World AIDS Day 2024: Unionising against HIV Stigma for 2030
I was proud to write a motion on HIV stigma on behalf of Greater London Region for the UNISON LGBT+ Conference in Edinburgh in November 2024. Below you will find my colleague’s speech to move the motion and my speech to move an amendment on behalf of the Black Members’ Caucus, as well as the text of the motion that was passed by conference.
I’m not living with HIV. But I’m a proud ally to people living with HIV. And I’d like to encourage you to be an active ally too.
Conference, imagine what it must feel like to receive an HIV diagnosis. Even though treatment has come on in leaps and bounds, it is still a life-changing moment.
HIV stigma must make it so much harder to adapt to your new circumstances and to look forwards to the future with hope.
Understandably you might decide to keep your HIV status to yourself and talk to no one about it outside your clinic. It is your choice who you tell and when you tell them.
Even though you are protected from discrimination by the Equality Act 2010, you fear the information will be used against you. You fear you’ll face judgement and rumours from loved ones, friends and colleagues. This means you can’t benefit from negotiating reasonable adjustments with your employer, and so you are forced to take annual leave to make your clinic appointments.
Imagine how isolating and overwhelming it must feel to have to keep your ‘shameful’ secret as the months and years go by.
Even if you know about the effectiveness of HIV treatment, and even if you know about U=U, still too many people don’t know about how much HIV has changed.
It’s now a preventable and treatable virus. So much so that, with the right support and treatment, people can live well into their old age.
But HIV stigma hasn’t changed, and so since our motion was passed at last year’s LGBT+ Conference, we’ve been busy in Greater London Region. We are on a mission to tackle that damaging stigma head on. We want everyone living with HIV to be treated with dignity and respect in their workplaces.
We organised two workshops at our regional training and organising day in February, a well-attended fringe event at our National Delegate Conference in Brighton, and numerous other talks throughout the year.
UNISON has also been playing a key role over the past year in helping National AIDS Trust to develop the model policy for employers who sign up to the HIV Confident charter mark.
This motion builds on our work in London over the past year and encourages all regions of UNISON to get Unionising against HIV Stigma.
I have two more suggestions for you to be a better ally to people living with HIV.
If you’re from a part of our community that has higher rates of HIV, please get tested regularly. Far too many people are still being diagnosed late after their immune system has already been damaged by the virus.
Later this month you’ll start to see people wearing red ribbons for World AIDS Day on 1 December.
I hope you’ll wear your red ribbon with pride — not just to commemorate all the loved ones from our community and beyond who we lost to AIDS, but also to stand in solidarity with all the millions of people who are living with HIV today.
They shouldn’t have to live their lives in fear and shame. HIV is a virus, not a moral judgement.
How our community came together in the AIDS crisis changed the world. As Conchita Wurst said when they won Eurovision: “We are unity and we are unstoppable.”
When seemingly the whole world was against us, we looked after those who were sick, and we organised protests to call for funding for research and effective treatments. In the 2010s we came together again to fight for access to PrEP on the NHS in England.
Let’s bring the best of our community to the fight against HIV stigma today, and let’s use UNISON’s strength to change what it means to live with HIV in our workplaces.
As I popped my Dovato pill this morning — I actually call it my Demi Lovato pill — I was reflecting on how HIV has always been an intersectional issue, affecting people who are mostly on the margins of society. As you do…
And people who are marginalised in whatever way are often spoken for rather than actively listened to and included in the conversation.
Everyone deserves to be seen and heard. But that is not enough: we all then have to make active efforts to include everyone.
It has warmed my heart beyond measure to see the Unionising against HIV Stigma campaign develop over the past year since our conference in Liverpool.
To know I have so many of our members standing alongside me as we address HIV stigma in our workplaces and our communities means the world to me. To my colleagues in the Greater London Region — thank you so very much for all your support!
I am going to quickly take a step back into the history books if I may. The Denver Principles were established in 1983 by a group of courageous activists with AIDS.
When I say I stand on the shoulders of giants with my HIV and LGBT+ activism, this is one of the many examples I could cite.
The Denver Principles stand as a guide for inclusivity, dignity and empowerment. They didn’t just call for treatment; they called for respect and the right for people with the virus we now know as HIV to define their own experience, health and wellbeing.
Here in the UK, Black communities are disproportionately impacted by HIV, as are trans people, gay, bi and other men who have sex with men, and other members of our LGBT+ community.
Conference, it’s a sad truth that racism and other systemic barriers, including for Deaf people, exist in our NHS, where many of you will work.
The Denver Principles highlight how all of us — living with HIV or not — should be fighting for people with the virus to have a voice and to advocate for one another, recognising no single narrative can capture all experiences.
Conference, I’m proud to have become the HIV poster boy, but I certainly could never represent the diversity of the lived experience of all people with HIV.
Today — more than 40 years later in an altogether different era of the HIV and AIDS pandemic — we should honour the legacy of the Denver Principles by ensuring our union and our community’s response to HIV is intersectional.
Without an intersectional approach, we risk leaving the most marginalised behind, reinforcing inequities in the very systems meant to protect all of us.
So, let’s continue to bring the power of our movement to the fight against HIV stigma — and let’s ensure we don’t leave anyone behind on our way to 2030.
Conference, I move this amendment.
Motion 27: Unionising against HIV Stigma for 2030
Five years remain until we reach 2030, and the UK goals of zero HIV (human immunodeficiency virus) stigma and zero new cases remain both tantalisingly close and yet still so far away.
Last year in Liverpool, conference passed a motion — HIV has changed, but our employers don’t know this — that has kicked into action the Greater London region campaign entitled Unionising against HIV Stigma.
HIV stigma — negative attitudes and beliefs about people living with or affected by HIV — continues to blight the lives of thousands of people.
Conference notes that more than 100,000 people in the United Kingdom (UK) are living with HIV, and many of these are from lesbian, gay, bisexual and transgender plus (LGBT+) and also Black communities.
Some 98% of people with diagnosed HIV in the UK are said to have an undetectable viral load. This means they are successfully treated with antiretrovirals, and the level of virus in their blood is so low that it cannot be measured at their regular checkups. This also means they are unable to pass the virus on to their partners through sexual contact, which is known as U=U — or Undetectable equals Untransmittable.
People with HIV are automatically covered by the protections accorded to disabled people under the Equality Act 2010, although many employers and workers are not aware of this.
Conference notes that as a result of the Unionising against HIV Stigma campaign, there has been three sessions on HIV awareness and the law in the Greater London region, and a fringe event at the 2024 national delegate conference, all with the aim of equipping activists and members with the tools to tackle HIV stigma.
Conference supports HIV Confident charter mark programme which aims to reduce HIV stigma in member organisations and is a partnership between National AIDS Trust, aidsmap and Positively UK supported by Fast-Track Cities London. HIV Confident members commit to: increasing employee knowledge about HIV; improving employee attitudes towards people living with HIV; tackling stigma and discrimination within their organisation and providing people living with HIV a way to report any stigma or discrimination they experience.
UNISON can play an important role in helping to end a global epidemic that has claimed 38 million lives, and support people living with HIV to thrive inside and outside of the workplace. By adding our trade union strength to this campaign, we can help end new cases of HIV in the UK by 2030 and reduce stigma for people living with or affected by the virus.
Conference instructs the national LGBT+ committee to work with the national executive council and other parts of the union as appropriate to:
- Encourage the adoption of the Unionising against HIV Stigma campaign across all regions of UNISON
- Review UNISON’s guidance on HIV in the workplace with a view to publishing an updated version, to include best-practice use of language around HIV
- Raise awareness of the protections people with HIV are entitled to under the Equality Act 2010 and the Data Protection Act 2018 (General Data Protection Regulation)
- Raise awareness within UNISON that HIV stigma not only affects people living with the virus themselves, but also their friends and relatives, and other people they are closely associated with
- Continue to work with HIV Confident charter mark and work with branches and regions to campaign and encourage employers to become members of HIV Confident
- Support the Terrence Higgins Trust’s 2030: HIV Time’s Up! campaign.
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.
Related stories:
- November 2024: Positively UK: World AIDS Day — uniting against HIV stigma for 2030
- July 2024: Unionising against HIV Stigma: tackling HIV stigma in our workplaces
- June 2024: UNISON stands against HIV stigma
- February 2024: UNISON: Let’s get organised — Year of LGBT+ Workers
- December 2023: World AIDS Day 2023: HIV has changed — but our employers don’t know this
- July 2023: “As a gay man, it fills my heart with joy to bring visibility to a community that has previously had nothing” — MDX staff working closely with Barnet community to raise profile of LGBT+ residents
- June 2023: MDX wins university of the year accolade at Queer Student Awards
- May 2023: Ant Babajee is a Stonewall Change Maker of the Year
- March 2023: Stonewall Award Winners
- March 2023: Inspiring HIV activist named Change Maker of the Year
- February 2023: MDX recognised for LGBTQ+ work with Gold Award from Stonewall
- December 2022: MDX’s Ant proud to “rock the ribbon” as face of World AIDS Day 2022
- December 2022: My World AIDS Day 2022
- August 2022: Middlesex University at Pride 2022
- February 2022: LGBT+ History Month, National HIV Testing Week, Middlesex and me
- February 2021: It’s a Sin: it’s not my story, but at last my history is on screen
- January 2021: My 14th annHIVersary: a day for hope, not sadness
- December 2020: Nothing about us without us: why it’s vital we amplify the voices of people with HIV on World AIDS Day
- 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
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.