The new epidemic: HIV and hepatitis C infection in gay men

“I’m surprised there isn’t a greater sense of urgency about this in the community.” Those were the words of Dr Kevin Fenton of the US Centers for Disease Control at the International AIDS Conference in Mexico last year.

He was talking about a Dutch study¹ that showed that more than one in five HIV-positive gay men attending a sexually transmitted infection (STI) clinic in Amsterdam had hepatitis C, compared with only one in 250 negative men. All of them had caught it since 2000, with numbers rising by 50% in the last year.

Hepatitis C infections among gay men with HIV represent a growing epidemic of an STI that, like HIV, is both chronic and potentially fatal.

Of the 40 million people infected worldwide with HIV, about ten million also have hepatitis C.^2,3 In countries where HIV is mainly spread through needles, 70 to 90% of HIV-positive people are co-infected with hepatitis C, compared to fewer than 5% where HIV is mainly spread heterosexually. In countries where gay sex is the main transmission route, about 10% are co-infected. That figure may be about to rise substantially.

Several studies presented at the Conference on Retroviruses and Opportunistic Infections (CROI) this February confirmed these figures and were summarised in last month’s HTU (see “Double Trouble” in issue 184). A Dutch study⁴ confirmed that infection rates were accelerating among HIV-positive gay men at one clinic, with an annual infection rate of one per 75 HIV-positive patients.

Meanwhile a study from New York⁵ suggested that the UK may be one of the focal points for hepatitis C, with an especially high-risk gay subculture. The average time lag between HIV and hepatitis C infection was less than four years in UK patients compared with seven years in the New Yorkers and ten years in those observed in a French study.⁶ UK patients were also a lot riskier in terms of behaviours that could transmit hepatitis C. They were more than twice as likely to be into fisting and unprotected sex and to do these in group situations, and to use a variety of recreational drugs.

Hepatitis C: how do you catch it?

One of the biggest problems with hepatitis C is knowing exactly how it’s transmitted and, therefore, what prevention message to give. It has been seen as an exclusively blood-borne virus, so it was assumed that only sex that was traumatic – that damaged the mucous membranes and exposed people to blood – could allow hepatitis C to be passed on. For this reason practices like fisting and heavy S&M have been chief suspects as the means of transmission, and gay men who aren’t into them may have felt they were safe. But are they?

The French and New York studies did not find that hepatitis C transmission was significantly associated with fisting. It was associated with lots of partners, unprotected anal sex in general, sex toys and – in the words of the New York study - “sex while high”. In contrast, in the original UK study to which the New York study was compared,⁷ men who reported fisting were three to four times more likely to acquire hepatitis C. So while fisting may be amongst the highest-risk sexual practices for hepatitis C, unprotected sex in general, especially with multiple partners, carries a significant risk too.

But why are people with HIV so very much more vulnerable? HTU spoke to infectious disease specialist Janice Main and clinical research fellow Emma Thomson of Imperial College School of Medicine.

“If you have HIV and another viral infection, you tend to have much higher viral loads of the other infection,” says Janice. “People with HIV not only have more hepatitis C virus in their blood, they also have more in their sperm. One study found it in the semen in over a third of HIV-positive men compared with less than a fifth of negative men.”⁸ Having HIV also reduces the ability of the immune system to repel hepatitis C infection and to control its subsequent course.⁹

Having HIV is, however, not enough to explain why positive men are up to 50 times more vulnerable to hepatitis C. Groups of gay men who are having high-risk sex with each other are more likely to meet partners who already have hepatitis C, and to catch STIs that facilitate viral transmission. “The one risk factor that’s universal in studies is unprotected anal sex,” says Thomson, “but I think the amplifier for hepatitis C is serosorting – HIV-positive men picking each other out for unprotected sex - which concentrates groups of high-risk people.”

One study of gay men in Brighton found that positive gay men were 13 times more likely to get hepatitis C than negative men, but did find five cases among negative men too. Four of these subsequently caught HIV.¹⁰ This suggests that there’s nothing in being HIV-negative that specifically protects you against hepatitis C; the higher your behavioural vulnerability to one virus, the higher it is to the other.

Garry Brough knows how he got hepatitis C. The HIV–positive, London-based Health Trainer tested positive in September 2008. “I had a chest infection and throat problems that went on longer than they should, and I went in for full blood tests,” he says. “My liver enzymes were quite high, but I’d had a negative hepatitis C check in July. They thought it might be glandular fever.”

But the result came through positive for hepatitis C. “I realised it must have been in Brazil. I was on holiday there in July and went to Gay Pride in Sao Paulo. There was a party that night. Despite my knowledge of the issues, and being there with a friend who I knew had hepatitis C already, let’s just say I’d just been marching with three million gay people and I was high. There was group sex with other HIV-positive guys and condoms not being used. It was a fantastic night, but a little expensive with hindsight. I felt like an idiot for having contracted [hepatitis C].”

He hadn’t been fisting, and had not had sex with his hepatitis-positive friend. “But if it’s group sex with six, seven, eight people, well, it becomes...more traumatic for the rectal mucosa.” You get sore, in other words.

How does it affect you?

In HIV-negative people, about 15 to 30% of people will spontaneously clear hepatitis C without treatment. In HIV-positive people, that figure is only 5 to 10%.¹¹ The stronger the immune response the body can mount against the virus - and therefore the more severe the initial symptoms may be - the more likely you are to clear it.

If you don’t, hepatitis C causes liver damage faster in people with HIV. As AIDS is to HIV, the severe liver damage called cirrhosis is to hepatitis C. A cirrhotic liver is one where the healthy liver cells have been replaced by so much scar tissue that this resilient organ can’t do its job anymore. This results in numerous life-threatening conditions: liver cancer, internal bleeding, a form of dementia caused by liver waste products poisoning the brain, and so on.

This sounds alarming, but for many people chronic hepatitis C is a slowly progressing infection. Firstly, 70% of HIV-negative people will develop liver damage only very slowly if at all. Of the remainder, only one in five will develop cirrhosis within 20 years of infection - just 6% of everyone who gets infected.

For HIV-positive patients the news is not so good. Cirrhosis develops one-and-a-half to four times faster in co-infected people. In one Spanish study, for instance, 25% of those with HIV had cirrhosis 15 years after infection compared with 6.5% of those who were HIV-negative. ¹²

A 40-year-old HIV-positive gay man used to the ten-year ‘AIDS time bomb’ of untreated HIV infection may feel that a 50/50 chance of cirrhosis at the age of 70 is not too bad. But hepatitis C infection adversely affects the health a long time before your liver gives up.

“In my co-infected patients it’s not their livers I worry about so much as their brains,” says Janice Main. Hepatitis C virus comes from the same family as dengue fever and Japanese encephalitis. These viruses are notorious for causing memory and concentration problems, aches and pains, chronic fatigue and depression. “I see a lot of patients with ME [myalgic encephalomyopathy or ‘chronic fatigue syndrome’]”, says Main, “and my hepatitis C patients, both HIV-negative and positive, look like ME patients.”

In one study, for instance,¹³ HIV-negative patients with hepatitis C experienced muscular and joint pain 90% of the time compared with half of the time for patients with hepatitis B, and fatigue two-thirds of the time compared with 30% of the time. “Add in the concentration, memory and movement problems already known to be associated with HIV and you have a couple of viruses significantly corroding your quality of life.”

How do you treat it?

Fibrosis (damage to the liver short of cirrhosis) can be improved by HIV treatment alone. In one German study,¹⁴ co-infected people on HIV drugs survived for over seven and a half years while those not on therapy survived for just over four.

The state-of-the-art treatment for hepatitis C is a weekly injection of pegylated interferon and a twice-daily oral dose of ribavirin, a drug that amplifies the effect of interferon. According to whether people have HIV and what kind of hepatitis C they have, you have to take this for six to eleven, or even 16, months.

Garry initially decided not to take treatment. “I’m fit, don’t smoke or drink and put myself on a detox diet. I thought, ‘If there’s a chance anyone can clear this by themselves, I’m the man’.” He didn’t, though.

“My impression was that I could afford to wait for treatment because there new drugs in the pipeline coming along quite imminently. I had also just started a new job and had heard nothing but horror stories about the side-effects of treatment.”

“However I talked to the hepatologist [liver specialist], and he explained several things. Firstly, new treatments for hepatitis C are not imminent; secondly, even when they do turn up they will initially replace the ribavirin, but not the interferon; and thirdly, the earlier you get treated, the greater the chance of clearing the virus.” He decided to start treatment and at the time we talked was still taking it.

Hepatologists are cautious about talking about a ‘cure’ for hepatitis C, so they use the term ‘sustained viral response’ (SVR). This means that there is no detectable hepatitis C in your body six months after the end of treatment. In HIV-negative people who take treatment soon after infection (and excluding those who clear the virus spontaneously), 95% of people can expect to achieve an SVR,³ regardless of viral genotype. HIV-positive people have lower success rates. Janice Main achieves about a 70% rate of SVR with her acutely infected patients. Exactly how early treatment needs to be for this kind of success rate is currently being investigated in a study by the St Mary’s team.

Once you get into treating chronic infection, success rates go down, and genotype makes a difference. The largest study of treatment in co-infected people, the APRICOT study,¹⁵ achieved an SVR for more than 60% of patients with genotypes 2 and 3 but less than 30% of patients with genotype 1 - and let’s not forget that these are the majority.

Emma Thomson confirms that it’s largely fear of side-effects that stops people taking the treatment. The chief side-effects are muscular aches and pains, fluey symptoms and depression, due to the interferon, and anaemia and low white blood cell count, caused by the ribavirin. Interferon will also cut your CD4 cell count by an average of 140, so if yours is low, it might not be the time to start. There’s no doubt the side-effects can be severe and difficult to tolerate: in the APRICOT trial, a quarter of patients stopped taking their treatment. But Garry feels some of this fear is misplaced.

“I think the side-effect horror stories are really unhelpful. There’s an incredibly wide range of experiences, from people who have shocking side-effects to ones who have none at all.”

“The biggest thing I noticed was more intense feelings and some problems getting to sleep. I’ve always been the type who cries at movies, but it made me much more emotional. I also felt as if I was coming down with the flu after one of my injections, though only for an afternoon. But on the whole, and speaking only for myself, it’s been very tolerable. As for injecting, I was very nervous about the idea especially as I don’t have much body fat to inject in. But apart from a little bruising I’ve had no mishaps and the needle is so fine you hardly feel it going in.

“At the same time, I’d rather do without any side-effects. I’m due to take 48 weeks of treatment but my hepatitis C viral load came down from 1.3 million to undetectable within eight weeks and I’ve asked my doctor if I can get away with 24 weeks.” The generally accepted guideline in hepatitis treatment is that if you are not undetectable for hepatitis C within twelve weeks, you are highly unlikely to achieve an SVR but there is little consensus about how long treatment needs to be in people with HIV.

There is a huge research programme underway looking at new treatments for hepatitis C and more than 50 candidate drugs are in human trials. We don’t have enough room in this issue to look at future hepatitis C options and will examine them in a forthcoming issue.

Facing up to a new epidemic

The other point about hepatitis C treatment is that, even if a cure is achieved, it does not stop you catching it again. Hepatitis C does not produce a broad, long-lasting immune response and people can be reinfected, infected simultaneously with more than one strain, or superinfected with one strain on top of another – and need more than one course of treatment.

Knowing what public health message to give about hepatitis C to an HIV-educated and probably quite message-resistant group of high-risk gay men is problematic. What campaigns there have been have concentrated on advice such as using gloves for fisting, or avoiding other hepatitis-specific risks such as sharing coke straws, which are assumed to spread hepatitis C through nasal bleeding. However, it is becoming increasingly clear that ‘regular’ unprotected sex, especially sex occurring in group situations, is also a risk factor.

Another risk cited by Garry is the stigma of hepatitis C. “I did decide to disclose my status to partners and discuss it, but a lot of people advised me not to. Many gay men are still very ignorant about hepatitis C and misinformed about risk. I’ve had some nervous reactions from partners but my advice is to treat it the same way as disclosing HIV: if you do it with confidence you’re less likely to get negative reactions.”

A recent study presented at the CHAPS gay men’s prevention conference¹⁶ suggests that being diagnosed with hepatitis C can be a wake-up call and has caused a lot of gay men to reassess their lifestyle and sexuality. Garry has decided to stop the whole group sex/party ‘thing’. “It was something the partner I was seeing when I went to Brazil wanted but I’d already decided it was a behaviour I wanted to change and had done so until we got together. Ironically we split up the day before I got my hepatitis C diagnosis. Talk about bolting the stable door after the horse has gone!”

Support

The Hepatitis C Trust runs two support groups for gay men with hepatitis C in London, one specifically for men co-infected with HIV.

For details of these and other support in the UK contact the Hepatitis C Trust helpline on 0845 223 4424 (10.30 to 4.30) or email helpline@hepctrust.org.uk.