“Two of the key tenets of the programme are that it is peer led and community based. Being able to sit in front of another guy and have an open conversation because he has been in that situation, or being able to speak colloquially to each other, is really important. A large majority of the guys who are testing with us have never tested for HIV before. And for the majority of reactive results, it’s the first time that they have been tested. It’s a considerable thing to be able to say that we’re finding undiagnosed HIV in the community”. Adam Shanley is the manager of KnowNow. Here, he talks to masc about the free rapid HIV testing service, before administering a test to demonstrate how it works.
I ask Adam about the origins of KnowNow, which has carried out around eight hundred tests in the nine months that it has been active. “Rapid HIV testing is something that has been available for a very long time, but it hasn’t been part of sexual health screening in Ireland. There were all of these perceived barriers that we wanted to break down and see what [engagement] would be like from the community”. KnowNow embeds itself in the community by utilising nonconventional settings as testing sites in order to get at those who “might not ever cross the threshold of a clinic”. On this, Adam says, “being able to find out your HIV status in a bar normalises the process and normalises the opportunity for you to talk to your friends about it”.
Conversely, Adam acknowledges the extent of the appeal of a service like KnowNow. “It’s naive to think that we can funnel everybody into one way of engaging with their sexual health. There are people who want to sit across a desk from a doctor, who want to feel that they are being taken care of by a professional in that field. And that’s totally fine. But, similarly, there are guys who will come to a project like this, who want to sit with a peer and have that type of a conversation”. For Adam, whatever an individual’s preference for testing might be, it’s about having choice in approach.
Accessibility is essential to the proper functioning of KnowNow and has been the key to its success to date. Since its inception, uptake has been diverse in terms of the type of people participating in the service. That it is offered for free removes cost as a prohibitive factor to getting tested and feeling empowered, but KnowNow also defines accessibility and inclusion along the lines of language and ethnicity. “There’s a huge Latin American population in Dublin. One of the things I was conscious of when looking for guys to get involved in this was to have Portuguese and Spanish speakers. Because of that, we have been able to target the Latin American community and say that language isn’t a barrier if the service is something the community wants to avail of”.
KnowNow has received money as part of the Department of Health’s National Sexual Health Strategy, which was launched last October. However, the service is reaching the end of its pilot phase, which raises questions about the future of its funding. “I think it’s very difficult to offer something like this to the community, for it to be successful, and then for it to be taken away. We have the empirical data to show that it has been taken up really well. We’re also finding what we set out to find which is, one, people who have never tested before and, two, undiagnosed HIV in the community that would have went undiagnosed. I’m confident that we will find funding, but things are difficult. We have to be real about it – we’re in the middle of a public health crisis with HIV”.
After we chat, Adam tests me for HIV as one can typically expect to be tested by KnowNow. What follows is the kind of introductory dialogue one can expect, as well as a visual walkthrough of the testing process.
“Hey! I'm Adam, nice to meet you. Before we do the test we'll have a quick chat about what to expect and to make sure that this is the best place and time for you to have a test. Is that okay? Deadly. Also, this is entirely confidential – anything that you say to me will never be repeated. Dublin is a small place. To to protect your privacy, I won’t mention anything about testing if we were to ever meet again in another situation. Unless of course you want to talk about it and bring it up yourself and I'll happily chat away – is that cool?”.
“Is there anything that has prompted you to come along and test today?” Depending on the answer, the client and volunteer usually chat about the main routes of HIV transmission are, and maybe about PEP and more general STI testing information.
“Have you heard about the window period before? When we test for HIV, we look for the HIV antibody which is your body's response to the virus being present. For some people it can take up to three months for your body to make antibodies for HIV. If you've had condomless sex within the last three months, the test today won't tell you if you've picked up HIV in that time. Is that okay? You're totally welcome to come back again for a test to cover any other events that you've had more recently.
“So, there are 3 possible results that the test can produce. The first is one blue dot which means the test is negative. Two blue dots means the test is reactive for HIV. We say reactive instead of positive because this is an indication of your HIV status. To get a HIV positive diagnosis you would have to have a confirmatory blood test in a clinical setting – I'll tell you a little bit about that in a minute. The third possible result is a void result. That's indicated by anything other than the blue dots. Maybe nothing appears or it all goes blue. It's rare but if it does happen it's nothing to worry about, we'll just throw it out and try again. Is that okay? Cool.
“If you were to have a reactive result today, it is entirely up to you what you do with that information. We would definitely encourage you to link in with a clinical service though. As I mentioned before, this is a preliminary result. You would need a confirmatory result by having a blood test in a clinical setting. We have a great relationship with the Gay Men's Health Service on Baggot Street and also in Saint James', so we can fast track you in there for an appointment. This is a confidential and anonymous test but we would encourage you, if it was reactive, to allow us take some details so we can link you in with the clinic. Are you okay with that? It's only a decision you need to make if it comes to it.
“Let's say if your result was to be reactive today – would you have someone to confide in? A person that could support you with the result?”. Depending on the answer, the client and volunteer usually talk a little bit about available supports if a person wanted to avail of them, and they would also talk about the outlook for living with HIV.
“Alright. Is there anything you want to ask me? Anything you want to know at all?”. Depending on the answer, the volunteer will answer anything that might arise within their abilities to do so, and will signpost the client to information elsewhere.
“Are you feeling okay for me to go ahead with the test?”.
If you are, the index finger of your weaker hand is cleaned and – completely painlessly – pricked. A tiny amount of blood is absorbed by a small pipette. It is then mixed with an agent to make the result visible, before quickly appearing as a dot in one of the configurations Adam outlined above.