Nothing about us without us: why it’s vital we amplify the voices of people with HIV on World AIDS Day

Former BBC journalist Ant Babajee has been living with HIV since 2007. Now working in digital marketing and studying for a master’s in public health at Middlesex University, he calls for a national framework and funding for peer support and empowerment for people with the virus to tackle the epidemic of loneliness and isolation.

Living with HIV can be lonely. But I’ve been on a journey over the past decade. When I received my HIV-positive diagnosis back in 2007, I was working as a journalist for the BBC in rural Somerset where I grew up. Back then I knew just one other person living with HIV but he lived a considerable distance away. I was struggling with a number of challenges in my life: for one thing, I was in a long-distance relationship and we were starting to grow apart. I had symptoms I suspected might be the virus in October 2006, but it had taken me a few months to manage to get to the local GUM clinic for a test. I was seeing a counsellor through an employee assistance programme when I received my life-changing news in a phone call at 9.30am on 2 January — happy new year, Ant!

I was fortunate: my counsellor was pretty knowledgeable and empathetic about HIV; I was linked up at the clinic with a local support charity; and I had tested early, just a few months after I had experienced, what I now know were, seroconversion symptoms, when my immune system was first trying to fight off the virus, ultimately unsuccessfully, of course. Although I had been gripped with fear about HIV since I was kid, and especially since I came out at 19, now at 28 I knew enough about HIV to know there was effective and life-saving treatment. I would need to learn how to live with the virus.

Antiretrovirals heal the body but not the soul

The advice back in 2007 if you were diagnosed early was to wait until you reached the ‘magical’ CD4 count [a measure of your immune function] of 350, and then you knew it was time to start medication. I knew I was going to be OK medically, but emotionally I wasn’t so sure. My HIV-positive friend provided much-needed support and also moved to London around the time that I did later in 2007, but it became clear he was struggling emotionally even more than me, especially when he started medication. He tragically died a few years later, and I still carry with me the sadness and guilt that I wasn’t able to help him as much as he had helped me. The biggest challenge in coping with HIV is the stigma, discrimination and isolation the virus brings in its wake.

It was only when, almost by chance, I found out that Terrence Higgins Trust ran six-week newly diagnosed groups that things started to get better. A newly diagnosed group and peer support were not things I had been linked up with at my HIV clinic in London, but they made such a huge difference: I met other guys just like me and started to form my own support network of friends.

In 2010, I started medication and within a few months I had not only become undetectable, meaning crucially I couldn’t pass the virus on to my partners, but I also suddenly had so much more energy, physical and emotional. I started to volunteer for THT and a number of other HIV charities, and that was when I really found my mojo.

Through the UK-CAB treatment advocacy network, I started to learn a lot more about the medication used to treat and, now with PrEP [pre-exposure prophylaxis] to prevent, HIV. Information is power, and I went from not just surviving with the virus but thriving: I was owning this and helping others at the same time. I started to use the media skills I had learned as a journalist, although now I was the interviewee rather than the interviewer. I have even been inspired to do more professionally and to study for a master’s in public health. Most importantly, I met the most amazing and inspiring people — the people working or volunteering in the HIV sector — many of whom have become some of my closest friends.

Stigma and myths persist

Wind forwards to 2020 and, while things have certainly improved markedly, HIV stigma, misinformation and myths are sadly still widespread. Recent research at a number of London hospitals in high prevalence areas for HIV shows high levels of stigma and a lack of basic knowledge about the virus and how it is transmitted.

As written evidence to the HIV Commission, which publishes its findings on World AIDS Day, I submitted a policy paper originally written for my MSc. It made the case for interventions in the London Borough of Lambeth, which has extremely high incidence and prevalence rates for HIV:

“Any interventions around HIV should not leave behind people living with the virus. It is perhaps easier and simpler to advocate for expanded access to PrEP and to increase opportunities to test — a biomedical approach — rather than to advocate for a holistic and combination approach to HIV that includes better access to support services for PLWHIV [people living with HIV] and measures to tackle HIV stigma. A purely biomedical approach — and one that did not include PLWHIV — would be only half the picture. PLWHIV, when encouraged to be open about their serostatus through tailored support, can often become some of the most effective advocates for prevention measures such as PrEP in their respective communities.”

In my paper, I also discussed the concept of a notional ‘fourth 90’ to measure quality of life for people with HIV: a revision/addition proposed by Jeffrey Lazarus and colleagues to the UNAIDS 90–90–90 targets around diagnosis, access to treatment, and viral suppression (undetectability). That we have surpassed the 90–90–90 target in all areas of England and 95–95–95 in London is, of course, excellent news about the epidemiology of HIV — we should certainly celebrate our success. However, our attention should now turn not only to reaching those who are still undiagnosed or lost to follow-up while in HIV clinical care, as well as to ensuring there is equitable access to PrEP and sexual health services more generally, but also to how we can better support people with the virus to live happy and fulfilled lives as full members of society. When — and if — we reach zero new HIV cases in the UK by 2030, there will still be hundreds of thousands of people, just like me, living our lives day-to-day with the virus.

Public Health England’s recent Positive Voices survey found feelings of isolation and loneliness were commonly reported by 1 in 5 (20%) people with HIV:

“This had the greatest area of unmet need — 75% of people who needed help dealing with loneliness and isolation did not receive it. Feelings of loneliness and isolation were equally common across all ages, ethnicities, genders and areas of residence and similarly this need was mostly unmet for everyone.”

“You are not alone” — the power of peer support

I wanted to highlight a few shining examples of how peer support can empower people living with HIV to use their voices to cast off shame and self-stigma, to educate others, to find fun and fulfilment, and crucially to build a support network of friends. A virtuous circle is created: well supported and empowered patients are more likely to work constructively with the team providing their HIV clinical care; they are more likely to raise side effects in a timely manner, and they are more likely to adhere to their medication, making them much more likely to get to — and stay — undetectable.

In the Catwalk4Power video you will see the women deliver powerful, personal messages about living with HIV filled with confidence and optimism, as they strut, speak, and perform:

Closer to home for me is The Undetectables video by Brixton-based GMFA. One of the things I’m proudest of having been involved with as an activist, the video clearly and concisely explains the Undetectable equals Untransmittable [U=U] message about HIV treatment. U=U means gay men with HIV should rightly expect to be treated with more love and respect by their HIV-negative peers. Being involved in this video even helped me to come out publicly at work — one of the last barriers in my HIV coming-out story.

I am a volunteer at Positively UK, where there are countless examples of peer support and empowerment in action, including the Gay Talk group, of which I am a member. In the Changing Perceptions activism toolkit, co-created earlier this year by Positively UK, National AIDS Trust, and a diverse group of people living with HIV, I make the point that activism and advocacy comes in many forms:

“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. Coming out publicly as living with HIV has been the most empowering thing I have ever done. 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 speak out.”

As an HIV activist and advocate, I stand on the shoulders of giants, and I owe it to those who have come before me to use my voice to drive change. I am calling on the government to provide a national framework and funding for peer support and empowerment for PLWHIV. National standards for peer support have been co-created by HIV charities, community groups and people with the virus, but there is precious little statutory funding available for this best practice to be adopted in many cases. By 2030 we should aim not only for zero HIV and zero stigma, but also for 100 percent of people with HIV being supported by their peers. No one living with HIV should have to go through it alone.

• An edited version of this post appears on the National AIDS Trust blog

HIV facts:

• 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.

Related stories:

• April 2020: COVID-19: physically distant but still connected to my LGBT+ community
• January 2020: The Undetectables: U=U, PrEP and a decade with HIV
• 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