The virus was once seen as a death sentence. But life has changed for those diagnosed in the UK – and one of the biggest remaining problems is social attitudes

Living with HIV: 'The first question I always get asked is: are you going to die?'

Living with HIV: 'The first question I always get asked is: are you going to die?'

When Claire Horn went for a sexual health check in April 2005, the last thing she expected was to be diagnosed with HIV. She was 22 and studying for a nursing degree in Leeds, and the check was part of the process for having a contraceptive implant placed in her arm. The diagnosis floored her.

“I probably smoked and drank far too much over the next year,” says Horn, who is now 36. “It wasn’t a good time.” She says she knew a little bit more about HIV than the average person but not enough to allay her fears about its impact on her life. “Did I know that the outlook for somebody in the UK with HIV was as positive as it turns out it is? Probably not.”

Horn spent the year that followed learning as much as she could about the condition. She decided not to let it get in the way of leading a normal life, and has, for the most part, succeeded.

Five years after her diagnosis, Horn met the man who would become her husband. They exchanged numbers and, after a few weeks of dating, she knew it was time for the conversation she had been dreading. “I sat him down to tell him that I’ve got HIV and he sat me down to tell me that he was married – although separated – with three kids,” she says. After the conversation, he was “gobsmacked, floored, didn’t know anything about it. He let me talk him through everything.” They carried on dating and, a few years later, they started to discuss the possibility of having children.

Today in the UK, when someone is diagnosed with HIV, they will start taking antiretroviral drugs immediately, to stop the virus replicating in the body. These drugs (usually one to four pills a day) stop HIV from damaging the immune system and reduce the amount of virus in the bloodstream – known as a person’s viral load. When HIV can no longer be measured (a process that normally takes six months), the patient is said to be undetectable – they cannot pass on the virus through sex and can have children without passing on the virus. (Last week, the world’s first sperm bank for HIV-positive donors opened in New Zealand to fight stigma against the virus, with three undetectable men signing up as donors.)

In 2012, when Horn and her husband decided to start trying for a baby, the policy of starting patients on antiretrovirals immediately after diagnosis was yet to be adopted (it became standard practice in 2015). But Horn had met other HIV-positive women who’d had children and knew that safely giving birth was possible. “I pushed the medical staff to start treatment as prevention, even though it wasn’t the norm,” she says. “After a couple of months, I settled on to the antiretrovirals absolutely fine, and I became undetectable. I went on to conceive naturally and have three children that I breastfed, which, again, was not heard of.”

There is little data on the risks of breastfeeding while undetectable. UK clinical guidelines recommend that parents living with HIV should exclusively formula feed, as it eliminates the risk of HIV transmission, although they also state that undetectable women adherent to their treatment who choose to breastfeed should be supported to do so.

Horn says all three of her children have “strong, healthy immune systems supported by breastfeeding”. Not everyone was happy with her decision, however. “My mum was really against it,” Horn says.

“I’m sure some people still think I did the wrong thing. Did I? The bond it gave me and my children, the healthy start in life it gave them, the benefits of breastfeeding over formula feeding – I don’t think I did the wrong thing.”

As for her status, Horn says: “It doesn’t affect me day to day, month to month, week to week, year to year, I take three tablets every day when I go to bed and that’s the end of it.”

In many ways, Horn’s story demonstrates what life should be like today for HIV-positive people in the UK: once on treatment, leading a normal, healthy life is not only possible, but expected.

People living with HIV who are diagnosed in good time can expect the same life expectancy as anyone else

“People living with HIV who are diagnosed in good time and on effective treatment can expect the same life expectancy as anyone else,” says Kat Smithson, director of policy at the National Aids Trust (NAT). “HIV is now a long-term, manageable condition. Quality of life is, of course, complex, but the impact of an HIV diagnosis on this is as likely, if not more likely, to be personal or social rather than related to the health impact of HIV.”

This is because while treatment has progressed, negative attitudes towards HIV are harder to shift; it is still a heavily stigmatised, misunderstood condition. When the former Wales rugby captain Gareth Thomas came out as HIV positive earlier this year, he did so to tackle the taboo and challenge the misconception that people with HIV are “walking around with walking sticks [and] are close to dying”.

But Thomas said his disclosure was also a result of media pressure, after a tabloid journalist revealed his status to his parents. As his experiences demonstrate, in the UK at least, perhaps the biggest issue with HIV isn’t the health impact on individuals, but people’s attitudes.

“I’ve had people – actual mates – who, when I’ve told them, were like: ‘Well, we just don’t want to hang out with someone like you,’” says Stephen, a 33-year old communications officer in Birmingham who was diagnosed with HIV in 2012. As a result of the stigma he has faced since his diagnosis he has asked not to use his full name.

Stephen says he spent a month crying after his diagnosis. He struggled mentally, developing both anger issues and extreme paranoia about passing the virus on – for instance, he was afraid of holding children in case he transmitted HIV to them through cuts (according to Smithson, in this instance as HIV does not survive outside of the body transmission would require sustained blood to blood contact and therefore this is not possible.).

With the help of a counsellor, Stephen has come to terms with it but finds other people’s reactions harder to reconcile. “I am scared to tell people even now,” he says. It’s not surprising: in a 2015 survey into the stigma of HIV, people reported experiencing harassment (9%), gossiping (20%), physical assault (9%) or exclusion from social gatherings (5%).

When I tell someone now I just assume that they’re going to be all right with it

Under the Equality Act 2010 it is illegal to discriminate against a person living with HIV, yet Stephen says that, three years ago, he was subject to a petition to have him removed from his job by a colleague who had found out about his status (the petition was unsuccessful, and the colleague was forced to do a 20-minute training package on diversity). According to Smithson, NAT still encounters many cases of direct discrimination against HIV-positive people.

“When I tell someone now I just assume that they’re going to be all right with it,” says Stephen. “When they’re not, it pushes you sideways.” Dating has proven especially difficult, although he is now in a long-term relationship. The law says it isn’t necessary to tell someone you are HIV positive if you are having protected sex, but Stephen prefers to disclose. Recalling one third date, he says: “I told her and she stood up at the restaurant table and she shouted out: ‘You are disgusting. I can’t believe that you wouldn’t tell me this.’ After having that happen, it gives you a really thick skin.”

When Ibrahim*, a 37-year-old IT engineer based in High Wycombe, received his diagnosis in 2007, he says he wasn’t that worried; as a bisexual man, he was well educated on the condition and knew it wasn’t the death sentence it once was.

“I find that straight people still think it’s a condition that only affects the LGBT community,” he says. “The LGBT community are more educated. There seems to be more awareness of the U=U campaign [undetectable = untransmittable] in the gay community. When I disclose to my close straight friends, one of the first questions I get asked is: ‘Are you going to die?’”

It’s one of the more intrusive, unwelcome questions posed to people living with HIV, the other being how they contracted it in the first place. Even if it’s borne out of innocent curiosity, campaigners say asking this plays into the blame culture and stigma associated with the virus and sexual health more generally: because it can come loaded with the assumption that there are acceptable and unacceptable ways to contract HIV.

Facebook Twitter Pinterest Allan Batcock: ‘If we don’t educate the next generation, we will have a never-ending cycle.’ Photograph: Richard Saker/The Observer

For Allan Batcock, a straight 43-year-old man based in Cheshire, the ignorance around HIV took its toll on his mental health and his social life. When he was diagnosed in 2011, his entire knowledge of HIV consisted of “Freddie Mercury dying and that HIV tombstone advert of the 1980s”. After the diagnosis, he says, he fell to “complete and utter bits”. When he told his then girlfriend, the relationship broke down, while people in his local pub refused to sit with him.

Eight years on, he is in a much better place – healthy, comfortable and happily married – although his status still leaves him feeling lonely (as it does one in five people living with HIV). “I feel very isolated a lot of the time,” says Batcock. “We used to have a HIV group in Cheshire with support groups and there was a drop-in every week and complementary therapies. Well, that’s all gone.” He says it closed as a result of a lack of funding and that there are no similar services available in the county.

According to Smithson, it’s not an uncommon problem, particularly away from cities where access to services is much harder. “We know that people living with HIV are more likely to experience poor mental health compared to the general population,” she says. “And while satisfaction with HIV clinical services is generally very high, there are a lot of unmet needs, particularly around peer support and advice services.”

It was the peer support services that helped Batcock learn about the condition from others and accept his status. “The drop-ins were great,” he says. “Just somewhere where you can have a cup of tea with a group of people who understand. You’ve got people who are newly diagnosed, and people who have been diagnosed for years, all in the same room. And you can see that life goes on.”

The lack of knowledge not only drives stigma and discrimination, but perpetuates the number of transmissions every year. For Batcock, the way forward is obvious. “If we don’t educate the next generation, we’re going to have this never-ending cycle, because they’re not going to use protection,” he says. “I know that when I was that age, I was like: ‘I don’t want to put a condom on. I’m a heterosexual male. It’s only gay people that die of Aids.’ They’re not being taught in school that anybody can get it. And if we don’t educate the youth, what hope have we got of stopping this cycle and trying to end HIV completely?”

* Name has been changed