South Africa loves to boast that we run the world’s largest HIV treatment programme. But when treatment starts with a test, is the country really getting it right? A leaked report shows we have a long way to go.
A leaked report reveals shocking new details about the quality of HIV testing services in many parts of the country, including an instance in which one clinic may have been using three-year expired materials.
The document is the result of a national Aids council-commissioned study to evaluate the quality of HIV testing services supported by the international donor the Global Fund to Fight Aids, Tuberculosis and Malaria. As part of this, researchers visited facilities as patients and tested for HIV at 47 clinics or mobile testing units in KwaZulu-Natal (KZN), Limpopo, Mpumalanga, North West and Free State.
Although the study wasn’t large enough to present a picture of testing services nationally, it revealed what researcher Tian Johnson described as, “a tale of two worlds”.
Some clinics — especially in prisons — performed particularly well.
But many other facilities flouted safety precautions, were forced to operate from tents that literally blew away halfway through test procedures or discriminated against some people who sought testing. Some activists say they see this kind of discrimination frequently, especially against the LGBTIQ+ community.
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Mobile units go flying mid-test
Almost one out of four sites weren’t storing testing kits in temperature-controlled rooms, the document — that was circulated among select HIV organisations earlier this year — reveals. Some mobile testing units did not have any way to ensure kits were kept at the right temperatures, while some that left cooler bags open through the entire testing process amid temperatures in excess of 35-degrees Celsius.
None of the five brands of rapid tests that are widely used at clinics in the country should be exposed to heat above 30 degrees Celsius, according to guidelines quoted in the report.
In two provinces, KZN and Mpumalanga, testing tents, as well as consent forms with patient’s names, were blown away as the study’s researchers tested for HIV. At one site in Mpumalanga, a nurse and driver had to try to physically prevent the tent from flying away during the test procedure while structures in another area of the province collapsed so frequently that nurses started to warn community members about it in advance.
Disturbingly, one site in KZN was in the possession of fluid used in HIV testing that had expired in July 2016. The fluid is added to blood samples during testing to produce the final result. When researchers brought the situation to the nurse’s attention, the staff member assured them that people providing testing services knew to always check the expiry date.
It is important to note that, according to guidelines, each positive HIV test must be confirmed by at least one other test and sometimes two.
Bhekisisa has been told that a second survey conducted among the country’s other four provinces also exists but this has not been made public.
‘A contravention of the covenant with God’
The experience of going for HIV testing could be even worse among those who need it most, including sex workers, men who have sex with men and other members of the LGBTIQ+ community.
As part of the study, researchers role played with healthcare workers — pretending to be, for instance, a sex worker looking for HIV testing and counselling. They found that even in cases where workers had been on sensitisation courses, they still stigmatised these groups.
In some instances, workers refused to speak about anal sex and told researchers that having more than one sexual partner was “a contravention of the covenant with God”.
Anal sex is the riskiest form of sex for contracting HIV, says the US Centers for Disease Control. This is because the rectum has a thin lining that can easily tear during sexual intercourse, making it easy for HIV to enter the body.
This, as well as a lack of access to health services, puts men who have sex with men at a high risk to contract HIV. A 2009 study conducted by Wits University and the Human Sciences Research Council, found that HIV prevalence rates among men who have sex with men were double those of the general population, according to research published in the journal AIDS & Behavior.
High rates of HIV infections among sex workers, men who have sex with men, young women and inmates make these groups — also known as key populations — focuses of the country’s latest HIV plan. With this strategy, South Africa hopes to ensure that 80% of people in vulnerable groups like these know their HIV status by 2021/2022 and that at least 80% are on treatment.
But a 2003 study, conducted by Unisa in Tshwane, showed that fear of being stigmatised can prevent high-risk groups from accessing healthcare. More than one out of 10 of the nearly 500 LGBTIQ+ community members surveyed by Unisa said they’d avoided seeking out care for conditions such as sexually transmitted infections out of fear of discrimination. About 6% had been refused treatment based on their sexual orientation previously.
According to Johnson, researchers weren’t able to establish if the poor quality of HIV testing services are driving away patients, but they do consider it a reputational risk.
“I do think that word of mouth is powerful and would imagine that sites that have a reputation for clinical and counselling excellence see return and new clients,” Johnson says. “I think that whether you are speaking about cancer or HIV or the common cold, health care that is respectful, affirming and supportive of the client will result in more people up taking the service.”
Missing patients, missing tests
With more than 4.5-million people on HIV treatment, South Africa’s programme is the world’s largest. But the first step to getting people onto antiretrovirals (ARVs) is testing — and the latest report isn’t the first to demonstrate serious gaps in this process.
Soon after he took office, former Health Minister Aaron Motsoaledi in 2010 embarked on an ambitious campaign to test 15-million South Africans in just 12 months. But by September, gaps had already begun to appear.
At a 2010 Rural Doctors Association of Southern Africa meeting, then vice-chairman of the South African National Aids Council (Sanac) and former executive director of the public interest organisation Section27, Mark Heywood, presented worrying data: From pre-test counselling to the final result, South Africa was losing people at each step of the HIV testing process.
Speaking to doctors, he demonstrated that although two-million people showed up for HIV testing between April and July 2010, only 1.7-million went through the process from start to finish while 300 000 left after pre-test counselling. Of the 300 000 people who tested positive, only 50% were referred for follow-up care, including ARVs.
The Gauteng provincial chairperson of the Treatment Action Campaign (TAC), Fikile Mtsweni, warns that as an activist she sees the effect of shoddy services daily. She is concerned that the government might be sacrificing quality as it scrambles to meet high HIV testing targets that are, at least in part, set by international donors.
“Standard of HIV testing services violate human rights because, currently, they are pushing for numbers in a way that force [facilities] to test everyone who comes for any consultation to get day-to-day… stats,” she says. “I understand that they want to put as many [people as possible] on treatment, but people need to be prepared.”
She continues: “The prevalence of HIV among young people, as a key population is high, but it’s [not] a solution [to] force to test them and forget about who they are dating. Education also is key to make them understand the issues that affect them.”
With regards to the queer community, she says the fear of being judged is keeping them out of the public sector. People Mtsweni works with often travel long distances to seek special, LGBTIQ+ friendly services and treatment rather than face public clinics closer to home.
The nonprofit organisation, Networking HIV & Aids Community of Southern Africa (Nacosa), is one of a number of bodies that train healthcare workers to provide HIV testing nationally. The organisation also provides quality assurance services to the HIV testing programme.
The head of communications and business at Nacosa, Sophie Hobbs, says the organisation is still studying the report but that it is working to strengthen its quality control mechanisms, including quality of services, such as employing “secret shoppers” to spot check facilities.
Hobbs says Nacosa is committed to following through with the recommendations of the report, which include producing and distributing a standardised HIV testing checklist to all facilities, standardising HIV testing training and strengthening the supervision of testers. The document also proposes that mobile testing services purchase simple cooler bags to help ensure testing kits are stored correctly.
Meanwhile, Sanac has welcomed the findings as they “reflect transparency” and the need to improve HIV testing services, according to its communication officer Nelson Dlamini. “We will work closely with the national department of health to ensure that we mitigate [the] issues raised in the report,” he says.
Sanac says it disseminated the report to stakeholders and organisations doing HIV testing and even held a meeting about it on the sidelines of the recent June national Aids conference in Durban. But the national health department maintains it had not seen the report prior to receiving questions from Bhekisisa several weeks ago.
The department’s deputy director-general for HIV, Yogan Pillay, says the department is currently reviewing its HIV testing curriculum, which already includes guidance on how to treat vulnerable groups such as the LGBTIQ+ community with respect. The curriculum is also being revised to include, for instance, guidance on the HIV prevention pill and HIV self testing. He adds that the draft curriculum is available upon request.
Johnson warns that, as the country continues to explore new options to prevent HIV infections, the quality of HIV testing services needs to remain on the national agenda: “As we advocate and agitate for a range of prevention options, we must make getting tested for HIV a safe and even desirable part of the journey towards a world free of this disease that has fundamentally shifted the way in which we live, love and die.”
[Updated 11:58am 7 October 2019. This story was updated to provide additional information on how HIV testing results are confirmed.]
Roxy de Villiers was Bhekisisa's social media content producer and engagement officer from 2018 to 2019.