My heart sank.
I’d just put the phone down. A friend’s routine test results had shown up Hepatitis C. Again. The first time was just two years ago. On top of HIV. Now he has to face it all over again, with the added complication of being on HIV therapy. Despite everything, he wanted to get started on HepC treatment as soon as possible. With new treatment, there was a good chance of clearing the virus.
This is probably all too familiar to some readers. Unfortunately. A recent study reported that of gay men in London infected with HepC, a quarter go on to be reinfected, some even for a third time. Most of those are also HIV positive. What’s come to be dubbed ‘chem-sex’ seems to be a common factor, with increasing numbers of gay men experiencing problems with their drug use, some of it related to injecting. But it’s not the full explanation. London may be an epicentre, but it does not represent the whole of the UK, and by far the population with the highest risk are people who inject drugs.
Many cases of HepC infection in gay men have no London or other high prevalence connection, no injecting, sauna or sex club links. In another context, mobility is associated with higher levels of HIV and STIs, with ‘migrants’ (defined as anyone living outside their home country) experiencing greater difficulty accessing services, higher levels of drug use, and loneliness. At closer range, light and occasional drug use or heavier sex doesn’t explain HepC infections. Some people can’t work out how they got it.
Away from the debate around London’s rising rates of HIV and HepC, occasional drug use can turn out to be problematic. An elated feeling, a sense of invulnerability and an illusion of control prepare the ground for HepC. And HIV. Community events in London have started to share information and ways of providing support. David Stuart of Antidote calls for the “brave pursuit of some unattractive truths, and raising awareness of some dangerous Chem-Sex trends that are devastating parts of our gay scene/communities” (Lancet article “New HIV diagnoses in London’s gay men continue to soar”)
Given that Stuart’s experience with Antidote, London’s only specialist gay men’s drug problems service, his voice represents the the needs of gay men with substance misuse problems when he says, “We need to support the sexual health clinics and substance use sectors to do shared, tailored work, and improve targeting and monitoring so empirical data can qualify this anecdotal concern”. The National AIDS Trust’s proposed raft of measures to tackle injecting drug use, only go to show the extensive ground tragically lost or perhaps never gained in drug related HIV and, now, HepC prevention.
London is not representative of the UK, and neither does the city’s gay club scene reflect London itself or gay men generally. We must beware of falling easy prey to moral panic. In our new Puritan era, sex and porn stir public and political outrage. This is a mistake, and it is hypocritical. Overdose deaths, soaring rates of HIV, and reinfection with HepC don’t happen without a hinterland, which we all inhabit. In a plea for balance and perspective, one commentator argues that it is dangerous and irresponsible to blame the rise in HIV on ’gay sex parties’.
One risk of focusing on more extreme and sensationalist drug use is that we ignore important social, pharmacological and individual factors. A second is that it reinforces the ‘otherness’ of HIV and HepC, and in turn, a blaming and shaming culture.
One or more cases of co-infection and re-infection are not the only story. You probably know friends whose relationship teeters forever on the brink because one can’t cope with the other’s drug use. Or it’s on the rocks due to alcohol problems. It really isn’t ‘cool’.
Neither are co-infection and re-infection the full picture. You can read ‘Adam’s story’ on UK positive lad’s blog. Similarly, someone else was contacted by a guy he’d fancied for a while and invited him round. He had a great time. A great time that is, until the HIV meds in the bedside cabinet gave away his secret. He was HIV-positive, and his visitor got nasty about it. No matter that the positive guy’s viral load was undetectable or that he used condoms and had only safe sex. Familiar? What happened afterwards persuades me, if I needed persuasion, that efforts to tackle HIV stigma need to start with gay men themselves. Now there’s the stigma of HepC, if anything, even greater.
Forget anti-stigma campaigns directed to fellow underground passengers and the like. As gay men, we need to know about safe sex, preferably early in the school curriculum, what it’s like to live with HIV or HepC, how it feels to face ‘HIV/HepC whispers’, and to be landed with full responsibility for telling and protecting a sexual partner. In order to tackle problem drug use among gay men, regardless of how prevalent or serious, we must deal with our own hinterland of stigma, ignorance and denial, as well as the challenge of city clubs and parties.
The bad reaction in that particular instance made the start to HepC treatment even more difficult. Think about HIV. Now add HepC, treatment side effects, and the pressure of trying to hold down a job while feeling rotten, and having to slip away for weekly hospital appointments. Mix in the clinic’s messy, unconventional HepC treatment initiation, assumptions about drug use, and poor communication with the HIV clinic. Individual tailored support is a flimsy prospect when your HepC clinic won’t even take blood for a CD4 count or fit appointment times around a patient’s needs. True, this experience may not be typical of HepC clinics but there is no excuse for it anywhere.
A brief observation is that there is a wonderful vocabulary of patient engagement and advocacy around HepC and HIV. It can help if more than words, and if not is mere lip service. Sometimes, it can even be counter-productive.
Staff training and practice must be improved to be about more than the mechanics of handing out medication or even clinical expertise in hepatology. Expertise in co-infection from whichever source, is an essential. Drug problem services must be more flexible to prevent gay men who don’t fit the usual service user profile, having to go from pillar to post. This is my nomination for an equalities agenda closer to home for community and campaigning organisations after equal marriage settles in.
I can only imagine how heart-sinking it must be to catch HepC, especially on top of HIV. But treatment, especially now with the addition of a third HepC drug, gives very real prospect of clearing the virus, even for a second time. New drugs in the pipeline will improve things even more. Strong policy recommendations and increasing awareness and information provision, on HepC and co-infection (eg infohep) will help.
Meantime, we need to reach the undiagnosed, resource and standardise treatment and care, and find out the best way of dealing with what’s on our own door-step. A nascent community response, if supported and not highjacked, is already promising.
(See the latest stats on ‘Hepatitis in the UK’, here)