World AIDS Day 2022 – why it’s so important that people living with HIV can be open about their status without shame

For World AIDS Day, Care & Support Director of Operations Lee Buss-Blair shares his passion on why it’s so important that people living with HIV can be open about their status without shame.

Watching the third series of Pose has reminded me about how bad the situation with HIV and AIDS was, even as late as 1994 (though to some of you that will be ancient history, but to me it feels like recent memory!)

I was working on the HIV ward in St. Bartholomew’s in London then as a (very young) Health Care Assistant. The situation was extreme, no effective medical treatments for the HIV itself, and limited options for some of the truly awful conditions that affected people whose HIV had progressed to an AIDS defining diagnosis.

But to add insult to injury, there was also the stigma and discrimination, which was rampant.

I personally experienced people not wanting to share or use cups or cutlery I had, just because I was gay. I knew first hand of examples where people had become unwell while out of London, or outside of a major city like Manchester of Brighton with large gay communities, who had been treated like a disease themselves by the doctors and nurses who were supposed to be caring for them.

And too many stories of families disowning sons, daughters, brothers and sisters over a diagnosis of HIV, only to swoop in during their final days and totally exclude partners and friends from their final moments.

And all this was within the context of a hostile press, and discriminatory laws such as Section 28.

One of my patients was a famous film director, and I will never forget the length photographers went to trying to get on to the ward to get a picture of him as he laid dying in his bed.

Outside of our community and our allies, of which there were fewer then, society truly hated and feared us.

But 1996 saw the introduction of the first effective treatment for HIV. It was like a miracle. People virtually stopped dying overnight. Hideous conditions like kaposi sarcoma, cytomegalovirus, progressive multifocal leukoencephalopathy, all eradicated.

And society’s attitude to gay people has also changed and become more tolerant. People know more about HIV than ever before.

So, sunny uplands and our heroes ride off into the sunset hand in hand, right? Those ending so rarely happen, sadly, outside of Hollywood.

People living with HIV still face stigma and discrimination. Many people still hide their status for fear of how people will respond, especially at work.

People still don’t understand aspects of HIV and fear it as a result. We all know how to avoid getting it through safe sex, but not enough people understand transmission outside of this.​​​​​​​

Not enough people know that someone on treatment with an undetectable viral load cannot transmit HIV to another person, it is a medical impossibility.

Undetectable=Untransmissible (U=U).

People often think that someone with HIV is not able to perform well at work without taking frequent periods of sickness absence. And ‘AIDS victim’ is still the insult of choice for homophobes across the world.

A recent survey in America showed the 50% of people would not feel comfortable being treated by a doctor who has HIV, a clear indicator of how far we still have to go in getting the U=U message out there.

I was diagnosed with HIV over 22 years ago, and while I don’t wear a badge declaring it, I’m also not ashamed to be open about it.

I have never been discriminated at work because of my status, but not everyone is as lucky. But I have been discriminated against in my personal life.

Before I met my husband, I was unfortunate enough to go through the soul sucking experience of using dating apps, where discrimination is rife. It’s not uncommon for people to state ‘clean only’, meaning HIV negative people, suggesting that those of us living with the virus are somehow unclean.

As scary as sharing something as personal as a HIV diagnosis is, none of this will change until people, and especially people in the public eye or in positions of influence, are open about their status without shame.

Act like you are ashamed, and people will think you have something to be ashamed of.

I am not ashamed, I’m Lee!