On Friday 5 June 1981, a report from the Centers for Disease Control (CDC) detailed five young, previously healthy men in Los Angeles – all ‘active homosexuals’ – having confirmed pneumocystis pneumonia, also known as PCP.

Nobody knew it then, but this report of the men’s illnesses and deaths marked the beginning of the AIDS crisis. It was a dark day that changed the world forever and well over 30 million lives have now been lost.

The first UK cases were identified in December 1981. Then, the following year, our namesake Terry Higgins became one of the very first people to die of what we now refer to as an AIDS-related illness in London in July 1982. Our charity was quickly established by his partner Rupert and friends to raise much needed awareness among affected communities, fund research to give hope and fight for the proper Government response required to stem the tide of lives lost.  

Initially known as GRID – or Gay Related Immune Deficiency – the CDC first used the term AIDS (Acquired Immune Deficiency Syndrome) in autumn 1982. And, while primarily affecting gay men in the early days, the virus spread rapidly and began affecting some of the world’s most marginalised communities.

It wasn’t until 1986 that HIV (Human Immuno-Deficiency Virus) was used as the name for the virus. In 1987, the UK Government took important but overdue action and launched its Don’t Die of Ignorance campaign to raise awareness of HIV and its spread. But, in the process, the TV advert and leaflet that was delivered to every house in the country, frightened a generation of people and deeply entrenched information about AIDS that is now outdated in the UK. 

It took until 1996 – 15 years and millions of deaths after the CDC report – for effective treatment to be found to protect the immune systems of those who contracted HIV. This would go on to transform health outcomes for people with diagnosed HIV. But the preceding Government inaction, persecution and scaremongering in parts of the press (with reports of a ‘gay plague’), and the shame and stigma for affected communities, cast a long shadow that still impacts efforts to prevent HIV and destigmatise the virus today.

The medical progress in the fight against HIV has been rapid and one of the biggest successes of modern medicine – transforming an HIV diagnosis from a virtual death sentence to a manageable long-term condition. Today in the UK we’re targeting the end of new HIV cases within the decade. That’s because we now have highly effective ways of preventing, testing for and treating HIV. And access to those interventions is a privilege not afforded to many parts of the world still in 2021.

But HIV stigma and discrimination remain a huge barrier to further progress. Public perceptions – in the UK and internationally – have not kept pace with medical progress. Too few know that we can prevent HIV with a daily pill called PrEP, or that we can now say definitively that those taking effective HIV treatment can’t pass it on.

One of the best tools we have for tackling barriers to HIV testing and to improve the lives of those affected by HIV is through education. Through people living with HIV talking about their reality in 2021. Through sharing the facts about HIV. Through raising awareness of how much HIV has changed. Through tackling stigma and discrimination.

We’ve come far in the fight against HIV since the 1980s, but we still have a long way to go.

• Fraser Wilson is Head of Media and PR at Terrence Higgins Trust.