Behind the Science: HIV self-test kits: Healthy Canadians podcast episode 6



Madeline Poplett: Hello and welcome to Healthy Canadians Behind the Science, where we get science specific about the health topics that matter to all of us living in Canada. I'm your host, Madeline Poplett. Today we have Adrian Betts, executive director of the AIDS Committee of Durham Region, back on the podcast to talk about HIV self-test kits and the importance of knowing your status. We'll jump into that in a moment. But first, a quick word from us.

Healthy Canadians is brought to you by Health Canada and the Public Health Agency of Canada. We aim to give you information and perspectives about the health topics that matter to all of us living in Canada. What we discuss won't always reflect the official positions or policies of the Government of Canada, but that's okay. These are conversations, not news releases. Okay, let's talk about HIV self-test kits.

Hi, Adrian. Thank you for joining us once again on Healthy Canadians. Today we’re doing the Behind the science portion of the podcast. Before we start, I'll have you introduce yourself and what you do.

Adrian Betts: Great, thanks for having me back. I am Adrian Betts, I’m the executive director at AIDS Committee of Durham Region, that’s an AIDS service organization just outside of the GTA in eastern Ontario that does three basic things: it provides support to people living with HIV; it provides harm reduction services and supports for people wanting to use injection drugs; and also education and prevention work for people most at risk for HIV, including testing.

Madeline: Okay, excellent. Well, you were the perfect person to speak to today. We want to speak a little bit more about the value of knowing your status and how testing is obviously a large part of that. It might be new information to some people in Canada that home test kits for HIV are available. How does an HIV home test kit work? How, what does it show the person?

Adrian: So before we get into the science, can I just say that home testing is a game changer? That really and truly, when you speak about a disease that has so much stigma attached to it, HIV, you know, it comes with other stuff that makes it difficult for people to even face testing or, or there are repercussions for testing, assumptions made about drug use or sexuality or behaviours, right? And so, accessing regular testing in a sexual health clinic, that's hard to walk into that space, get interviewed by a public health nurse and tell them what you did with that guy last Tuesday night. Right? And why didn't you use a condom? Right? Why is it you have your risk for HIV? Whereas a home test, like so many other home tests that's come before it, is a great way of, in the privacy of your own home, finding it out for yourself if the risk you experienced actually has... is there actually concern. You know? If you take a home test, you're still going to need to have them, if it’s a positive result, you’ll still need to get a confirmatory test, get connected to care and all that other stuff. But, um, but that, that privacy piece is really –gee–, really a game changer. And this test is really quite simple. It's a blood drop test using a couple of different chemicals that register the anti-, for the antibodies in your system. So if you, um, you know, drip some blood into a flat platform and then you’ll add the chemicals that will indicate with a visual display, whether or not you're HIV, uh, HIV positive, HIV negative or if the test is inconclusive. And so that gives you a place to move forward from there. Right? And so the test is really quite user-friendly, quite easy to use. The only time people trip up is that when they don't get enough blood for the test. I’m going to talk about that when we go through the process.

Madeline: Yes, exactly. We can expand on some of the steps that are involved with taking the test. You've already kind of explained the, how it works, so a little bit about the process. It's great information and it seems like I'm hearing it offers some peace of mind and like I said, equips you with some information to move forward with, then you can take the proper next steps depending on what you learn from the test. So before we move on to speaking about the test itself and showing examples of portions of the test, how does someone go about obtaining a test kit?

Adrian: That's getting easier and easier and easier, actually. There are several studies out there, testing the efficacy of self- testing, like a GetaKit study. And then there's also the REACH project, which is distributing HIV testing kits to AIDS service organizations across the country, all manner of places, and so you can, you can literally go to their websites and order a test online directly from them, or you can call your local AIDS service organization in your community, and they’ll either have them or be able to refer you to the people who do have them.

Madeline: Excellent. So there are options for individuals looking to obtain a test. In terms of accuracy, once a test is taken, is there a better time to take a test? Maybe a window? Can you speak to the accuracy of an HIV self-test?

Adrian: There's certainly a window. If you, so you had sex last night, is that enough time for you to develop antibodies going to show up in the test? Most likely not. The test itself will indicate clearly what that window is.

Madeline: If it's listed on the test, the individual can examine, would, whichever tests that they have gotten their hands on and it will let them know what the best possible window to test is. If they are testing in the ideal window, what is the approximate accuracy of an HIV test?

Adrian: There's, they’re surprisingly good. There was initially some concern with what the number of false positives, but there's very few false positives. What there can be is more inconclusive tests. Right? And so an inconclusive test just means take the test again. It means something in the test went wrong. Either there wasn't enough blood or there was too much of one chemical or perhaps the test kit itself was dysfunctional. They can be affected by temperature. Right? So if you, for example it was sent in the mail, that it was, was in a, in a cold place or in a very hot place, may, may have affected the test. But ultimately, no, their, their, their efficacy is quite high.

Madeline: Okay. So, within those parameters, it seems like this is an excellent option for somebody who is looking to get that peace of mind and learn about their status. We do have a test kit here in studio, so this is one of my first times ever seeing this, so you'll have to walk me through, but we'll open it up and take a look at this specific kit. It's an INSTI rapid detection HIV self-test. So, says over 99% accurate and results in a minute. First thing we see here, instructions, what looks like the antibody test itself and then a few vials and a Band-Aid. That's nice. There's several steps, it looks like. So we have color developer, clarifying solution, a sample dilute, dilutant and a lancet. So for the viewers who may not be watching this video, they are very small little pieces and they're color coded. Yes. So we have different colors for each piece. We also have another bag here which I’ll open, which I would assume is the actual physical test itself. Some of us may be familiar with different varieties of home test kits, so I would say sitting here opening this, it would feel as if it is approximately the same size that we're used to. Okay. So after a brief pause, I was able to get the bag open. So what we have here is a square, and as Adrian said, it is kind of in the neighborhood of between, you know, maybe a floppy disk or a little smaller than a CD. Um, it has a very clear circle on the inside, which is where I'm going to assume we eventually put some of the test material in to get our results. So I'll put that here as well. So, could you explain how we would operate the test? We have a lancet and a few color coded items here.

Adrian: So lay everything out on the table in front of you and get the instruction book and open it up. There will be written instructions, but also graphic instructions so it’s able for anyone to follow along whether you’re at a grade sixth level or lower, you can still follow the pictures and clearly see how to use the test safely and well.

Madeline: Looking at these instructions, that's absolutely correct. We have visual instructions as well as, I believe there's French and English included in these instructions here. So it says the first step is to collect the blood. Could you speak to those steps, Adrian, for us?

Adrian: This is going to be the trickiest thing for most people to do, right? And that's, you know, the fear of pain, the fear of needles, the fear of blood, all those things that can, that can cause people to go, ‘Oh, I can't do this!’ But this is the key part of the test. You have to make sure you have a healthy dollop of blood to go into that test, not just one tiny little drop. So what that means is when you have the lancet, you make sure your fingers are clean, so if there's not a wipe there, just wash your hands before you start. If there's a wipe, then use the wipe, but then you take the lancet, take the cap off and then you have the needle and you literally press that into the fingertip of your choice, right? And you want to press it into your finger or your thumb on the fleshy part at the tip of your finger or the tip of your thumb, so you’ll be able to manipulate the finger by squeezing so you can ensure that a healthy drop of blood forms and fills the …

Madeline: So a small amount of blood is not what this test is intended for.

Adrian: Well, it’s, no it’s not small, but we don't need to open up any veins here, but, but it, it is, you need to be, like it needs to be a significant drop of blood. So, if it’s a tiny little pinprick of blood, that's not enough. It needs to be a big, solid drop of blood. Think of it like a, like the sweat droplet or, or a decent tear.

Madeline: I understand. Okay, you have clarified that for me. So thank you for sure. Now we're looking at the test itself. The user has now provided an adequately sized drop of blood to the test. They're now adding this drop of blood to one of the specific steps here. So we have a dilutant, I believe it's called? I believe now this is what goes into the test itself. Is that correct?

Adrian: Correct. So you'll, you’ll use the dropper part of that and then literally just squeezing in a couple of drops into the tray. And you want to make sure that as the, that it fills the cup to the top, and then give it a moment to actually sink into the test, so, to saturate the test properly. So you can put one or two drops in there to make sure it, it fills the test adequately. If it's too dry, it's not going to get an accurate result, and so you want to make sure that enough of the blood sample makes it into the testing mechanism.

Madeline: Okay, so now that the blood sample is in the test itself, what is the next step? Do we add anything more to this test?

Adrian: Yeah, there's two other bottles.

Madeline: So I see a colour developer and a clarifying solution. With these instructions, specifically, it looks like you do the developer and then the solution. They are numbered one, two and three as well, so I suppose that's handy.

Adrian: That is handy. And so you take the, uh, the developer, the number two, and, and you do the same thing, repeat the exact same thing to before, which is open it and drop and make sure it has a chance to fill the little cup there and then drop down to its level and let the test get saturated again. And then you repeat that with the third vial.

Madeline: So all three vials are now in the test. We're about to read a result. What is the individual expecting to see? What can they expect to see? What will the individual read on the test following the three vials?

Adrian: Well, the hardest part of all is the waiting, because now you have to give it a few minutes for the test to become reactive. Right? And so, again, you can it depends on the test you have, see what indicates a positive or negative result. That would be the clearest way to do that. You want, there'll be a series of, of, of dots. Right? And one dot means one thing, two dots mean another, a partially faded dot means one more thing and so forth. So, make sure you have the instructions handy so you can clearly see what indicates a positive test and what does it indicate for this particular test?

Madeline: On this test specifically, it does have very clear visualizations of the test itself and the dots that may or may not appear based on what the result is. So we have a negative test showing only one controlled dot. A positive test will have two dots. Two dots mean your test result is positive. You may be HIV positive. Positive results must be confirmed by a doctor. They also have a note that says that an invalid test will only have one dot on the test in a separate location than the negative test. So it seems to be quite clear according to these instructions. This leads into my next question for you. When an individual has whichever results that they come out with, what is the next step? If they see a positive test on the home test kit, it says must be confirmed by a doctor, so we'll start there. What would you advise that person does next?

Adrian: The best thing to do is to contact your local AIDS services organization and reach out to them, and, and see if they can refer you where you need to go. And they can also help you with counselling. In fact, even before you take the test, if you have questions or you have concerns about the risk-behaviour that you were part of, you should reach out and speak to someone and ask for pre-test counselling and post-test counselling. Whether your result is positive or negative, you may want to speak to somebody about how you're feeling, right? Because just the, the, the whole notion of taking the test can cause some anxiety in some people. And so it's perfectly fine to ask for help and have someone be there with you on the phone while you take the test even if you want. You're still anonymous in this sense that you have someone there to talk to you. So I’d recommend that people try that. By going to a HIV clinic or to your home, to your GP, and asking for a confirmatory blood test. And they'll do a traditional blood draw, will send your, your blood to be tested for HIV and they'll do a viral load test as well. That will indicate how much virus is in your system at the time of the test. Subsequently, it will give you a clear indication of whether or not you have HIV for real and where in the process you are of, of infection. It is possible you were infected a few days ago, in which case, [inaudible], if it's more than a couple of days it could be very, very high. Right?

Madeline: There's more information to be taken at that point. So, a positive result, you can seek more clarification on the current state of your status. You can also seek out the adequate support for your own personal situation. Now that you're armed with this information, you can take whichever measures feel the most appropriate to you for your emotional state, and then you can also on the physical side, start on the right foot to receive the treatment as well.

Adrian: Well exactly. Treatment is a, is a, is a discussion. It's not just at a 100%, I'm going to start you out right away. Though, that is recommended. But it's possible that people may want to take time to consider, and if their viral load is low enough that they're not a risk to anybody else and they, their, they acknowledge t that they need to either abstain from sex or practice safer sex in the meantime while they decide what they're going to do about treatment, then they can make that choice themselves. Everyone has their own right to self-determination in this, you know, accepting treatment of any kind. But I strongly recommend that you actually start retroviral therapy right away. I mentioned, I often mention to people that if you’re diagnosed as a young person with, with HIV today, your life expectancy is actually now longer than the regular Canadian person because people with HIV see their doctors at least annually, often twice a year, and when they see their doctor, they're tested for everything because of the nature of an anti-immune sys— situation. They get tested for cancers and for kidney disease and liver failure and heart disease and yada, yada, yada. Which means anything that does crop up in your, in your biochemistry is caught early, and it's treated early, therefore, you have a healthier, longer life than most Canadians do. So I truly do recommend starting treatment as soon as you get, as you get a positive diagnosis.

Madeline: It starts with arming yourself with the information, it seems like. Now, speaking of that type of context, an individual today may be listening or watching this podcast, learning about this test, and then find themselves in the future in need of a test. They've obtained one, and it is, as you've even said, an emotionally heightened situation. You mentioned that you can actually speak to someone at the same time as administering the test for yourself and you remain anonymous. Could you speak a little bit more to the support available to someone who may want to take this test in the future? Is there a resource that they can look up to help guide them through the process?

Adrian: Yeah, there are several. There’s the REACH testing site, there’s the GetaKit testing site. Most ASOs will have a link to their testing programs. You can reach out to public health, they’ll have a whole page on testing, which will include probably descriptions of home tests and so forth. So there's hundreds of places to go to find the information on HIV testing and, and in particular self- testing. So just go into, into Google and type in HIV self-tests and put your local municipality in and the results will crop up, crop up very quickly. And then in terms of, of, you know— if you're a person who's engaging in high-risk behavior, for example, let's say you're a young gay man and you're engaged in regular sexual activity, you're out the young gay man, and you want to see what's out there and you're having a good time. Well, if you're concerned about condom breakage and, and, maybe, you know, being inebriated one night and not remembering whether you used a condom, then maybe it's time for you to consider PREP, which is pre-exposure prophylaxis. So that's taking HIV medication in advance of, of high-risk behaviour. So you go on HIV medication as a preventive treatment and it's 98, 98, 99% effective in preventing new infections of HIV. So there's, there’s reason to get tested and then to look at the negative result and also think, well now do I need to think about PREP as something I need to look at for the future? If you're someone who's not out there doing high-risk activity, not using injection drugs, not having multiple sexual partners, then your risk is going to be low. Well, then I'd say, well, test when you feel there's been an exposure. That’s when you test when you feel there’s a need. But for those people who are, who are, you know, considered high-risk, which is people who are highly sexually active or with their partners, are sexually active or they use injection drugs, or they’re a member of a priority population, you know, then, then those people should get tested more often or think about PREP.

Madeline: A negative result doesn't always mean no further awareness and precautionary action to be taken. It is just information that day for the individual who has taken the test. Thank you so much for that clarification.

Adrian: I think it's really key if someone has gone to the point of asking for a home test and taking it home and then getting that curiousness to open up that bag eventually, you know, start the process, there's a reason why. Right? You—you must have felt inside that you needed to do this test for whatever suspicion you have whether it’s for yourself or somebody else, or whatever, and it's just another tool in your, in your sexual health kit. Right? Like condoms, like the pill, like, like all manner of things, IEDs, I mean, it's just another thing that that contributes to a healthy, robust sex life.

Madeline: That was an excellent way to sum that up. A tool in a kit, equipping yourself with the information is important and making decisions accordingly based on what that tool provides for you. Adrian, thank you so much for joining us today. I really appreciate you taking the time out of your very busy schedule to, to help us with this, to go through this test and to provide this excellent information and just provide your background to this has been really wonderful. It's been an honour to have you on today. Thank you so much for joining us. Is there anything else that you feel you would like a listener to take away from this episode, specifically about the test kit or just about HIV in general?

Adrian: Yes, I want people to talk about testing. I want you when you’re out in social situations, at parties, at a bar, when you talk with your friends and say, ‘hey, you ever thought about taking the HIV test, a [inaudible] test?’ Because it's the stigma that prevents people from testing. Right? And so if you reduce the stigma and reduce the shame and make HIV testing just a regular part of your, of your – like I said, part of your regular sex health tool kit. It, it, it demystifies it. It makes it less scary, it makes it just something that you do as part of your self- care routine. And so I really encourage people to be, to be vocal about, uh, thinking “I'm thinking of taking an HIV test. You get them, you can take it home now. D’you guys think of doing one? Have you ever done one?” You know? You’d be surprised who would pop up and say “yeah I did one last year when I, when this happened.” You know? So I would just suggest people, even though it's kind of taboo to talk about sex in some Canadian environments you know, go for it.

Madeline: Thank you so much once again, Adrian for joining us on Healthy Canadians Behind the Science today. I know I've learned a lot and I agree with you. The more that we have this conversation, hopefully the more people it reaches. So, thanks again.

Adrian: Thank you. It’s a pleasure to be here.


Madeline: Thanks for tuning in to Healthy Canadians Behind the Science. If you're watching on YouTube, don't forget to click the like button below and subscribe to stay up to date on future episodes. Find us wherever you get your podcasts and leave us a review if you like what you've heard. For more information about the health topics that matter to you, visit

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