Health Insurance, lifting the quality of public health services is a critical precondition to a well-functioning system – which will only happen when our health leaders have more information about the problems in that system and are held accountable for delivering the quality of services we all deserve.

We believe in the public health sector in South Africa. We know how hard many of our frontline nurses, health workers, doctors and pharmacists are working each day to lift the health and well-being of our communities. And yet we know that too often the care we experience at some facilities drives people away from care instead of supporting them.

The data shows us that some clinics are doing well by supporting people living with HIV. Department of Health and PEPFAR data shows that at some clinics most people who start HIV treatment are retained in care – even in some high-burden facilities in Johannesburg, Tshwane, and eThekwini, where over a thousand people are newly starting HIV treatment in a given year.

But in other clinics the story is very different. There are dozens of clinics in areas where more people were pushed out of care in 2018 than started treatment. In some clinics, for every one person who started HIV treatment, two people were lost.

Why? A few months ago the Treatment Action Campaign, Positive Action Campaign, Positive Women’s Network, the National Association of People Living with HIV and AIDS and the South African Network of Religious Leaders Living with or Affected by HIV and AIDS in alliance with Health Global Access Project, the Foundation for AIDS Research, and Georgetown University’s O’Neill Institute for National and Global Health Law began piloting Ritshidze. Community members from our organisations, trained as clinic monitors, visit clinics and speak with staff and patients, gathering information about the conditions of facilities and the experiences of patients. We’re then able to compile a report that we can share with the facility manager and health leaders at multiple levels of government.

What we’re finding will not be a surprise to anyone who regularly uses the public health services in this country. Some clinics are well managed with hard-working staff who have the tools of the trade needed to do their jobs and who welcome patients into facilities that are far from state-of-the-art but are clean, safe, and well equipped. In other clinics, though, patients experience conditions that would make anyone who doesn’t need urgent care think twice about returning.

Community members are queuing from before dawn for clinics to open, in the hope they will be seen within a reasonable time – yet still wait six, seven, sometimes 10 hours before they receive any services. Patients report being shouted at, shamed, and in other ways treated poorly by some staff. People wait hours only to discover the clinic is out of the medicines they need. Some people living with HIV have their status disclosed to everyone in the clinic or receive wrong information by providers. Others worry whether they should even go to clinics with closed windows and poor infection control where they might contract TB.

These reveal major problems in the quality of basic services – but each can be fixed through interventions ranging from ensuring sufficient staffing and better supply chains to improving management and training. What is clear to us is that the problems are different across clinics and in different regions. But even clearer is that solutions won’t happen without attention and pressure from communities.

Accountability is critical to a well-functioning health system – and it’s clear to us that it is too often missing in our context. With support from UNAIDS and PEPFAR we are scaling up community-led monitoring to 400 of the highest-burden clinics across the country. As we do so, we will be building the tools and knowledge needed to hold our leaders accountable for delivering on the promise of a national health system that serves all. In the process, we will also be helping lead the fight against HIV by addressing the root causes of the retention crisis in South Africa.

In a moment when the science of HIV has brought breakthrough treatment and prevention options, the quality of basic services must not be the reason South Africa’s AIDS epidemic continues to ravage our communities. We are committed to saving lives. DM

Tshabalala is National Chair of the Treatment Action Campaign (TAC), and lead implementer in the Ritshidze project. Setshogelo is a Ritshidze Senior Project Officer and Pitso is a Ritshidze District organiser in Gauteng. Follow @RitshidzeSA for updates.