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Why I Wish I'd Received My HIV Diagnosis at Home

My diagnosis in a clinic four years ago felt rushed and robotic. Looking back, I'd much rather have used a home-testing kit and let it all sink in before getting clinical support.

by Tom Hayes
Apr 28 2015, 2:50pm

BioSure, the first HIV home test kit in the UK, went on sale yesterday

This article originally appeared on VICE UK.

There's been a lot of noise in the UK press over the last couple of days around the availability, for the first time, of HIV testing kits that give you near-instant results at home. While similar tests have been available in the US since 2012, the first BioSure kit went on sale yesterday in Britain and the troops seem to have divided themselves into two neat camps: those who are pro home-testing, and those who are against it.

Firstly, let's be clear about what's changed. Until recently, you had two options for HIV testing: either you got tested in person by a healthcare professional, be that in a clinic or in a community setting such as a church or a bar, or you could provide a sample via mail. A laboratory would then run your sample and contact you with your results.

With the new home-testing kits you do it all yourself. You prick your finger, add the sample to the testing device, wait 15 minutes and, presto, you've got your initial result. I say initial, because despite the device's 99.7 percent accuracy, any positive result would need to be confirmed in a lab.

Those for the idea of home-testing say that people should have the choice when and where to test, and to be able to do so privately. Those who are anti the idea say that doing the test on your own, without the support of a clinic, could lead to people making irrational, harmful, decisions. Both are, obviously, valid points.

I received my HIV diagnosis nearly four years ago, on August 4, 2011, through an NHS clinic. The experience was horrific and, given the choice now, I think I'd have preferred home-testing.

On Thursday, July 14, 2011—you remember the specific dates—I was preparing to go on a two-week vacation to the Canary Islands with a group of friends when my phone reminded me that I was due to go to the GUM clinic for a check-up. I wasn't really in the mood, but went along anyway, gave all the appropriate samples, and put it out of my mind.

One week into my holiday I'm sitting by the pool when my phone starts ringing. It's a Birmingham number, but I don't recognize it. I ignore it. It rings again, and again, and again. I finally answer it out of sheer irritation.

"Hello, is that Tom Hayes?"

Yes.

"Can you come and see us about your recent tests?"

No, I'm on holiday. What's wrong?

"Shit."

I'm sorry?!

"Fuck... Don't have sex with anyone and call us as soon as you get back."

I knew at that moment that something was seriously wrong and quickly assumed the worst, that it was HIV and I was going to die. But I was on holiday for another week with no internet access. I sure as hell wasn't going to tell my friends and ruin their holiday. Needless to say I didn't enjoy mine. I didn't drink, I didn't go out. I just stayed at the hotel with the excuse that I had "food poisoning."

A week later, when I got back to the UK, I made my way to the clinic. I had the first appointment of the day and can still recall the acrid smell of bleach from the freshly mopped floors. The nurse called me through and, almost before my ass had touched the seat, she told me that my HIV test had come back as "reactive" and that they'd need to do another test to confirm that I was, indeed, HIV positive. She was nice enough, but the whole thing was hideously rushed. Before I knew it I was walking out of the clinic with a brown paper bag of leaflets that I'd had thrust into my hands.

I found myself in a park, looking through the leaflets, wondering how I'd gotten there. Some of the leaflets were overly simplistic and of no use to me. The others were ridiculously technical and equally meaningless. My mind fizzed with a series of questions.

What do I do now? Who do I call? Where even am I?

I ended up calling a friend who I knew to be positive, who managed to work near where I was, drove to pick me up, and took me home. The experience had deeply unsettled me. For weeks I ignored the calls, texts, and letters from the HIV clinic urging me to come in for my initial appointment after the diagnosis. Were they just going to rush me, too? Would they take my blood and hurry me out the door? What could they do for me anyway? I was going to die, after all.

It wasn't until I took the time to do my own research about HIV, about how far treatment and management of the condition had come, that I came around and went for that initial appointment. If I hadn't taken those steps on my own I'm not sure where I would be today.

Looking back, if these tests had been available in 2011, and if I'd had the presence of mind to use them, I'm pretty sure I would have handled the whole situation in a much better way and have linked into care much earlier. Not everyone's HIV diagnosis in a clinic is as bad as mine was—at least I hope not—but experiences like mine do happen. But for those who feel they don't need the clinical setting to take what for them may be a routine test, or for those who feel physically or mentally unable to go to a clinic, the HIV home-testing kits will be an invaluable asset.

They're not a perfect solution, but they may go some way to helping people find out their HIV status in a comfortable setting and help us reduce the number of people unwittingly living with HIV in the UK from the record high of 26,000—and that's good news for everyone.

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