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Today marks my fourth anniversary, or annHIVersary if you will, of life with HIV. Those four years have really flown past, so what’s changed? What does the future hold? 

Four years ago to the day I went into the Whittall Street GUM Clinic after receiving a somewhat upsetting phone call whilst I was on holiday.

Hello, is that Tom Hayes?

– Yes?

Can you come and see us this afternoon at the clinic?

– No I’m on holiday. Abroad.

Shit

– Sorry, what?

When are you back? 

– Just under two weeks.

Fuck. 

Don’t have sex with anyone and call us as soon as you get back.

*click*

Tom on Holiday in Gran Canaria 2011 - just before I got my diagnosis on the phone
Holiday in Gran Canaria 2011 – just before I got my diagnosis on the phone

So going into the clinic that Monday morning at 0900 was pretty much confirmation of what I already knew. I’d been for a HIV test, they’d called me about the test. Today was just about telling me and confirming it.

I was the first in the clinic, I’d been waiting around outside since 0850 to be let in – not looking dodgy at all hanging around outside a very well marked sexual health clinic. Four years on I can still remember the strong smell of bleach, and the TV tuned into one of those home-improvement shows. The nurse called me through.

My bum had barely touched the seat when she told me my first test had come back reactive, which was a probably positive for HIV, and that they’d need to do another to send off for confirmation. I asked how unlikely it was to be wrong, she told me that they were rarely wrong and in all likelihood I was now HIV positive.

That was four years ago. Four years with HIV. So what’s happened since then?

We’ve seen new HIV retrovirals like doultegravir come out,  we’ve seen that some HIV drugs such as Truvada can be used to prevent HIV infection if taken regularly (although the battle for access is ongoing), we now know that a person with a sustained undetectable viral load is incredibly unlikely to pass HIV on to any negative partners and people with HIV are now living longer than before.

It’s not all good news unfortunately. People with HIV have been vilified by political parties on the right, we’ve seen researchers jailed for faking HIV research in order to further their careers, we’ve seen rates of new HIV infections continuing to rise amongst MSM despite levelling-off or even decline in other groups, and we’ve seen a new HIV epidemic take hold in Eastern Europe and Russia

What about with me then? What’s happened with Tom?

Talking in the European Parliament about HIV stigma
Talking in the European Parliament about HIV stigma

Well I started treatment very shortly after my diagnosis, as part of the START study, and at latest check my CD4 count was 781 (highest ever) and my viral load is still undetectable as it has been since I started treatment.

I’ve written for countless publications (such as Attitude, Gay Times, The Independent, The Times, VICE etc…) and appeared on national and international TV and radio to talk about life with HIV, the importance of early testing and the stigma that faces people living with HIV today.

I’ve had two documentaries made about my journey with, and my work around HIV.

I now work closely with a number of National and International organisations such as: UK Community Advisory Board (UKCAB), BHIVA (British HIV Association), EATG (European AIDS Treatment Group), UNAIDS, ECDC (European Centre for Disease Control), ILGA (International Lesbian and Gay Association) and the European Commission – on a wide range of topics from tackling stigma, HIV prevention, increasing testing uptake and equality of access to healthcare.

Me and Tommy
Me and Tommy

Mustn’t forget to mention launching this site, beyondpositive, which I created as a way to give other people like our columnists James, Lizzie and Stephen a voice on HIV – as well as keeping the community up to date with HIV related news and reviews. The site is now coming up to its second anniversary and I couldn’t be prouder. Our #PositivePubCrawls in Birmingham and Manchester have been a roaring success and I’ve been able to visibly see the difference those social interactions can make, how they can turn people’s lives around when they’re in crisis.

And finally, last but not least I’m engaged to the very lovely Tommy Hill, who makes me very happy and we’re looking to plan our wedding in the near future.

So what’s next?

Me with Luiz Loures, Deputy Executive Director of UNAIDS
Me with Luiz Loures, Deputy Executive Director of UNAIDS

I’m going to keep on doing what I do!

I’ve got some important pieces of work coming up with UNAIDS on empowering positive people across the world to get involved and make a difference. I think it’s critically important that we also get young people – both positive and negative, involved in the fight. I will be continuing to work with ECDC and the European Commission to improve sex education and access to sexual health services across Europe.

I will still be here fighting for the rights of people living with, or affected by, HIV – both at home and overseas. I’ll just be doing it with a martini in my hand.

Four years down. Many more to go.

Tom Hayes (@PositiveLad on twitter)

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4 COMMENTS

  1. Hats off to you Tom – what an achievement! Really proud to have got to know you and really looking forward to supporting you over the next few years. Watch out world! xx

  2. Awesome Tom…as a negative guy who had a positive partner ( now ex) I know how vitally important the work you are doing is. Raising the profile of safer sex and breaking down the taboo and stigma. Hugs xx

  3. What an excellent way to move forward with an HIV diagnosis. I remember my ‘reactive’ test result in 2002, which kind of made me think I’d escaped full-on HIV, well for a few seconds until it was properly explained to me!

    After my personal HIV experience I completely support START and would urge patients to commence treatment ASAP, to reduce the risk of chronic health problems and transmission. I didn’t start treatment for 12 years because my body controlled HIV enough not to develop AIDS. At the time I felt truly blessed, especially as the anti-virals scared me. Unfortunately a multitude of health issues developed over that 12 year period; depression, anxiety, rosacea, IBS, ME/CFS, endocrine problems and cognitive impairment.

    I suspect HIV is the root of all my health problems as they all disappeared for 4 months after starting treatment, but slowly returned to haunt me. Don’t give HIV a chance to do its insidious damage – start treatment!

  4. Good Luck to you Tom.
    I was first diagnosed with HIV back in 1985, yes thirty years ago. The first ten years were seriously scary and in those first ten tears I saw almost of my friends losing the battle with AIDS. Terrible times.
    The early medications were quite AWFUL, but hell, I’m still here to whinge about them. The modern medications are amazing and have minimal side-effects; DO keep all your appointments ‘cuz your doctor will monitor your bloods for (usually symptomless) things that most of us have never heard of.
    Keep taking the pills – hope we all die of old age.
    Sincere best wishes,
    Bob.

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