THE BLOG

I Am Not A Risk. I'm Healthy, Happily Married And I Cannot Pass On HIV

29/06/2017 08:22 BST | Updated 29/06/2017 08:22 BST
Ian Green

When you are diagnosed with HIV, often one of the first things to go through your mind is 'I'm a risk to others', followed on swiftly by, 'will I ever have a relationship again?'

But, a year ago, everything changed. The biggest scientific study of its kind - the PARTNER study - confirmed what HIV research has been indicating over many years. People who are on effective HIV treatment cannot pass on the virus.

This is because treatment suppresses the amount of the virus in your blood to levels that are so low, that it can't be detected or transmitted.

This little-known breakthrough could change everything for people living with and at risk of HIV, and has the power to help bring an end to stigma and even to HIV transmission in the UK.

Fear of infection has long been the biggest source of stigma and discrimination around HIV. And stigma is the biggest barrier that stops people testing for HIV, perpetuating the spread of HIV.  I firmly believe that breaking this cycle of stigma is the key to ending the HIV epidemic.

But we're not there yet. In our YouGov survey, which has come out today, we found that nearly 40% of the public would be uncomfortable going on a date with someone on effective HIV treatment, while 1 in 3 would be uncomfortable giving them First Aid if they needed help.

As someone living with HIV, who is on effective treatment and therefore categorically not infectious, this saddens me and mirrors my own experiences, even today.

I recently had an operation on my wrist and I informed my healthcare professionals that I was HIV positive and 'undetectable', as I always do. A big 'HIGH RISK' stamp was promptly stamped on my blood test forms!

This is just incorrect. I am not a risk, I cannot pass on HIV. In fact, anyone who hasn't had an HIV test recently would be far more likely to pass on HIV than I would.  But you won't see a 'HIGH RISK' stamp on their notes.

One in seven people living with HIV don't know they have the virus, and is therefore likely to be infectious as they are missing out on treatment. But this challenges every assumption out there about HIV.

With only 9% of the public aware that people on effective treatment can't pass on HIV, it is clear that there's a long way to go before popular opinion catches up with the facts.

We need to completely reset the way we think about HIV as a society.  Myths about how HIV is transmitted are not just deeply embedded in individual attitudes to HIV, they are embedded in our very structures - from boxes on forms, to needless processes such as 'double gloving' and giving us the last appointments of the day at the dentists.

Even HIV consultants themselves aren't always telling their own patients that they can't pass on the virus.

terrence higgins trust

My doctor has told me that I am 'undetectable' and that this means I will live a long and healthy life. But he's never proactively informed me that means I'm uninfectious - I, like many others with HIV, have learned this through reading about the PARTNER study and speaking to experts within the sector. 

If our own healthcare professionals aren't telling us this, for now it's up to charities and individuals to spread the word.

A global movement has started to spread the word that 'Undetectable = Uninfectious', often expressed as #UequalsU.  This began with one individual in the US, named Bruce Richman, who has galvanised a coalition of hundreds of expert organisations around the world to commit to getting this message out.

I am enormously proud that Terrence Higgins Trust is among these, and that we were one of the first organisations to adapt its messaging following the PARTNER study's findings. 

We did not take this step lightly and we wouldn't have done this if we were not confident in the science. We are one of the biggest HIV charities so we have a responsibility to communicate the facts.  That is why, today, we've launched our 'Can't Pass It On' campaign.

Only a year has passed since these results were published, almost to the day. It will take longer to unravel this in the minds of people living with HIV, let alone anyone else - we've got suitcases of baggage. Being treated as a danger to society takes its toll over the years and it won't happen overnight.

But I hope that by talking about this boldly and publicly, we can bring confidence and hope to those newly diagnosed with HIV.  When I was diagnosed in 1996, effective treatment had only just been discovered and we had no idea what it would mean.

To know that 20 years later, I'd be in a position to say that I'm happily married, healthy and uninfectious, is something I could have only dreamt of.  It's nothing short of incredible.

#CantPassItOn