Over five years ago, Mercy Tchupa from Jonathan Village in Traditional Authority Mlauli in Neno had never heard about HIV. But as fate had it, when she came to hear about HIV, she came face to face with it.
This was when she was nursing her ailing aunt who later died from HIV-related sicknesses.
“We were very affected as a family because apart from that she was a young person whom everybody was expecting to get married and start a family. But by the time we realised she was HIV positive, we had already spent a lot of money on various medications which were not curing her,” she says.
All the relations thought it was a ‘strange’ ailment for lack of a better name to it. It was until one health professional advised them to have her blood tested that they learnt she was HIV positive. Unfortunately, the realisation came in a little too late.
“I think she had never gone for HIV testing on her own when she was well because she thought there was no way she would be infected. Also, the different barriers that people face in order to access testing services might be another factor why she never had her blood tested for HIV. Sadly, we lost her just like that,” says Tchupa.
Roselyn Mwale, also from Jonathan Village, attests to Tchupa’s sentiments that there are different barriers to people to get tested and young people such as her are not spared.
“Long distances and busy environments in health facilities make it difficult for people to access HIV testing services,” she says, adding that: “No one wants one’s parents, relations or friends see you going for HIV testing let alone coming out with a solemn face from a testing room at a health centre as that is considered a hint that one has tested positive.”
For fear of being derided and called different names such as ‘dead person walking’ many people opt not to for testing.
When ignorance is not bliss
Knowledge of ones HIV status helps HIV-negative individuals make specific decisions to reduce risk and increase safer sex practices knowledge as their status allows them to take action to protect their sexual partners, to access treatment, and to plan for the future
However, the lack of knowledge about ones HIV status technically slows strides towards achieving the 90-90-90 targets aimed at eliminating HIV by 2030 as the country has embarked on a test-and-treat initiative in which those diagnosed with HIV start taking drugs immediately.
The 90-90-90 target, backed by UNAids, reflects the global hope that by 2020, 90 percent of all people living with HIV will know their status; 90 percent of all HIV-positive will be on regular antiretroviral treatment; and 90 percent of those on treatment will have viral suppression.
While Tchupa’s late aunt might not have had the opportunity to know her HIV status at a right time to seek treatment and plan for the future, the story is different for Tchupa.
It is also different for Roselyn Mwale, her fellow youths and others in rural and peri-urban areas of six high HIV prevalence districts of Mwanza, Neno, Blantyre, Machinga, Mulanje and Chikwawa.
This is because of an ongoing HIV self- testing study (HIV Self-Testing Africa-Malawi Cluster Randomised Trial: Star-M CRT) which is being implemented in the six districts by Population Services International (PSI) and Pakachere Institute for Health Development while the Malawi-Liverpool Welcome Trust(MLW) Clinical Research Programme is doing the clinical research part.
Moses Kumwenda, a senior social scientist in the Star-M CRT, says HIV self-testing is a concept where people get to test themselves for HIV without any support, for instance from a trained professional.
He says the concept was introduced to help meet the 90-90-90 targets as more people will know their status and thereby seek necessary treatment in good time, adding that previously there were challenges to reach the first 90 due to the HIV testing approach used.
“If you look at the HIV testing approach that has been used all over the country at health facilities, data shows that it is about 50 and 60 percent of people being captured.
“That is where there was a thinking that, maybe we should do more by asking people to test themselves in order to capture the remaining people who are unable to come to the facilities,” says Kumwenda.
However, the scientist says HIV self-testing is not something that is there to uproot or compete with the existing methods; it is something that is aimed at complementing the methods that the country already has.
“This is why we encourage those people that have self-tested to go to the hospital for a confirmatory test, thereby taking HIV self-testing as an initial screening method for now.
“It is more like a pregnancy test: People go to the pharmacy to buy a pregnancy test in order to screen themselves if they are pregnant or not. However, they still go to the hospital to be tested by a trained professional,” he says.
About Star-M CRT
PSI Malawi deputy head of HIV department Richard Chilongosi says there are a lot of questions that have to be answered before HIV self-testing can be considered as a standard way of testing in Malawi.
As such, the implementers are working in collaboration with the Ministry of Health who are mandated to oversee all public health activities.
“The Star project is in two phases – phase one is two years and phase two is also two years. So, we finished phase one in July 2017 and phase two started in August 2017 and we will be finishing it in July 2019.
“The primary objective of phase one was to understand the feasibility and acceptability of different distribution models to different groups of people. We had four distribution models that we were testing and evaluating,” he says.
The distribution models included community-based distribution agents (CBDAs) who were community volunteers selected via districts health office (DHOs) and community leaders.
According to Chilongosi, the CBDAs were trained on how to provide pre-test information, distribute HIV self-testing kits, provide post-test support to people who use the kits and also to help them to link to support and care after testing themselves, especially if they test positive. About 172 000 testing kits were distributed in rural communities using this model.
“Evidence from phase one shows that it is acceptable and feasible to distribute HIV self-test kits in rural set ups.
“An increase in uptake by adolescents and men was also notable. It was also interesting to note that 26 percent of the 172 000 who used the kits in rural communities have never been tested before for various reasons,” he says.
Chilongosi adds that, in a way, from phase one there was evidence that HIV self-testing can increase access to testing for people who are failing to test at public and private health facilities.
Phase two, he says, is basically to assess the public health impact of self-testing through generating additional evidence on the impact of self-testing to the national programme.
And according Department of HIV and Aids, Khumbo Namachapa, the results of the research will inform government policy on HIV self-testing.
“As a ministry, we will have to draw lessons from the research and also identify some gaps. Then we will come up with an implementation plan on how best we can implement HIV self-testing,” she says.
The research project is not only working in Malawi but also in Zambia and Zimbabwe and in phase two, the research is expanding to South Africa,Bostwana and Swaziland.