Unionising against HIV Stigma: tackling HIV stigma in our workplaces

I was proud to be a panellist at Unison Greater London Region’s event on HIV stigma at the union’s National Delegate Conference in Brighton on Wednesday 19 June 2024.

This significant session, chaired by Anu Prashar, Co-Chair of the regional LGBT+ Committee and LGBT+ Officer at Brent Local Government, brought together prominent voices to address the persistent issue of HIV stigma in our workplaces. Alongside me, the panel featured Jo Galloway, UNISON Regional Secretary, and Katie Clark , Public Affairs and Partnership Manager at Terrence Higgins Trust , who is also a UNISON member.

Below you can read my introductory speech for the session.

I am Ant Babajee. I’m 46 years old, and I work in the marketing department at Middlesex University London, where I am LGBT+ Officer in our UNISON Branch.

And I am living with HIV.

Those five words still have the power to shock and can make people visibly recoil in horror. But those five words and the self-acceptance they represent also embody one of the most effective activist and personal empowerment movements we have ever seen.

My diagnosis came at the beginning of 2007. Effective treatment for HIV had been introduced in the mid-90s and was well established by the time I needed it, and was much easier to take by then. Today I take just two pills every morning to control the virus and keep me healthy.

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.

To give you an example – my first HIV consultant, not long after I’d been diagnosed in Somerset back in 2007, said to me that he didn’t think I’d be the sort of person to have contracted HIV.

I often reflect on that and wish I could go back and remind him that anyone can get HIV – we can be your friends, your relatives, and people from pretty much any walk of life you can imagine. Although I happen to be gay, lots of my friends with HIV are straight.

Over the past decade – since I’ve been doing media and campaign work around HIV – many people have come up to me and said they thought I was brave for speaking out about HIV. I often joke that I am now the HIV poster boy, and actually I’m really proud of that!

The thing is I’m not brave: I’m fortunate. Fortunate that I have the support of my employer, my UNISON branch, and my family and friends. Many people living with HIV don’t have that.

I always think if I can make it easier for just one person, I’ve done my job as an activist.

Isn’t it remarkable we have a devastating virus that within my lifetime is now treatable, as well as preventable with U=U and PrEP? We should be shouting from the rooftops how amazing medical science is.

So much so that I can now get long-acting injectable treatment instead of daily pills, and I can’t pass the virus on to my partners because U=U – or undetectable equals untransmittable. It starts and ends with me medically and epidemiologically, and that amazing 2030 goal of no new cases of HIV is within reach.

But what about stigma? Well, that certainly hasn’t disappeared, even sadly in our UNISON policy documents.

Language matters. HIV is the virus, and AIDS is the advanced illness.

Thankfully I have never had an AIDS diagnosis, and people working in the field now prefer the less stigmatising term: late-stage HIV.

I was able to access effective, life-saving treatment before my immune system became damaged. I describe myself as living with HIV – with the emphasis very much on the ‘living’. I am sometimes a ‘patient’, but I am certainly not a ‘sufferer’ or a ‘victim’. I’d really appreciate it if you didn’t call me ‘HIV infected’.

And for those of you who work in healthcare, can we please stop with the double gloving and whispering with your colleagues about your patient having HIV? Or even worse is writing HIV in large bold letters on our hospital notes.

It’s illegal to discriminate against someone based on their HIV status, and yet National AIDS Trust’s inbox is full of cases where that’s still happening.

People with HIV often don’t 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. Don’t be that person who spreads someone’s HIV status as gossip.

And yet there’s lot to be hopeful about. It’s been amazing to see UNISON embracing the Unionising against HIV Stigma campaign over the past year, after I suggested we should submit a motion to our national LGBT+ Conference in Liverpool. I then co-led two workshops at our Greater London Region LGBT+ Committee training and organising day in February.

You might be asking yourself: what should you say if someone tells you they are living with HIV?

I think my best advice would be to thank them for telling you. But please don’t say: I’m sorry. I find it incredibly disempowering to have people pitying me. How about you ask them how things are for them? Do they have a social network of friends or peers they can talk to outside of their HIV clinic?

If they say they don’t, could you maybe signpost them to Terrence Higgins Trust, Positively UK , or another HIV support charity offering peer mentoring near to them? Is there anything you could do for them to be more supportive?

So, together, let’s create a world where people can move on and live their lives after an HIV diagnosis without fear, shame and stigma. We owe it to the loved ones we have lost to this virus, as well as to all the people living with HIV today, to do what we can.

We – as people living with HIV – deserve to take our places in the workforce. We deserve to be seen in society – not to have to live out our lives in secret.

We don’t want your pity. We want your compassion and respect. We do deserve to have our dignity.

We hold the power in our hands to make it better for all people living with HIV in the UK in so many interactions with public services that they will have.

Our union, our members and our employers have a huge opportunity before us. We can contribute to making HIV stigma a thing of the past, and we can help to support our members with HIV to live happy, healthy and fulfilled lives.

UNISON is the UK’s largest trade union, with more than 1.3 million members working in the public services, including the NHS and higher education, as well as the private, voluntary and community sectors and in the energy services.

• July 2024: UNISON stands against HIV stigma
• February 2024: Let’s get organised – Year of LGBT+ Workers

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.