South Africa is doing well on some of the UNAIDS HIV targets for 2020, but one target we are set to miss is ensuring that 90% of people diagnosed with HIV are on antiretroviral therapy (ART). According to the latest estimates from the Thembisa model, a leading mathematical model of HIV in South Africa, only around seven out of ten people diagnosed with HIV in the country were on ART in 2019. This can either be because people never started taking treatment, or because people started and then stopped.
While reliable estimates for 2020 will only be available in mid-2021 at the earliest, it is possible that the percentage of people diagnosed with HIV who are on ART might decline in 2020 compared to 2019. This is because COVID-19 and the associated lockdowns have constituted one of the largest shocks to our public healthcare system in many years. During hard lockdown, with movement restricted, many people were reluctant to visit health care facilities in fear of contracting COVID-19. The healthcare system itself reprioritised and many programmes and services were temporarily shelved. Visits to health facilities also dropped due to transport problems. In short, for many people it would have been a hard year in which to stay on treatment, let alone start treatment for the first time.
Welcome Back Services
Recognising the increased seriousness of the situation, Doctors without Borders (MSF) is expanding its ‘Welcome Back Services’. Launched in 2018, the Welcome Back Service, according to MSF’s Medical Research Manager Dr Kirsten Arendse, is a model of HIV care that aims to “improve engagements in HIV services and promote long-term retention and care”. The programme focuses on those patients that leave care and return to care on their own.
“It was developed by MSF in Khayelitsha in collaboration with the Western Cape department of health,” says Arendse.
“So, what we mean by engagement in HIV services is that people are involved in services, they go to their appointments, they take medication. And long-term retention means that we keep them in there, so they don’t start treatment, fall out of care, get lost and never come back,” she says. “HIV has evolved to become a chronic illness [and] people can live a near to normal life expectancy if treatment is taken adequately. Because patients require life-long treatment, they can come across many problems throughout their journey that [may] cause them to fall in and out of care. So what the Welcome Back Service does, is try create an environment that means patients don’t leave but when they do leave and they come back, they are welcomed back into service in a non-judgemental way.”
The problem the Welcome Back Service sets out to overcome is the reality that people often experience public healthcare facilities as being the opposite of welcoming – something on which Spotlight has reported on extensively over the years.
“There are often many delays that they experience and there is often an attitude that staff portrays towards these patients because they are quite difficult to manage and staff feel overwhelmed,” says Arendse.
She says with the Welcome Back Services programme, they try to be more patient-centred by reducing unnecessary delays, streamlining services that patients get, and setting up systems in a way that patients are not punished for not taking their medication.
“So we create tools and training to assist staff to know how to manage a patient like that when they come back to care,” she says, adding that the situation can get quite complicated often with potential treatment resistance or with very difficult social circumstances patients find themselves in.
Now, in an effort to get services disrupted by COVID-19 back on track, Arendse says “they have a health promotion team who work for MSF and many of them work in communities in Khayelitsha and provide health education on HIV and the importance of staying on treatment especially during COVID-19”.
“If they identify people who want to access care, they link them back to care through our campaign. The Welcome Back Service team is working on the ground in the clinics with the department of health, other stakeholders and with the City of Cape Town. The health promotion teams also use digital community campaigns through Facebook to get these messages across. They identify patients whose treatment has been interrupted and link them back to care.
Arendse says the Welcome Back Service has now expanded to three sites in Khayelitsha and they are planning on expanding to more sites in 2021. “Hopefully by the end of our programme we will be able to show that this model of care can be implemented in a broader context,” she says.
Government’s ‘Welcome Back’ campaign
The National Department of Health last year outlined the process of rolling out its own Welcome Back campaign and the outcomes they wanted to achieve. The aim of the campaign was to welcome back HIV patients who were diagnosed but did not start treatment as well as to welcome back into care, patients who started treatment but stopped due to various reasons.
According to a document outlining the programme the aim of the campaign was to, by 31 March 2020, “decrease, by 50%, the percentage of patients who were diagnosed as HIV positive but did not start treatment on the same day”. The department will also train healthcare workers to be welcoming to clients as well as to create a friendly atmosphere at facilities.
National health department spokesperson, Popo Maja says the department’s Welcome Back campaign is an old campaign that is being upscaled now in light of the impact of COVID-19 to healthcare services, especially to HIV services.
“COVID-19 affected people accessing health services. Others didn’t want to go to facilities and stopped treatment, so now we are encouraging people to go to facilities or pick-up points to access services and get their medication. We want people to access their medication and adhere to treatment. There is no need to fear and not take medication because one can’t go to the facility,” says Maja.
“We are encouraging and appealing to people to adhere to their chronic medication. They need to adhere to treatment as it is absolutely necessary to be protected from opportunistic infections and be healthy. Those who religiously take their medication are healthy,” he says.
Impact of COVID-19
Alison Best, communications manager at TB/HIV Care says they noted a significant impact of COVID-19 on their services and on their service beneficiaries and they are now working to ensure that everything is back on track.
“In the Eastern Cape, facilities were sometimes closed abruptly following exposure to a COVID-19 case. As a result of these closures, and a general fear of being exposed to COVID-19 while visiting a health facility, many clients missed their scheduled appointments. The decrease in clients accessing facilities also meant that the number of people accessing HIV tests dropped substantially. For some of our clients who are key populations, such as sex workers and people who use drugs, the impact was even greater. Some sex workers moved back to their home towns, losing contact with the teams providing them with services, or were unable to operate as normal, which again meant that teams could not access them at their usual place of work,” Best explains.
“Many of our clients who use drugs live on the streets, and some were afraid to access services for fear of being put in camps. Our teams were also [prevented] from providing services in some camps,” she says, adding that this meant fewer people were accessing HIV testing, fewer people were started on ARVs, and that some people were missing appointments or not collecting their treatment.
Best notes that during April 2020, there was a significant decrease in community-based HIV testing services due to the hard lockdown restrictions. However, the service offering of the community HIV Testing Services teams quickly stabilised and from May onwards the number of HIV tests increased.
“Fewer clients were initiated on ARVs compared to previous quarters. Within our programme offering services to sex workers, the number of people provided with HIV testing services dropped from an average of 2 500 to as low as 590 for April,” she says.
Best says they are involving other civil society organisations, other partners and affected communities in their catch-up plans. “Catch-up plans to make up for the lockdown losses have been drafted. [There is] already significant improvement in linkage to care statistics in some programmes.
We have initiated measures to deploy teams into communities to mobilise and educate people on the importance of testing and to offer HIV self-screening. We are working with the Eastern Cape Department of Health on a combined COVID-19 and HIV communications campaign. We are also encouraging patients to transition to the ‘Dablapmeds’ (a programme where medicines are distributed from a designated central point which is outside the normal clinic setting) method of fetching treatment in the community instead of clinics, and are working on streamlining service delivery through adherence clubs, and spaced fast lanes (the process that allows for patient’s clinic folders to be pulled and prepared early for a follow up then pre-packing of medications for patients and accessing them through a faster queue at the pharmacy),” says Best.
Regaining lost ground
Speaking on a webinar titled “Regaining lost ground on HIV due to COVID-19,” South African National AIDS Council (Sanac) executive manager for the National Strategic Plan (NSP), Coceka Nogoduka said “over the last two years the Total Remaining (clients) on ART (TROA) programme has grown by 9 to 10%. Over the last five months, the TROA growth has been -2.27%. To reach the target, the TROA growth needs to be 7.58%,” she said. “TROA needs to increase at least by 209 870 per month to achieve national 90-90-90 targets by March 2021. In June we started to see a decline in numbers of people accessing ARVs in our facilities, but with interventions we are seeing a change.”
Speaking on the same webinar Anele Yawa, general secretary of the Treatment Action Campaign (TAC) noted that staff attitudes at health facilities will have to improve for the HIV response to be successful. “Many people living with HIV and TB are defaulting treatment or changing clinics because [of] one or another reason caused by health care practitioners who have a negative attitude to patients [and] who are disclosing the status of people without their consent. We view it as a contributing factor to the numbers who are lost to treatment and follow-up,” he said.
Arendse, however, says one of their successes with the Welcome Back Services is attributed to staff care. “One thing that we really neglect in healthcare is looking after the health care workers who manage these patients. They are often very overworked, very overwhelmed [and] don’t get the support to provide care. So we engage on staff wellness and how their own lives and their own stresses can cause them to fall into this cycle of managing patients unfairly. So we try to create a more welcoming approach were they can recognise that their behaviours directly impact patients’ willingness to come back to the clinic for their next visit,” she says.
Poverty and stigma hampering services
Speaking on another webinar (hosted by the Africa Stigma and Discrimination Forum) Professor Linda-Gail Bekker, deputy director of the Desmond Tutu HIV Centre said we have come a long way-“especially in the area of treatment there has been fantastic interventions”. “However, we have been unsuccessful with stigma and it has affected us in so many ways. There is still an extraordinary prevalence of stigma. Stigma and discrimination plays a big role in HIV response. Stigma still holds fast,” she said.
Arendse agrees that poverty and stigma affect HIV services. “Poverty definitely increases the interruption of treatment. If you don’t have food and you’re taking medication that makes you nauseous then obviously you’re not going to take it, but that said there are so many new drugs that have [fewer] side effects and can be taken without food.”
Arendse says it is understandable that hunger does not motivate people to take medication. “If you’re living in poverty, why should your HIV take priority over feeding your children? We have to recognise that as a problem and we can’t blame patients for that situation.”
She says despite improvements in addressing stigma, it still impacts patient disclosure and treatment adherence. When patients don’t disclose their status they are much more likely to not take medication because they are hiding it from their family or they are hiding it from their partner. “So we try to support patients to disclose so that it doesn’t become a trigger for them to stop their treatment,” says Arendse.
*A representative of the Treatment Action Campaign (TAC) is quoted in this article. Spotlight is published by SECTION27 and the TAC, but is editorially independent, an independence that the editors guard jealously. Spotlight is a member of the South African Press Council.