Today 16 people in the UK will be told that they’re HIV positive, and 16 the day before that, and 16 tomorrow as well.
Sixteen lives turned upside down, but at the same time that’s 16 people taking control of their health.
National HIV Testing Week starts tomorrow (19 November) and will see NHS services and charities the length and breadth of the UK going out and making an extraordinary effort to get you to test for HIV. But why?
Because, according to the latest data from Public Health England, there are still 20,000 people in the UK who are HIV positive and don’t realise it.
Out of the approximately 110,000 people living with HIV in our country, myself included, nearly one in five of them don’t know that they have HIV.
We’re not great at testing here in the UK. We’re amazing at looking after people once they’re diagnosed, with some of the best rates of retention in care and getting people treated and undetectable. But the first hurdle, the testing hurdle, is where we fall down.
So why is that? We have access to free GUM clinics, we have postal sampling schemes, we have at home instant tests, we have community testing, we have more GPs and hospitals offering testing than ever before. So why are we still so bad at going to get tested? The answer, sadly, is stigma.
Stigma is borne out of fear, and that fear is borne out of lack of understanding – and it’s an easy place for any person or society to fall into. All you need for stigma to flourish is the unknown, in this case a virus, and a lack of appropriate education.
How I found out I had HIV
I was brought up in a nice village in Worcestershire. I had a happy and comfortable childhood. I went to good schools and received good grades.
What I didn’t receive, however, was sex and relationship education. I wasn’t taught about safer sex, I wasn’t taught about STIs and I wasn’t taught that being gay was an acceptable and normal way to live your life. I was not taught about HIV.
So I didn’t get tested, and I continued to not get tested because ‘HIV doesn’t happen to people like me’.
HIV was something that happened to other people, to people in Africa or people who inject drugs.
Why would I need to test? What if someone saw me going to get tested? What would people think?
Then in 2011 I tested HIV positive at a GUM clinic in Birmingham after being persuaded to go for a MOT by a friend. HIV does, and did, happen to people like me. People like us. People like you.
HIV and testing today
Years later we still don’t have mandatory or appropriate sex and relationship education in our schools.
I’ve talked to hundreds of freshers at local universities in the past couple of months – a worryingly high number of which didn’t know what HIV was, didn’t know how HIV was transmitted, or that thought it was still a death sentence.
So if you’re either oblivious to HIV or think it’ll kill you, why would you go and get tested?
HIV has changed so dramatically in the past 27 years since those ‘don’t die of ignorance’ tombstone adverts played on our TVs. It is no longer a death sentence; it is a long-term manageable condition.
People diagnosed with HIV today can expect to live just as long as their friends. People living with HIV on successful treatment, which is often only one pill a day, can become undetectable which means they cannot pass HIV on to their partners.
They can have relationships, conceive children naturally, travel the world and live out their dreams. But this can only happen if you get tested.
The later you’re diagnosed the more serious the health implications in the future. The later you’re diagnosed the higher your risk of an earlier death. The later you’re diagnosed the more people you could potentially pass the virus on to. All because of what, one simple test?
Where to test?
This Testing Week go and get yourself tested. Encourage your friends, family and co-workers to get tested. Talk about HIV and let people know things have changed.
I don’t care how or where you test, whether you do an instant test at home, whether you do postal sampling or if you go along to a GUM clinic. Just 15 minutes of your time could save your life, and lives of those you love. If you don’t know where to test you can head here to find a centre near you.
Don’t fall at the first hurdle. Get tested.
Tom Hayes is editor of Beyond Positive and a TV and radio commentator on HIV and sexual health.