Is self-testing the route to go?

In 2016, as many as half a million (a third of) people who were HIV positive didn’t know their status.

HIV self-testing kits, now retailing at private pharmacies for between Sh500 and Sh1,000, were introduced to reach this untested population.

The kits promise privacy and convenience. Results are known in a few minutes. Nobody else has to know. Studies have already confirmed that they have increased – in some cases even doubled – the number of tests among groups known to shy away from VCTs, namely men and young people.

In a world where HIV/Aids is still met with anxiety, stigma and misinformation, and in the absence of a counselor to offer guidance and support in confronting a diagnosis, what does one need to consider before grabbing a kit at their local pharmacy?

27-year-Victor Karuga says he prefers the home kit and does not see any difference between it and VCT service. “Today the VCTs don’t place as much emphasis on counseling as they used to,” he says. “By the time you are done filling in the questionnaire, the results are ready. Why would I spend so much time at a VCT when the service is the same?”

He admits it may be more beneficial to have the guidance of a professional. “It’s a life changing moment, especially if positive. One might not know how to react and they might do something stupid. I choose the home test because I have always been sure that it’s going to be negative. But if I was worried, I’d go to a professional.”

Grace Kamau is a psychologist and HIV testing and counseling specialist at the Coptic Hospital’s paediatric and youth unit. She says that an important aspect of testing at a VCT is that it helps in confronting the fear of the unknown.

“Even when they are sure they have not ‘messed’, people are still afraid. My job is to make them feel safe. When people think of ‘positive’, they think of death. Having a counselor at hand helps you see that you can live with HIV.”

Florence Anam lives positively with HIV. She is also an advocacy and health communication specialist. She is a proponent of the self-test kit for its ability to access hard-to-reach populations.

HUGE BARRIER

“Men and young people detest the system of health facilities, which is a huge barrier to accessing care,” she notes. “I agree, counselling is important and I think it needs to go beyond pre- and post-test. But nowadays people have access to the Internet and information which is changing how they approach health care.”

As Victor previously noted, Anam confirms that HIV testing time has been reducing because people have been evolving and their need for it reducing.

“Besides, we have expert patients who are always there to provide support.” An expert patient, which she is, is an individual living with a chronic disease but has also acquired knowledge and education of the disease’s management.

“People reach out to me, even on social media, asking for support right before they do a home test, when they are thinking of doing the test or when they want to discuss the testing process with their partners.”

INFLUENCE ON SEXUAL BEHAVIOUR

An impromptu enquiry at a busy pharmacy in Westlands reveals that they dispense about 10 to15 self-test kits in a day, “and that’s on weekdays. On weekends is when people get busy!” an attendant animatedly puts in.

“I think the idea behind the self-test is good, but me I think it’s leading to carelessness,” she continues.

“People come here at night and you can tell they are getting it because they are on their way to have sex. So I am wondering, what happens when one of you turns negative and the other positive? Do you stop what you were about to do and go to the clinic? I practiced as a HIV counsellor for four years. When you go for testing, even if you are negative, you are also counselled about prevention. If it’s a couple, you tell them, as much as you turned negative, this is the first time you are testing together, so you still need to test again after three months."

The pharmacy attendant, who insists on remaining anonymous, reveals that most people buy two kits, meaning it’s for them and their partner.

Her concern is that people are performing the home test ‘just for the sake’. “They are doing it just for that time so that they can have sex. There is zero behaviour change.”

But Anam thinks the fact that people are grabbing it on their way to have sex is in itself a change in behaviour that we need to commend.

“Five, 10 years ago, this never used to happen. For random sex partners to pick the test alongside their condoms (which they might or might not use), shows that partners are speaking about HIV and are doing something to prevent infection.”

Furthermore, she believes it is in keeping with the current dating and sexual trends, especially in an age where people swipe right on Tinder in the morning and agree to meet and have sex by lunchtime.

As much as he is conscious of the fact that tests done right before (unprotected) sex do not take the window period into account, Victor reflects that, mentally, if you are having sex with people who want to do a self-test before, you are more likely to regulate your behaviour; to keep it within the confines of safety.

Overall he thinks self-testing is a good idea, “up until that point where one gets a positive result and they are alone. If they work that part out, it’ll be perfect.” The answer to this, Florence Anam states, is to give more messaging around the advances in treatment that have helped make HIV a condition that can be lived with.

I USED TO LOVE IT, NOW I DON’T

30 year old Lynette* had been gathering the courage to take a HIV test for months. “By the time I picked up the guts to go to the VCT it was closed for the day,” she says.

“So I went to a pharmacy and bought a kit, brought it home, read the instructions and then collected the blood. I waited and nothing was happening. So I tapped it really hard.” After waiting for about 30 minutes, three lines appeared. “The test clearly said to disregard any results after 30 minutes, but nevertheless, I panicked. The results were inconclusive but in that moment your brain goes to panic mode. Luckily my roommate was home so she calmed me down.”

Lynette says she had always been a big believer in test kits. “People don’t go to a VCT because of the stigma. Even for me, I was paranoid about someone recognising my car. Even when I was buying the kit I went to the dodgiest pharmacy I could find because of the fear of judgment!”

Lynette took her test at 11pm and had to wait until 9am to have the recommended confirmatory test.

“I was so nervous that when the results came back negative, I hugged the guy!” she laughs. “I don’t think I would take a self-test again. It was definitely not worth getting scared like that!” Later, she came upon a lot of negative online reviews on the kit she had bought, “so there is also the need to ensure the quality of the kits is good.”

She still believes it is better for people to take the test before sex than leaving it to chance. “It doesn’t mean that it’s a green light not to use condoms because there are still other STIs.

But I think people are more afraid of HIV than anything else. When you think about this, then I think the bigger battle is fighting the stigma.”

OF MEN AND YOUNG PEOPLE

40-year-old James Njenga says, “If I wanted to know my HIV status right now, I would cross the road go to a pharmacy and get a kit and not have to deal with people!” Asked why men are more likely to have that inclination he says, “I think that for men, knowing will not necessarily change their lifestyle, but other people knowing might.

"Here is the thing,” he explains, “no one likes their secrets being told. Even if it’s a counsellor, there is a level of trust you need in telling this life-changing thing to anyone. This goes back to vulnerability; this is your most vulnerable moment. When you are by yourself you don’t have to be vulnerable. You will have an emotional reaction. Vulnerability comes from trusting someone with that emotional reaction. They are both hard but at least one is private.”

James is of the opinion that you can’t let the perfect be the enemy of the good. “The good in this is people getting tested. The goal is to reduce infections in whatever way possible. While it is preferable for people to do it at a centre, doing it in circumstances that are less than ideal is better than not doing it at all.”

Grace Kamau, the HTC counselor at the youth clinic, states that most teens and young adults prefer the test kits as opposed to the standard VCT procedure. “They hate coming to the hospital and queuing even if it’s for 15 minutes. Some of them have more than one partner and they don’t want to keep introducing a different partner to a counselor all the time. So in as much as I am biased towards the center, we encourage them to get the kit.”

PHARMACY COUNSELING

 “Most people think it’s only about testing and that’s it,” Grace says. “But there is the psychological factor. Don’t just walk into a pharmacy and buy a kit because you are angry after just finding out your partner is cheating.

Take time to be mentally prepared for any outcome. One should be very sober to know that even when I turn positive, I am going to follow the instructions on the leaflet and/or call the help-line.”

Grace (and several statements by government officials) insists that pharmacists have been trained to not only administer, but also offer clients the pre-test talk / advice. But pharmacists in three private outfits – the aforementioned in Westlands, one in Loresho and another in Kangemi – are not aware of this ‘training’.

“There is nothing like we have been or need to be trained!” says the attendant in Westlands. “Even if it were true,” says the one in Loresho, “do you think I will be able to spare time to give that kind of a pep talk when I am here by myself?” His counterpart in Kangemi expresses the same sentiment. “Even in most pharmacy settings, do they have space that one can do proper counseling?!” he asks, getting angry.

At the end of the day, while it is important to get tested, do consider that while you are doing a good thing for your health, it is important to give the exercise the weight it deserves and take it seriously.

***

Before a home self-test kit, consider this

Florence Anam, our expert patient, offers the following pointers you must adhere to before you take a home test.

1. The test has two results. It could be negative as it could be positive.

2. There is need to confirm the test results at a health facility.

3. The testing is just a start; the next decision will be the measures to take in order to protect oneself from infection (if negative) or to seek treatment (if positive).

4. Consent is key, especially for young girls. Do not take the results under duress.

5. Are you safe, particularly if taking the test with a partner and their reaction could turn violent?

6. There is always someone out there willing to help – even if doing a test at home, you can find an expert patient to talk to.