HIV, Hepatitis and Testing: How LGBTQ+ History Month Helps Chart The Future

LGBTQ+ History Month is an opportunity, of course, to look back to the past, and honour what has gone before. It’s also an opportunity, we hope, to think about where progress has been made – and where we still have work to do in the future.

In our own area of work, HIV medicine and public health action, LGBTQ+ History Month is a particularly important time. This is because not just of the suffering undergone by LGBTQ+ people during the early days of HIV – but because of the inspirational work the community did to transform public perceptions, and clinical responses, to the virus. There is much to learn from this under-told story.

In the early days of HIV in the UK, it was gay men who were predominantly affected by the virus. This was purely because it happened first to be ‘introduced’ into the gay population – that is, for coincidental reasons it was among men who have sex with men that the virus first appeared. For this reason, the virus of course first spread within the gay population, the same as in the USA. It was a very different story in other parts of the world, where HIV was initially introduced in the heterosexual community, and therefore spread first among that group.

The problem in the UK and the US, however, was that people began to say, “this is a gay infection.” Stigma evolved around this ignorance: people were vilified for having HIV, they were shamed, they were told it was their own fault. People said you could catch the virus merely from being in the same room as someone who had been infected. If you watch the programme It’s A Sin, that’s a fantastic demonstration of how disgracefully people were treated in the early days.

And in the early days, there was no treatment. Being told you had HIV felt to most like a terminal diagnosis, and the vast majority of people in the early days died. Everyone in the LGBTQ+ community knew people that died, and many went to the funerals of their friends and loved ones. And so in some ways, LGBTQ+ people became activists out of necessity – because they were fighting for new treatments, and for those treatments to be available, and also to say, “This is not just a problem for our community.”

This activism was often unheralded or even attacked. But the perseverance of LGBTQ+ people had real effects: it changed the way doctors and scientists approached the virus, it shifted – little by little – public opinion. And it helped create the in some ways unrecognisably better world that we live in today.

Most notably and positively, the medical treatments for HIV available today are completely different to what was available even in the relatively recent past. Before 1996, treatments were very limited. But after that, we got what is known as “Highly Active Antiretroviral Therapy (HAART)” – a combination of drugs which is capable of driving down the levels of virus in an infected person’s body to undetectable levels. This then allows the immune system to begin to rebuild and fight the opportunistic infections which led to the deaths of millions of people around the world.– It wasn’t long before we started to see people getting better, to the extent that the wards began to empty of people that would have previously almost certainly died with overwhelming life-threatening infections. It was nothing short of a medical miracle.

Today, if you are diagnosed early, you can get onto this effective, life-saving treatment straight away, and it’s likely you will have a normal life expectancy. This is amazing! However, the trouble is that there are still too many people who are diagnosed very late. These individuals can still die – and those that don’t can be left with significant chronic medical problems.

Why is this? Well, again we can look to history to explain why: the stigma that LGBTQ+ have long fought against when it comes to HIV continues to exist today. Members of that community today are – thanks to the pioneering work of their forebears – so much more aware of HIV and therefore tend to get themselves tested more regularly. But other communities don’t still believe that they are at risk.

That stubborn assumption that HIV is for other people to worry about is why people carrying the virus are still presenting very late. In the West Midlands where we are based, nearly forty to fifty per cent of all new diagnoses are diagnosed late – that is, they present to clinicians long after the point when they should already have been on treatment and significant damage has already been inflicted on their immune systems.

If we look at the last three years of new diagnoses in Birmingham where we do much of our work, we see that heterosexuals now outnumber men who have sex with men. And if we also look at the communities that are affected, we have over a third of individuals who are women; we see thirty per cent are white British, twenty per cent are Black African or Caribbean and ten to twenty per cent are Asian. This is a very different picture from those early days.

But we can still learn from LGBTQ+ history. When in the 1980s that community was being silently infected – wilfully forgotten, becoming sicker than they needed to be – they organised to make change. We can do the same today.

Everything starts with testing. We must test more people. Once we’ve tested and diagnosed an individual, we have life-saving treatment which means they will not be able to pass on the virus sexually to their loved ones or sexual partners.

This applies to other blood-borne viruses, too: Hepatitis B and Hepatitis C share transmission routes with HIV: they can all be transmitted sexually, they can all be transmitted from mother to child during pregnancy, and they can all be transmitted from unsterile medical equipment. And because these viruses share common routes of transmission, we should be testing for them all together. If you’re diagnosed with Hepatitis C there is now curative treatment available; if you’re diagnosed with Hepatitis B we can completely suppress this virus as well.

So great treatment is available for all three viruses. But, you can only take advantage of these treatments if you know that you have the infection …?and the only way to know is to get tested. Unfortunately, we are simply not testing enough people.

Where can people get tested? Well, they can attend a sexual health clinic, or simply ask their GP. But many individuals feel too embarrassed to ask, again largely due to the significant stigma still associated with these infections. People also get tested in hospital – but often this can be years too late when much significant or irreversible damage may have already occurred.

It is our strongly held belief that the key to diagnosing more people is to test people on an opt-out basis if they attend A&E.

What do we mean??Well. If you are attending an A&E department and you are having blood tests taken for any reason, these should automatically include a test for these blood-borne viruses. This has to be an opt-out system, just like HIV testing in pregnant women. Why? Because it works! ?98% of all pregnant women are tested for HIV – it has simply become routine. That’s the way it should be: just another routine blood test. In this way, we will diagnose so many more people, and so much earlier, than we do currently.

The fantastic results of this approach are now being realised. In London, Blackpool, Brighton and Manchester, where this approach has been piloted, in the first hundred days doctors have picked up over one hundred new cases of both HIV and Hepatitis C and double that number of Hepatitis B cases. Without this program, these would have been missed. In some clinics in London, A&E is now the number one way that people are diagnosed, outnumbering those diagnosed in sexual health clinics and antenatal clinics combined. Obviously, our current methods of testing are missing large numbers of people.

In LGBTQ+ History Month, we can look to the past for lessons for the future, and we can learn them from the LGBTQ+ people who fought for change. We must challenge stigma, we must fight for widespread testing and treatment, and we must save lives. Together, by changing, we can achieve yet more progress.

Dr Steve Taylor FRCP PhD?@docstevetaylor is a Consultant Physician in Sexual Health and HIV Medicine at Birmingham Heartlands Hospital, clinical lead for the Birmingham Fast Track Cities Initiative and Honorary Reader at the Institute of Applied Health Research, University of Birmingham.

Dan Hartland is the Chief Executive Officer of the Saving Lives Charity.