Why is the UK HIV epidemic ‘straighter’ than the US epidemic? Advocates explain

Late last year, United Kingdom health officials released data that raised eyebrows worldwide: In 2020, more heterosexuals (49%) than gay or bisexual men (45%) were diagnosed with HIV—the first time in a decade that the percentage was higher among straights than gays.

The news was eyebrow-raising particularly in the U.S. because, here, gay and bisexual men make up about 63% of all people living with HIV, as well as about 70% of those newly diagnosed with HIV in recent years. But in the UK, the percentage of people who acquired HIV through sex reported as “male to male” (by which they generally mean penis to anus) is about the same as those who got it through heterosexual sex.

There’s one baseline reason why this is the case: The UK has a relatively high percentage of heterosexual emigres from Africa who got HIV in their home country before coming to the UK, according to the new data.

Another reason is rooted in the UK’s far better overall track record in addressing their HIV epidemic than that of the U.S. Currently, in the UK, of the roughly 100,000 people living with HIV, 94% of them are diagnosed, 98% of those are on treatment, and 97% of those have an undetectable viral load and therefore can’t pass on the virus sexually. Compare that with the U.S., where, among the roughly 1.2 million people living with HIV, about 87% are diagnosed, 66% have had some care, only half are retained in care, and only about 57% are undetectable.

These disparities are largely attributable to the fact that the UK has a universal national health system while the U.S. has a crazy patchwork of wildly varying levels of coverage from state to state, including coverage within the federally funded AIDS Drug Assistance Program (ADAP) network. The UK’s excellent undetectability rates also mean that few gay and bisexual men with HIV are passing it on.

Then there’s PrEP, the HIV prevention drug, which gay and bisexual men in the UK took up in huge numbers in recent years via massive trials that led to its full availability last year. Combine the power of U=U (undetectable equals untransmittable) and PrEP among UK gays and you can understand why that community has experienced a dramatic 71% drop in HIV diagnoses since 2014.

At that rate, say researchers, new HIV infections among gay and bisexual men will likely become rare by 2030.

Those projections were reported by Gus Cairns of the longtime UK HIV information group NAM Aidsmap. The steep diagnosis drop in gay and bisexual men, Cairns tells TheBody, “is probably because gay men test more often, so we mainly pick up new infections in them and fewer chronic, long-term, undiagnosed ones”—the kind of infections that are more prevalent in UK heterosexuals, who don’t test as frequently.

“Then,” continues Cairns, “new infections among gay/bi men become even rarer because gay men get on treatment earlier, so they aren’t infectious. Plus, many more take PrEP [than heterosexuals].”

However, in the UK, as in the U.S., it’s still far more common for white gay and bisexual men to go on PrEP than those of color—and HIV infection rates have dropped much more steeply (in both the UK and U.S.) among white gay and bisexual men than those of color, especially Black men. Of the more than 24,000 people who accessed PrEP in the UK via the IMPACT trials of 2017 to 2020, almost all of them were gay and bisexual men. Only 3% of all participants were women, and only 1.5% of all participants identified as Black African.

Bias and Racism Fuel the UK’s Straight-Leaning HIV Epidemic

Susan Cole, Cairns’ colleague at NAM who is a Black woman living with HIV, says that much more widespread and routine testing of heterosexuals—particularly those who are Black African—is needed in the UK to bring down HIV rates in that population as steeply as they have been dropping among gay and bisexual men (even though it should be noted that there has been a downward trend among heteros as well, just not as sharp).

“Right now,” she tells TheBody, “most HIV testing in the UK occurs in sexual health services (SHS) centers, which gay and bi men attend more regularly. With heterosexuals, there may be stigma associated with going to an SHS, so it’s up to your primary care provider, who may not think to test you.” Many women in the UK, she adds, find out they have HIV during pregnancy, when HIV testing is routine, as it is in the U.S.

Institutional racism plays a role, too, she says. True, the UK’s health system is open to all citizens and legal residents—and HIV care is available for undocumented residents, as part of a public health prevention plan. “And there are many great providers within the system,” she says. “But there is still a lack of trust in the system among some people of color.”

And often, she says, that’s justified. “I’ve had women with HIV tell me that their providers don’t believe them when they complain about pain or side effects from their HIV meds, which can lead to them simply dropping out of care.” She notes a recent study finding that 45% of women living with HIV—especially those with long-term HIV—reported moderate pain during menopause, with 9% of them reporting extreme pain.

But UK health officials reported that heterosexual women, both Black and non-Black, were the most likely groups to decline an HIV test even when offered. “That could be because they don’t perceive they’re at risk,” says Cole. “It could be that they don’t know you can live with HIV, because they remember people in their home countries in Africa dying from it, so why bother getting tested? It could also be because they’re afraid of bringing that news home to their male partners for fear of anger or violence.”

Cole is currently working on a series of social media–ready videos in which Black women with HIV tell their story in order to encourage more such women to be tested.

The UK’s Gay/Straight PrEP Divide

In addition to not enough HIV testing among heterosexuals, too few are being told about or going on PrEP, especially women. And as with HIV testing, that’s because PrEP is currently only offered out of SHS centers—which are far more commonly visited by gay and bi men—and not via primary care providers, where most women go. That’s according to Sophie Strachan, CEO of Sophia Forum, which advocates in the UK for HIV prevention and treatment among women.

Strachan says that PrEP in the UK for women needs to be reframed as an upbeat lifestyle choice, as it has for gay and bi men. When working groups started talking about how to promote the PrEP IMPACT trials a few years ago, she says, “women weren’t even being considered in the PrEP discussion. And when they were, they were framed as these helpless victims of domestic abuse and violence.”

Granted, there is a link between domestic violence and HIV, she says, but still, “for men, PrEP was framed as liberating and empowering. We’re about two years behind promotion of PrEP for women.”

Key to this, she says, is that primary care providers need to be trained to get over their discomfort and biases related to talking about HIV with women patients and to routinize offering PrEP. “It’s not about telling women that they have to take it,” she says, “but that it’s an option.” The country’s new HIV Action Plan, she notes, is prioritizing this in the years ahead.

A Bright Picture Overall

UK advocates say that despite sharper HIV downturns in gay and bisexual men than heterosexuals at the moment, the picture still looks bright for the entire country to effectively end its HIV epidemic by 2025, as is the plan.

“This is a success story for all populations,” says Cairns. “Nobody is dropping the ball here.”

“We’ll definitely need more testing and PrEP uptake among heterosexuals,” says Cole, “but I think we’ll get there by 2025, because overall our numbers are really good.”

She adds that, as a woman living with HIV who was diagnosed in rural Louisiana in the late ’90s when she was with an American husband, she is glad to be living in the UK rather than the U.S. “We have a national, universal health system,” she says, “which makes all the difference.”

By Tim Murphy