When William* began coughing and losing weight, he knew he was sick. When he tested positive for tuberculosis, a common infection associated with HIV, he grew afraid.
“At one point, I thought I was going to die of stress,” he says. If William had waited much longer to be tested at a clinic, he might not be alive today but says if he had been able to self-test, he might have found out much earlier.
Last year, the Ugandan government made a plan to introduce self-testing kits as a way of encouraging men to know their status. Now, organisations such as The Aids Support Organisation (Taso) are distributing at-home self-testing kits to a select few and gauging their effectiveness. Their research shows that most users approve of the kits, but there are still several disad-vantages.
With the kit, individuals run an oral swab over their gums that collects antibodies to test for the presence of HIV. The test takes about 20 minutes and does not require the supervision of a medical professional. An individual can perform it in the privacy of his own home.
Dr Mastula Nanfuka from Taso assisted in a peer-to-peer distribution study where 19 fishermen were given self-testing kits to distribute to their coworkers.
The men also received detailed usage directions, as well as counselling and training so they could provide proper support and information to their peers if they tested positive.
Although more than 90 per cent accurate, Dr Nanfuka says, the kits are only preliminary. If found positive, the individual should test at a clinic to confirm.
The kits were offered to 115 men, of which 95 accepted. Those who tested positive could call their peer’s mobile number for support. The peer would then advise them to seek counselling at a medical facility.
No one responded violently, but Dr Nanfuka said she knows self-testing will not always work out so ideally. “If you are testing for HIV, even if you test negative, you need to have emotional support. “Testing while you are alone can be risky,” she emphasises.
Henry Nsubuga, the director of the Makerere University Counselling and Guidance Centre, says he does not recommend self-testing for individuals who do not have good support systems at home or work. “We need people around us, especially if we are testing for HIV. “Even if you test negative, you could have an emotional breakdown,” he says.
For those who test at a health facility, a medical professional provides counselling regardless of the test results. Those who test positive are provided with resources for emotional support and directed towards treatment. Those who test negative may also need emotional support, in addition to prevention advice.
Despite the lack of immediate counselling for those who self-tested, Dr Nanfuka says there were no adverse reactions involving violence or suicide attempts in the study. She adds that the self-testing initiative is futile unless the men of the community can rely on one another for support.
The fishermen in the study received their kits for free, but self-testing kits would come at a cost if they were to be widely distributed through pharmacies. Dr Nanfuka estimates the cost of one kit to be about Shs20,000.
“That money could feed an entire family. Only those who have the money would have access to the kits and this would create a gap,” she adds.
However, Dr Rhoda Wanyenze, who assisted in a similar study with Makerere University School of Public Health, says testing at a clinic could be even more costly.
Many clinics offer free testing, but the combination of transportation costs and losing money from taking time off work could prove costly, she says, adding: “You do not have to sit and wait for someone to do it for you.”
Subsidised kits would allow access for all income levels, but it is unclear if that will be possible, Dr Nanfuka says.
While counselling and cost solutions are still in the works, Taso’s experiment indicated that self-testing can work. Although Dr Nanfuka says the results were not fully confirmatory, the option to test in privacy was widely preferred over testing in a clinic by men who participated in the study. “It is very beneficial in terms of stigma and a number of people have really embraced it,” she says.
One vital element of the study is that it involved men providing kits to other men. Dr Nanfuka says if men are encouraged to talk about HIV with other men and test together, they will be less discouraged by stigma. “We want to focus on those who are not likely to come to clinics, especially men,” she says.
Looking to the future
Today, William is the head teacher at Bright Future Primary School in Kampala, where he is living positively.
Whenever he is not teaching, he moves from classroom to classroom. As he enters a room of Primary Seven students he asks them, “Who here knows how someone can get HIV?” Almost every hand in the room shoots up.
HIV education is an indispensable aspect of classroom discus-sion at the school.
Outside of the classroom, William regularly volunteers with the Positive Men’s Union (POMU) where he shares his personal story and encourages other men to get tested.
Formed in 1993, POMU is an NGO focused on increasing male involvement in HIV testing, treatment and education. One of their most persistent goals is to encourage more men to test, but the task is difficult because many do not want to attend a clinic until there is no other option.
“The man sees himself as useless in the clinic,” he said. “We want to make sure people reach men exactly where they are.”
William encourages his students to learn as much as they can about HIV while in school so they will be prepared when they are older. If they know all the facts and are comfortable speaking openly about it, he said, then they will not be afraid like he once was.
William chose to be identified by his first name to protect him-self from the stigma that often attaches to HIV-positive people.
When your body detects something harmful (like a bacteria or a virus) your immune system starts to produce antibodies to try and defend your body. Each type of antibody is unique and this is what is detected by your HIV Self test.
The technology is very similar to a human pregnancy test. The process detects specific antibodies in your blood sample, (not actual HIV) and this is what produces the test Result Line (the second line).
Each self test kit has an inbuilt control line (the top line) This makes sure that the test has been performed and run correctly. The control line, is a sample control line and it will only become visible if the correct volume of human blood has been applied. This means you can be confident that your HIV test result has been generated by a test that you have done properly.
The time from when HIV infection occurs to when a test can correctly give a positive result is called the ‘window period’. During this period, someone who has been infected with HIV will still get a negative HIV test result because they will not have enough HIV antibodies in their blood sample to generate a positive result. This does not mean the person testing is negative. In fact, because there are not enough antibodies, the amount of HIV virus (the viral load) in their body is very high and this early (acute) phase is the most infectious period.
Everybody makes antibodies at different rates. A negative result may not be accurate until three months after infection. If you think you may have been exposed to HIV within the last six weeks you should go to see your local healthcare professional who will be able to send a sample of your blood for a laboratory test.