It starts with a swab but does it end with a diagnosis? Why the trickiest part of DIY HIV testing happens after the test
The trick, says Ann Moore as she pulls the small white stick from the plastic packaging, is not just to swab the gums but to scrape them.
The doctor sticks the rod under her lip and drags it first along one side of her gums, then the other.
“You don’t want saliva. You want the cells – the antibodies.”
She places the stick into a tube of clear liquid and waits. One line would mean she is HIV negative; two, HIV positive.
In 2013, the United Nations set the world an ambitious target of “90-90-90”: the idea was that, by 2020, 90% of all HIV-infected people would know their status, 90% of those diagnosed with HIV would be on antiretrovirals, and 90% of people receiving treatment would be virally suppressed.
Just three years away from the goal date, and with only 65% of South Africa’s 6.8-million people living with HIV diagnosed, that first 90 is still tripping us up, according to a December 2016 policy brief by the National Health Laboratory Service.
“Not enough people who have HIV actually know their status,” says Moore, who works for Doctors Without Borders (MSF). She recently led a Khayelitsha-based study offering self-testing kits to people who declined a clinical test with a trained counsellor. Some refused because they were too scared to take the test alone. Others pulled out after being asked to provide names and contact details for follow-up. But the majority were sold on the idea of the 20-minute oral test.
“They really liked that they could test in their own space,” says Thobelani Mcayiya, one of the counsellors who worked on the study.
Many even asked whether they could take an extra test home for their partners.
Over the course of a year, 655 people who had refused a clinical test, which requires a counsellor to obtain a blood sample with a finger prick, signed up.
For all the apparent demand, it wasn’t so long ago that pharmacies were prohibited from selling HIV self-testing kits, a restriction that was only lifted by the South African Pharmacy Council (SAPC) in February 2015.
Still, the health department said it would not allow public clinics and hospitals to distribute tests that had not passed the World Health Organisation’s rigorous “prequalification” assessment. In July, an oral test called OraQuick became the first kit to meet that benchmark.
“Self-testing has moved faster than anything I have ever seen in the HIV space,” says Mohammed Majam, technical head of HIV self-testing at Wits Reproductive Health and HIV Institute (Wits RHI), which did some of the data-gathering for the OraQuick pre-qualification. “I think there’s been a global drive to get this working. People have recognised the importance and role it could play in closing the testing gap.”
The health department is now developing guidelines for implementing self-testing – or self-screening, as they call it. Those won’t be ready for approval until the end of September, the department said, but recommendations put forward by the South African HIV Clinicians Society in May give a glimpse into how self-testing might work here, including clear messages for users about how to access treatment services and an emphasis on having any self-test results confirmed by a healthcare worker.
Self-screening is not a replacement for traditional testing, health department spokesman Popo Maja says, but it is an option for those not using the testing facilities. Figuring out how to reach that group is where things get interesting.
When MSF crunched the numbers from their Khayelitsha study, one statistic was painfully apparent: only 5% of the participants were men. In some ways, this made sense. Of the two clinics at which MSF was offering self-testing kits, one was specifically geared at family planning and drew a crowd that was predominantly used by women. But even at the general clinic, where counsellors hung about waiting rooms trying to recruit men, the numbers were thin.
‘To me, that says facility-based distribution is not the right place to reach men,” says Moore.
But what about taxi ranks? Or offices? Or shebeens? These are the ideas that Majam is hoping to explore in an ambitious upcoming study. The HIV Self-Testing Africa (Star) initiative will distribute two million OraQuick tests throughout the country over the next two to three years. Wits RHI and the Society for Family Health will be responsible for 1.2-million of those – enough kits to proceed with tried-and-tested distribution models, while leaving room to push the boundaries in reaching undertested key populations.
“We’ll go out there and we’ll do the facility-based testing, but we want to use a lot of the time and resources that we have to try other things out,” says Majam. “We might fail horribly on some of the models. But I think we need to push the envelope.”
The department of health will be watching as the researchers try to hit the sweet spot of distribution models that are both cost-effective and effective. The goal is to deliver to the government an investment case for taking self-testing forward after donor funding dries up. To do that, researchers will need a way of getting answers back from the people using the tests.
MSF collected its data by asking participants to SMS their results to a toll-free number.
Majam cites another study conducted among truck drivers and sex workers by the Integration of TB in Education and Care for HIV and Aids (iTeach) programme last year. The research, the results of which have not yet been published, experimented with giving free airtime to participants: R5 for signing up, another R10 for sending back a cellphone photo of the test result.
The outcome? About 70% of users who signed up at the Gauteng study site completed the tests and sent back their results. At the Mpumalanga site, that number was 81%.
The study also had a strict entry requirement: only participants who agreed to having a blood sample taken — so that researchers could compare the self-test results against a “gold-standard” clinical test – were accepted.
“The key lesson learned was that people want self-testing,” says iTeach director Krista Dong. “They want it so bad that, even when made to get blood drawn and fill out paperwork, they were still willing to do it. It kind of goes against what people believed years ago, which was that a person would never want to test alone – that it’s too sensitive, too dangerous, that they’re going to commit suicide.
“It’s quite the reverse. People are so interested in having the opportunity of privacy during that very sensitive time that they’ll do almost anything to get it.”
What happens after that private moment is largely out of researchers’ hands.
Linking HIV-positive people to care remains the holy grail but, of the 17 newly diagnosed participants in the MSF study, only four were known to have begun antiretroviral treatment by the time Moore presented her findings at the International Aids Conference in Paris in July. When the truck drivers roll out and participants stop answering their phones, there’s little anyone can do.
Quite often people need to test several times before they’re able to accept their status, Moore says. And, more and more, she believes that South Africans need to be given the responsibility to make their own health decisions – to test in private without any responsibility to report the result and then to decide on their own when to get treatment. The desire to know, at least, was undeniably there.
“For the last two years, we have kept a box of tests freely available at the reception here, no questions asked,” says Moore. “They go steadily. I put 12 more in just today.”