The Undetectables: U=U, PrEP and a decade with HIV
On 2 January 2020, I celebrated my 13th annHIVersary — the day I received my HIV-positive diagnosis 13 years ago. For World AIDS Day 2019, I gave the following interview to GMFA to accompany my photos in The Undetectables issue of FS magazine. I reflect on how living with the virus has changed and how everyone can be an HIV activist.
Name: Ant Babajee
Occupation: CRM Manager and MSc Applied Public Health student
How long have you been living with HIV?
More than 12 years — I was diagnosed at the beginning of 2007.
How long have you been undetectable?
Nearly a decade — I started medication in April 2010 and became undetectable soon after. I keep taking my medication every day and so I have been undetectable ever since.
Why did you decide to take part in the photo shoot?
I have proudly participated in quite a few photo shoots and videos for GMFA over the years, including The Undetectables campaign two years ago. I am passionate about changing perceptions of people living with HIV.
I did the #10YearChallenge the other day and dug up an old photo from Facebook of a school reunion in 2009. What struck me is, even though I wasn’t taking medication back then, I looked well and how after almost 10 years of being on treatment I know I am still healthy and — most of the time, at least — happy.
There is something really powerful about such a diverse group of undetectable guys standing up and showing the world: this is what living with HIV and being undetectable looks like. We can be your friends, your lovers, your relatives, and people from pretty much any walk of life you can imagine.
As a longtime activist, what changes have you seen (good or bad) in people’s attitudes towards HIV over the years?
It feels odd to be described as a longtime activist — I feel like I have been only been talking openly about living with HIV for just a few years. Assuming I am indeed a grande dame of HIV, personally I think attitudes and knowledge have got significantly better over the past decade.
Medically HIV has been pretty easy for me — I was diagnosed early and started medication when I needed to — but facing stigma and discrimination has been much harder.
For my dissertation research for my master’s in public health at Middlesex University, I am going to be looking at this question: have knowledge and attitudes among gay men in England improved since 2010? I’ll let you know the answer later in the year when I have crunched the data.
As I predicted PrEP [pre-exposure prophylaxis] — and all of the media coverage around the legal battle for access to it — was a game changer. It got people talking about HIV and how they can protect themselves against the virus more effectively. PrEP has made such a huge difference to the lives of many of my friends. Huge kudos and thanks to Greg Owen and all of the other campaigners who continue to fight for open access to PrEP here in England. If PrEP had have been available when I was HIV negative, I am pretty sure I would have taken it.
And yet attitudes are not changing quickly enough for me — either among gay men, among the public more generally, or the media. When over the years people in the public eye, like Conchita Wurst and Gareth Thomas, have come out as HIV positive, it has often been as a result of blackmail. People with HIV often do not get a choice about who they tell and when they tell them. We are often forced into it or have our status spread as gossip. No one should ever be forced to come out as HIV positive — it should be their choice.
Do you find people are generally educated about HIV and being undetectable?
In a word: no. But sometimes I am really pleasantly surprised: like when I first met my boyfriend (who is HIV negative) in 2018. I am never going to give up hope about changing hearts and minds.
When I got my diagnosis back in 2007, I was working as a journalist for the BBC. Back when I first became a local TV journalist in the early 2000s, I remember reporting on a World AIDS Day event — and I cringe at the thought of the questions I asked. I think it’s OK not to know about something. But when a medical condition like HIV has changed so much for the better, and for sections of the media still to portray people with the virus going about their daily lives as ‘lesser’ or ‘other’ is very wrong.
Researchers had known for years, even since the first people started on antiretroviral medication back in the 1990s, that HIV treatment worked really well for prevention, but we needed more data from research studies among serodifferent couples [one partner is negative and the other is undetectable] to prove conclusively that undetectable equals untransmittable. So it was so exciting when the results of the PARTNER and the Opposites Attract studies were announced that there were zero transmissions between the partners. As long as I stay undetectable I know I can’t pass on HIV — no ifs, no buts. U=U is scientific fact.
Some of the worst stigma I’ve faced has come from two sources who should have known so much better. My first HIV consultant told me that I wasn’t the sort of person he had expected to receive a positive diagnosis. At the time, I let this pass — I’m not sure I knew what to say — but I know now that’s a deeply stigmatising attitude to have. I think stigma is holding back some HIV doctors and nurses from telling their patients about U=U. Just as there’s zero risk of HIV transmission if someone is undetectable and keeps taking their meds, there’s also zero excuse for positive people not to be told about it.
Gay men can also be some of the worst perpetrators of stigmatising attitudes towards HIV. Yes, I get that you’re scared about getting HIV. I was too when I was negative. But by not informing yourself of the risks, and by treating positive guys — and negative guys on PrEP — like crap, you are the problem — not us!
How do you deal with people who may be misinformed or ill-informed about HIV?
I’m someone who likes to see the best in people, and so I think often people only say the wrong thing unintentionally. So, when I’m faced with stigma I try to calmly explain to the other person why they’re wrong. I only get frustrated when the person I’m talking to doesn’t want to listen or refuses to accept scientific evidence.
How has being an activist impacted your life (for better or worse)?
I don’t think of myself as brave for coming out as HIV positive. I see myself as fortunate to have got to a place where I feel safe and supported enough by my friends, my family and my colleagues to give interviews like this one. Sadly, for many people they just do not have that support network, or they aren’t given the platform to tell their story in their own way.
Being diagnosed HIV positive helped me to refocus the way I think about my life and what I want to achieve. Within six months, I had left the BBC and moved to London. I am so glad I did. It is funny how a dramatic event can change the course of your life. Arguably it has made me quite an impatient person — why put off until tomorrow what you can do today?
Coming out publicly as living with HIV has been the most empowering thing I have ever done. A few years after my diagnosis I started to gain confidence and eventually took the step of coming out as HIV positive on social media. I took part in a photography exhibition of 30 people living with HIV in 2012 to mark 30 years of the virus. Coming out on Facebook with a photo of the exhibition’s private view — to my friends old and new — was such an emotional experience. For those of us who fit under the LGBT+ umbrella, we all know what it’s like to come out — you suddenly feel like a huge weight has been lifted off your shoulders.
Over the years, as I have found the confidence I never thought I had, I have done things I never dreamed I would do: I have been interviewed live on BBC Radio 2 and Channel 5; I am featured in a BBC Three video that has had over a million views on YouTube alone; I have spoken at the European Parliament in Brussels about discrimination in healthcare; I have had numerous trips to the Houses of Parliament; and I have sat on a panel at Channel 4 with the Lord Speaker, Lord Fowler. It’s all a bit overwhelming really. I still describe myself as a naturally shy person, but I think I have managed to find my voice.
What frustrates you most about perceptions of living with HIV?
I find it really interesting we use the words ‘disclosure’ and ‘reveal their status’ when we are talking about HIV-positive people just talking about their health. Doesn’t that say a lot about HIV stigma, and the shame that it is often associated with an HIV diagnosis? Do we talk about other preventable and treatable long-term conditions in the same way? Our language around HIV definitely needs to change.
What else do you think needs to be done to get the message of U=U out there?
We need to reach everyone in our community with the U=U message. The end of new HIV cases is within sight here in the UK. But we need political will — not just warm words but decisive action — as well as social change to make it happen.
We need to reinvent HIV activism for the 2020s. Never forget that in other parts of the world HIV activism is still about the fight for access to testing and treatment. I know I am lucky I live here in the UK. If I were living in the US, unless I had health insurance, I might not be able to access treatment, and if I lived in some parts of the world, even in Europe, I would be fighting to access treatment and to access viral load testing. U=U is such an empowering message but it is only part of the picture.
What advice would you give to new activists or those looking to make a difference by openly talking about U=U or their status?
Go at your own pace and don’t ever feel guilty that you are not doing enough. Remind yourself that you are doing your best and that is good enough. I sometimes kick myself I didn’t come out as living with HIV sooner. But I know that’s the beauty of hindsight. I have to remind myself that I had to feel comfortable with myself before I could take that step.
Do it for the right reasons and do it for you. It is likely you will have to hold the hand metaphorically of the person you are telling. HIV is one of the most stigmatised health conditions there is, and that means it is tough to be open about it. For some people you meet your being open will be too much for them.
Take time away from activism from time to time and don’t neglect your personal relationships. It is so easy to burn out. Build your support network through volunteering for HIV charities and linking up with other activists.
Everyone can make a difference. Just telling one person — it could be your bestie; it could be a colleague; it could be your mum — makes a difference and is the start of your journey.
- The photos by Chris Jepson and a quote from this interview appear on the FS magazine website. More photos and articles from issue 175 of FS can be viewed online on the GMFA website.
- Much of GMFA’s groundbreaking work is unfunded — please consider making a donation.
- Find out more about PrEP on the I Want PrEP Now and Prepster websites, and find out more about U=U on The Undetectables pages of the GMFA site.
- HIV [Human Immunodeficiency Virus] attacks the immune system and weakens the body’s ability to fight diseases.
- Antiretroviral medication — also called ARVs, combination therapy, or HIV treatment — lowers the amount of the virus in the blood to undetectable levels, which stops it from damaging the immune system, and means it cannot be passed on to other people.
- HIV treatment is now extremely effective and easier to take than ever before. Many people take just one or a few pills once a day.
- A person with HIV should live just as long as an HIV-negative person — especially if they are diagnosed early and begin treatment.
- There is still a great deal of stigma about HIV. Stigma is damaging as it prevents people from getting tested, from accessing treatment and from living a happy and healthy life.
- Aids [Acquired Immune Deficiency Syndrome] can develop when HIV damages the immune system to such an extent that it can no longer fight off a range of often rare infections it would normally be able to cope with. In the UK, the term ‘late-stage HIV’ is now generally used as it is much less stigmatising. HIV treatment stops the virus from damaging a person’s immune system.
- HIV cannot be passed on through casual or day-to-day contact. It cannot be transmitted through kissing, spitting, or sharing a cup, plate or toilet seat.
- January 2019: Baring all about HIV and U=U
- March 2018: The Inheritance is this generation’s Angels in America
- January 2018: I have just found out I am HIV positive: what do I do now?
- December 2017: World Aids Day: community, fear and hope
- July 2017: Why I walk with Pride