It’s quick, he said, and confidential. There’s no finger prick and no travel involved. In fact, the test can be conducted anytime — even right here and now.
Henry Makhasu, a 19-year-old community health worker, sat cross-legged on a straw mat outside the home of a married couple in their late 20s in the Neno District outside of Blantryre, Malawi. They watched intently as Makhasu demonstrated how to use an HIV self-testing packet: first setting up the test tube, then showing which parts of the gums to swab before inserting the test stick into the liquid for 20 minutes. One line in the test stick window indicates a negative result, he explained. Two means positive.
By the time he prompted them to try it themselves if they wished, both carefully tore their packets open and completed the process expertly — all without glancing at the small, folded instruction sheet included inside.
Makhasu is one of four “community-based distribution agents,” or CBDAs, in Malawi for the self-testing Africa project, or STAR, the largest HIV self-testing evaluation to date. It’s his job to distribute self- tests — swab kits that test for HIV antibodies in oral fluid, presented in lightweight packets about the size of a paperback book — explain the merits, describe how to use them in detail to community members, as well as offer support and counsel should someone come to him with questions about testing positive or seeking care.
While HIV self-test products have been approved for use in the U.S., France and the U.K., HIV self-testing remains uncommon on the African continent due mainly to policy and market barriers. There are also currently no rapid diagnostic tests for HIV self-testing that are prequalified by the World Health Organization, but studies have shown that it can increase access to testing and provide earlier diagnoses for people living with HIV.
Now, STAR, a two-year, $23 million project funded by UNITAID and implemented by Population Services International is working to show the WHO that the self-test reaches previously unreached populations — and to inform decision-makers at both national and global levels that the self-test is an accurate, worthy investment for Africa.
Such proof and ensuing change relies heavily on the success of the STAR project, which in turn must find suitable ways to communicate with local community members about how the self-test works, and why to use it. Most early iterations of an informational packet — even heavy on images — failed as a way to communicate the self-test process to local stakeholders. As a result, the importance of CBDAs, such as Makhasu, continues to grow as the medium of choice for communicating everything from proper testing technique to what to do if the user tests positive.
In northern Zimbabwe, where more than 8,000 self-test kits were distributed in two weeks during the March pilot, the STAR team has now gone through between 20 and 25 iterations of the self-test information sheet, said Dr. Karin Hatzold, project director of the STAR Project.
The project team started by determining a successful distribution and communication model, which involved text instructions in the local language to include with each test. But research conducted by Dr. Liz Corbett of the London School of Hygiene and Tropical Medicine — which is partnering with PSI on project research — in the Shamva District of Zimbabwe soon showed users’ accuracy of test reading improved once instructions were “overhauled” to be less wordy and more picture-heavy.
So, self-test instruction then took the form of a photo-heavy pamphlet for the pilot in Zimbabwe, Hatzold said.
Those early versions used symbols — like a knife and fork emblazoned with a large red X — to tell people they should not eat immediately before taking the test.
“But we should have known that the community in Mazowe don’t use a knife and fork to eat,” she said, referring to the district north of Harare where the pilot was rolled out in Zimbabwe. “It didn’t translate.”
Malawi’s instructions have also seen more than a few changes; the photo underneath the red X in its edition currently shows a plate of nzima, a common local maize meal dish, and the full sheet is written in Chichewa, a Bantu language spoken in the country.
But even then, a greater need for face-to-face interaction and demonstration became clear, prompting the STAR team to focus on training CBDAs.
“If you’ve never been exposed to any kind of kit, and this is your first time to follow instructions, then you’re going to struggle,” Corbett said.
In Chapita Village, Malawi, this was apparent when several village chiefs gathered to share with Devex and project leads their thoughts on the self-test in the weeks since it had been introduced. Each chief had tested themselves, but when asked how they knew the steps to conduct the test, not one of the four said they’d followed the instructions provided in the kit. Instead, each had memorized the process from a demonstration by their CBDA.
Community-based distribution agents
Every day, Makhasu travels door-to-door with his backpack to cover the four villages assigned to him. He’s stocked with an informational poster he refers to during his demonstration, a demo test kit, local clinic reference cards and the HIV self-testing kits themselves. He might distribute five or six kits a day in this way depending on how much ground he can cover — more if he heads to a community event.
He’s quickly learned how to adjust his pitch to his audience, broaching sports first with a group of young boys, or making sure to acknowledge a man’s busy schedule and how hard it is to find the time to get to a health facility for a test. Right now, he’s most successful in distributing self-tests when he catches a man or woman at home without their partner. And youth who act disinterested upon his first visit might seek him out later, not wanting their parents to know they’re sexually active.
Some older community members still doubt him from time to time, he said, based on his age, but he feels positive about the relationship he’s developed with the community members in the villages where he works.
“There might be some who can be denying my sayings, my advice, just because I’m young…but [my role] is just to tell them, to counsel them, on what is better for their lives … they deserve to know, in time, whether they are positive or negative,” Makhasu told Devex.
Overall, it’s become clear to project facilitators that CBDAs are crucial to the goal of increasing access to and familiarity with the self-test.
“It’s not acceptable for your next door neighbor to test you and read you your results, but it is perfectly acceptable to have them demonstrate a self-test kit,” Corbett said.
There are 11 more CBDAs, ranging in age from late teens to late 30s, being trained in Malawi, with a plan to train about 20, each of whom will cover several villages. The project expects to distribute about 170,000 test kits in Malawi during this first phase, which will conclude in 2017. By the time phase two is completed in 2019, hundreds of CBDAs will have helped distribute 2.7 million self-test kits in Zimbabwe, Malawi, Zambia and South Africa.
Recently, when a couple tested discordant — where one partner is HIV-infected and the other is not — they informed their CBDA rather than seeking the instruction of an “expert client,” or the HIV-positive community member available to speak with them at the local Chifunga Health Center.
If this trend continues — where those who self-test positive and who aren’t yet linked up to a facility go back to community distributors — it will become increasingly important to ensure CBDAs know what to do and how to refer them. The project already has plans to equip CBDAs with the ability to tackle those cases and will be adapting that element of their training, Hatzold said.
They may soon be using that training elsewhere in Africa, as the governments of Lesotho, Botswana and Swaziland have all already expressed interest in the self-test, Hatzold added.
WHO will release normative guidance in December 2016 but the STAR consortium, which includes the WHO, has worked with the Global Fund to release an interim note on “HIV self-test operational research” to allow self-testing to be included in Global Fund concept notes. In the meantime STAR is costing the self-test kits, currently valued at $3.15, to assess potential for private sector competition in manufacturing.
Eventually, the STAR project will also continue to roll out higher tech forms of educational materials. Already in Zimbabwe, they’ve used a video and a mobile phone app. In Malawi, they’re considering radio announcements with self-test instructions.
But for now, the role of Makhasu — and the calm, professional explanation presented to community members by him and his fellow CBDAs — remains paramount.