“Prevention fatigue” causes increase of HIV diagnoses among older gay men in UK
Minimizing HIV infection rates is often discussed in relation to younger gay men only: guys who haven’t grown up with any memory of the early HIV epidemic.
However, the reasons why people become HIV positive are many and varied. And it cuts across age barriers.
In the UK, the over-50s are the fastest growing group of people living with HIV. Many are gay men who were diagnosed when younger but are now living long, healthy lives thanks to antiretroviral treatment.
However, others are acquiring HIV when older. Sometimes after many years of practicing safer sex.
New diagnoses among older people have nearly doubled in the last decade. In 2015, there were 1,018 new diagnoses of HIV in people aged 50 and older in the UK, compared to 667 in 2006.
What is causing this?
Sexual health campaigners have identified ‘prevention fatigue’ as a factor. This is when gay men, who have been listening to safer sex messages for decades begin to stop listening.
Years of remaining HIV negative can sometimes lead people to think they can allow themselves to indulge in risk-taking behavior.
‘Prevention fatigue can be a major issue,’ agrees Ian Howley, interim CEO of gay men’s health charity GMFA.
‘Lots of gay men who grew up in the 80’s and 90’s who managed not to contract the virus have grown tired of constantly having sexual health messages thrown at them.
‘It creates a barrier where these men tend to ignore new prevention methods, such as PrEP.’
‘As I got older I began to think of myself as a bit invincible’
Bernie McDade is 66 and was diagnosed with HIV two years ago. He says it was for the first time he’d been tested in 14 years.
An Australian who has lived in London for the past 12 years, he has been openly gay for most of his life and is happy to talk candidly about his sex life.
He tells me that his approach to condom use was haphazard; ‘I occasionally would and I occasionally wouldn’t,’ he admits.
‘Yes, in the 80s, I used condoms more, when all the deaths were happening. Having managed to avoid getting it, as I got older I began to think of myself as a bit invincible. I became a bit more reckless and daredevil in my attitude,’ he readily concedes.
McDade says he ‘played around a bit’ after splitting from his previous long-term partner. When diagnosed, he took the news with relative calm.
‘I felt quite resigned. I did a course for the newly-diagnosed, and I was probably the calmest in the group, but I was probably also the oldest in the group. The young ones were much more emotional about it. I perhaps took it in my stride more.
‘I was quite ignorant about the medication we have now. What we have now are miracle drugs. I’m undetectable and can’t pass the virus on, which for someone who lived through the 80s, who saw a lot of his friends die, is pretty miraculous.’
‘There is still stigma in the gay community and society in general about people with HIV’
McDade says his health is currently ‘excellent’, other than the normal ageing issues that anyone of 66 might face. If anything, his regular HIV-related check-ups ensure that any problems – HIV-related or not – are detected early.
Despite this, he’s says he would much prefer to not have HIV. Not because taking daily medication is a hassle (he was already on daily pills for his blood pressure) but because ignorance around the condition persists.
‘There is still stigma in the gay community and stigma in society in general about people with HIV. They don’t understand it. I’m fortunate that my friends and family are educated, so I’m very open with them all about it.’
‘Also, we still don’t know the long term effects of these drugs on us. I mean, I’ve had my life, but that can be more of a concern for younger people.’
‘It can be difficult to go back to condoms after a long time away’
Howley points to other factors beside prevention fatigue.
‘Loneliness and isolation can also play a factor as a reason why older gay and bisexual men are becoming HIV-positive.
‘Other reasons can include the break down of a long term relationship – lots of gay and bisexual men don’t use condoms while being in a long term relationship. It can be difficult to go back to condoms after a long time away.’
He views are echoed by Adrian Beaumont, coordinator for Terrence Higgins Trust’s ‘Health, Wealth and Happiness’ project for over 50s living with HIV.
‘Older people may find themselves newly single, following a divorce, break-up or bereavement in later life, having not thought about HIV prevention for a long time, and so messages about condom use and regular testing may not be reaching this group of sexually active people.’
Being in a relationship can also lead people into thinking there’s no need to have a regular STI check-up.
‘We didn’t test because we thought we were fine’
Roland Chesters is now 57. He was diagnosed ten years ago, after a prolonged period of chronic illness.
He says he never thought about HIV because he’d been with his partner for ten years and they were monogamous. Consequently, when he was diagnosed with HIV, he was devastated.
He believes he became infected through a previous relationship.
‘Going on how low my CD4 count was, the specialist told me that it was likely that I had been infected around 15 years earlier, and slowly progressing over that time. When I thought back, I had had some minor health issues back then, so it adds up.’
‘I met my current partner at 37. We decided not to use condoms as we were both confident that we were OK and that we were monogamous. We didn’t test because we thought we were fine.’
His partner has remained HIV negative. Chester’s story is a striking example of why sexual health advocates advise all gay men to have an annual sexual health check-up, regardless of whether they have symptoms or are in a relationship.
It also illustrates the fact that symptoms can sometime be assumed to be due to other factors.
‘Some early symptoms of HIV may appear to be signs of normal ageing’
‘We’re facing the first generation of people to grow old with HIV,’ says Beaumont, ‘So we are still building an understanding of what the virus looks like in older age. Some early symptoms of HIV may appear to be signs of normal ageing, for example – so this could mean it is less likely to be spotted and diagnosed early.’
After his own diagnosis, Chesters says he at first felt some relief at finally finding out what had been causing his health problems, but that this was accompanied by ‘fear, despair and anger. Anger at myself and anger at the world.’
Howley says, ‘HIV is a major issue for all ages and we need to make sure that our prevention messages reach all those who need it. This includes older gay and bisexual men.
‘In an era where social media and online advertising outweighs traditional methods, it can be difficult to reach these men who need information, support and advice. However these men are not on Snapchat, Instagram and probably not looking at cat videos on YouTube.
‘We need to be more creative in how we reach older gay and bisexual men, with information about testing, PEP, PrEP along with condom use – information that works for them.’
And the message to deliver?
‘I work a lot with gay men now, and everyone’s story is unique and different,’ says Chester, who took a career change following his diagnosis and now works as a trainer and life coach.
‘From my own perspective, my life has changed substantially and dramatically as a result of being HIV. Psychology and emotionally, the impact has been huge.
‘That said, it has given my life a direction that was maybe lacking beforehand. It has given me a drive and ambition and energy to achieve something’
‘Nothing is black and white. I would never advocate someone to become positive, but it also depends a lot on your mental attitude and the mental attitude of those around you. And I’m lucky because my partner stayed with me. He has been my rock.’
However, like McDade, he says that he has experienced stigma around HIV, which he says continues to be ‘huge’.
McDade message remains unequivocal: ‘It’s better not to have it than have it.’