What can we learn from HIV?

You must be careful when comparing any infectious diseases with others. But when it comes to HIV and monkeypox, there are some clear parallels.

Even recent history with Covid-19 shows us that poorer countries and more marginalized communities are more likely to miss out on drug and prevention efforts. This is also the story of monkey pox.

It has been endemic to Central and West Africa for many years. The first human case can be traced back to the 1970s. But because it is a virus that has mostly affected black bodies, in countries where governments could not afford the drugs – there has been little commercial incentive for research.

This is now changing, the outbreak is also affecting people in rich northern countries of the world, including the UK and US, but similar to the early days of HIV in that it mainly affects gay, bisexual and men who have sex with men, there has been less of a rush to resolve the outbreak, particularly in the UK

And this despite the fact that it has been declared a global health emergency by the World Health Organization. So what can we learn from HIV when it comes to addressing both the epidemic and the stigma surrounding monkeypox?

The parallels between the response to HIV and monkeypox

“I do see parallels with the early AIDS response to what we’re seeing around monkeypox,” says Susan Cole, community outreach manager at the NAM AIDS Map in What The Pox? podcast from QueerAF.

“We’ve seen a lot of negative messages in the media about HIV. And there’s been evidence of monkey pox. But there’s also not been as much interest this time. I think that’s related to the fact that it’s mainly affecting gay men and others men to have sex with men”.

Cole also notes that the lack and mixed messaging is similar to the early response to AIDS. The show examines how this causes a “damaging” impact. The HIV expert also believes it contributes to a stigma. This prevents people from being tested if they have symptoms.

Similarly, he sees similarities in HIV care in the UK to how monkeypox is dealt with. Her treatment and care at her HIV clinic is always “excellent”. But when she visits her doctor or wider health services, understanding around HIV falls apart.

This is something that the smallpox sufferers also noticed on the show. In sexual health settings, health professionals deal with the virus. But beyond these arrangements, there is confusion, panic and alarm.

That’s why the UK Health Safety Authority (UKHSA) released a new set of guidance to all UK health providers just this week.

Lessons from language about HIV that can help in the monkeypox outbreak

HIV experts are always careful to put the person at the center of any language about the virus. Instead of talking about someone who is infected, you will hear experts talking about people living with HIV.

There is a lesson in it about monkey pox. By focusing on the individual, you can reduce the stigma attached to the virus.

“When people call it the ‘gay disease,’ we have to remember, it’s not a crisis,” Matthew Hodson, executive director of the NAM AIDS Map, tells the podcast. “It’s a virus! It has no motivation. All it needs is to survive. And it’ll do whatever it takes to survive, it doesn’t care if its host is gay, straight, or a unicorn.”

Of course, this begs the question – how do you do this while still getting the information to those who need it most? In this current outbreak in the UK it is gay, two men having sex with men.

“The big lesson I learned from working on HIV is that you inform, equip and empower people with information about monkeypox,” says Hodson.

While monkeypox researcher Dr Chloe Orkin also suggests you can talk sexually active LGBTQ people to focus language on those most at risk.

But most of all, it’s about making sure people with lived experience are part of the health message design process. So it matches their experiences.

Tackling health inequalities will solve both HIV and monkeypox

Among scientists, virologists and sexual health experts – there is a large consensus. When you fix health disparities, you can fix and even end all kinds of diseases.

This is why there was much discussion during the Covid pandemic about securing vaccines for countries that could not afford them.

This is why HIV experts are fighting for better access to treatments worldwide. Especially since treatments have become available that can control and even make HIV undetectable.

“If you’re undetectable, you can’t transmit the virus. That’s the stigma-busting news,” says Matthew Hodson of the AIDS map in What The Pox? “It’s also a really strong call to make sure that all people wherever they live in the world, regardless of their income, have access to treatment. Not only will it save their lives, but it will save the HIV pandemic.”

But despite the great progress that has been made around HIV, Hodson says there are warnings from history – that the fight is not over. After all, nearly a quarter of a century after effective treatments were introduced, worldwide, about one in four people with HIV still lack access to treatments.

There is also a real risk that monkeypox will become endemic in even more countries without action. Hodson says countries need to “push the buttons” available to them. This means making vaccines available and the recipes or patents on them.

Quotes in this article have been edited for clarity. What The Pox? is available in podcast apps.