“I’m surprised there isn’t a greater sense of urgency about this in the community” said Dr Kevin Fenton of the US Centers for Disease Control, speaking at the International AIDS Conference in Mexico in 2008.
He was talking about a study that showed that more than one fifth of HIV-positive gay men attending a STI clinic in Amsterdam had hepatitis C, compared with only one in 250 negative men; numbers had risen by 50% in the last year.
A year later, aidsmap.com reported that Hepatitis C infections (or HCV) among gay men with HIV represent a growing epidemic of an STI that, like HIV, is both chronic and potentially fatal.
Here in Canada, CATIE sounded alarms too. In a 2011 report published in Spring last year zeroing in on MSM (men who have sex with men, a term which includes gay men), they said “effective messaging for communities at risk” was needed and that “service providers needed to be aware of the particular risk of sexual practices in the MSM community that can lead to the transmission of HCV.”
A recent article "Sexual Transmission of Hepatitis C among HIV Positive Men in the U.S. and Australia" in HIVandHepatitis.com reported “nearly three-quarters of new HCV infections among HIV positive gay and bisexual men in the U.S. are likely due to sexual transmission, according to an analysis described in the January 31, 2011 advance online issue of Clinical Infectious Diseases. An Australian study published in the same issue found that "sexual transmission accounted for a majority of cases among men who have sex with men, but injection drug use also played a role. These findings suggest that HIV positive people who have risky sex should undergo regular hepatitis C testing. “
This PositiveLite.com article looks at the community response to the issue of sexual transmission of HVC in gay and bi men in Canada. The picture that emerges is one of poor reporting mechanisms, warnings ignored - and inaction.
The Epidemic in Canada
How is the overall HCV epidemic panning out in Canada? A Hepatitis C surveillance report from the Public Health Agency of Canada (PHAC) covering the period 2005-2010 says that the number of new infections generally in Canada decreased from 13,107 in 2005 to 11,357 in 2009. The report states that the majority of new HCV cases are among people who use injections drugs (61%). Of other transmission routes, it says “sexual transmission of HCV is uncommon in the general population when compared to other modes of transmission. However, it is becoming widely recognized as a growing public health problem among HIV-infected individuals. Co-infection with HIV and other STIs, unprotected sexual intercourse and “HIV serosorting” (i.e., the practice of selecting a sexual partner based on concordant HIV infection status) increase the risk of HCV transmission."
The same report also provides an indication of how many people are infected in Canada. It was estimated that by 2007 a total of 242,521 Canadians were infected with HCV. Almost one quarter of Canadians infected with HCV are unaware they are infected. Importantly, the document does not report HIV co-infections, nor does it report the incidence of HCV in MSM.
Sexual transmission of HVC in MSM
Researchers Tohme and Holberg report that “several longitudinal studies of HIV-infected MSM totaling more than 12,000 person-years of follow-up have shown that these men are at much higher risk for sexually acquired HCV than HIV-uninfected MSM. Likewise, a large cross-sectional study in Amsterdam reported that HIV-infected MSM were almost 43 times more likely to acquire HCV infection than HIV-uninfected."
It went on “The real risk for sexual transmission appeared to be predominantly related to HIV infection: of all the practices considered in this review, the clearest and least equivocal risk behavior was unprotected sex between HIV-infected partners, particularly HIV-positive MSM.”
A French 2006 report warns that “Increase in the incidence of acute HCV infection in recently HIV-infected patients confirms the shift in sexual behaviour in recent years, especially in HIV-infected MSM. Repeated testing for HCV antibodies should be carried out in HCV-negative HIV-infected patients and specific recommendations about protected sex should be clearly provided.”
Clearly the dangers for gay/bi men, and HIV-positive gay/bi men, have been red-flagged for some time. Are there resources for gay/bi men which address this danger?
CATIE, in their Focus On Prevention, Spring 2011 edition has an excellent article “Sexual transmission of hepatitis C: Are HIV-positive gay and bisexual men at risk” which outlines the role of service providers specifically relating to the MSM. Here is what CATIE says. “Service and healthcare providers need to increase HCV testing in men who may be at risk of HCV from sexual transmission. When offering testing for HCV, service providers should also discuss transmission risks and harm reduction strategies. Front-line community workers can play a role in educating and encouraging men living with HIV to test regularly for hepatitis C and other STIs.”
The CATIE article goes on “Numerous studies tell us that a higher proportion of HIV-positive MSM are living with HCV infection than HIV-negative MSM. This suggests that there may be something about HIV-positive MSM that makes them more likely to become infected with HCV. However, it should be noted that not all studies have shown that HIV-positive MSM are at higher risk, so some controversy continues in the medical field.”
Testing for HCV Co-infection in People living with HIV
Why the fuss? Men and women who are living with both HIV and HCV face greater health and social challenges than those who are living with HCV or HIV alone. Each infection makes the other one worse. Those who have acute HCV infection are commonly asymptomatic, which poses a challenge for identifying new cases, other than through testing.
So although HCV is a common and serious co-infection among people living with HIV, it often goes undiagnosed. In a recent large scale study in Florida, researchers found that of a total of 14,291 HIV+ patients studied, only 51% had been tested for HCV. The report highlights the great challenges in identifying and treating HCV with many healthcare providers and adds “there is a great need to educate infectious disease providers on HCV treatment for co-infection.”
That’s a US example, but is this disturbing situation present in Canada? It’s impossible to confirm or deny. There is just no data available on whether the recommended HCV testing of HIV+ patients has in fact happened. So in the absence of Canadian co-infection testing data, the most relevant data seems to be from the US, and also perhaps from the UK.
(I should add that at my Positive Care Clinic, Hep C testing, if not performed annually, now seems to be the norm at least once.)
In the UK, the National AIDS Trust has zeroed in on HIV and HCV co-infection. It’s 2012 report recommends “regular screening for hepatitis C for people with HIV. This should be promoted and encouraged as early diagnosis and treatment has a high response rate.”
The report says of the UK situation “There is an epidemic of hepatitis C among HIV positive gay men. 7% of HIV-positive gay men are co-infected with HCV. Infections are largely due to sexual risk factors, but drug use behaviours may also have a role.”
The UK report states HCV testing is recommended for anyone diagnosed with HIV and also at least annually, since there are immense advantages to being diagnosed with HCV co-infection early.
The UK report makes interesting observations about prevalence in the IDU versus the MSM community. "There is considerable disparity between risk groups. Some 83% of HIV positive injecting drug users are co-infected with HCV, whereas the co-infection rate in HIV positive gay men is 7%. Whilst this is a much lower prevalence rate than amongst HIV positive injecting drug users, given the large numbers of HIV positive gay men there are more co-infected gay men than there are co-infected injecting drug users.
British HIV Association (BHIVA) guidelines also recommend that all patients with HIV should be screened for hepatitis C at the time of their HIV diagnosis, with annual follow-up screening thereafter. More frequent testing is recommended for individuals with a higher risk of hepatitis C infection, including HIV+ gay men with 'risky sexual behaviour'."
A BHIVA audit in 2009/10 found that just 66% of HIV+ patients had an annual HCV test.
The UK report says “Prompt diagnosis of hepatitis C is especially important as the provision of therapy during the first year of infection can yield cure rates of up to 80%. By contrast, the response rate to treatment for chronic HCV is approximately 40%. The prevention and treatment of hepatitis C is a priority for people with HIV. Liver disease caused by hepatitis C is an important cause of death in co-infected patients. Moreover, co-infected patients have a significantly shorter prognosis than HIV positive people who do not have hepatitis “
As to the US situation, a search of the internet reveals a number of community responses to the issue of HCV and gay men's sexual health, such as this one from Project Inform in San Francisco.
CATIE reports “research shows that many of the HIV-positive men who are being diagnosed with hepatitis C have several sexual risk factors in common. These include:
• having unprotected (receptive or insertive) anal sex, especially in groups or with multiple partners
• rougher sex practices, such as anal fisting and the use of sex toys that can damage the rectal mucosa (the delicate lining of the rectum)
• sores, chancres, blisters, lesions or other breaks in the skin due to sexually transmitted infections (STIs, such as syphilis)
• use of recreational drugs during sex”
Of sero-sorting, or poz-on-poz sex, CATIE says “it is not clear if these men are aware of the hepatitis C status of their sex partners. Some researchers argue that social circuits of HIV-positive men that do not use condoms are super-concentrating STIs, which in turn gives rise to hepatitis C outbreaks within these social networks. There is the added complication of HIV causing the HCV viral load to be higher in someone who is co-infected. This further increases the risk of transmitting HCV when two HIV-positive men have sex without condoms.”
The Community Response in the UK
The National AIDS Trust report highlights the response from community groups in the UK. “Valuable campaigns have been targeted at HIV positive gay men to raise awareness of hepatitis C infection and the factors associated with its transmission. In May 2005, Terrence Higgins Trust launched its ‘A, B, C is just the start’ campaign, alerting gay men to the risk of these infections and the steps they could take to protect themselves against it. The campaign highlighted “sharing needles, razors, snorting pipes, unprotected fucking and fisting” as risk factors for infection.
It goes on. “Further work is necessary, such as that already undertaken by THT and GMFA, informing HIV positive gay men of the risks of hepatitis C transmission, with . . . a greater focus on the most significant risks. In addition, complementing this vital health promotion work, HIV clinics need to have clear strategies to minimise hepatitis C transmission (and maximise early hepatitis C diagnosis) amongst their gay HIV positive patients, with consistent testing and counselling processes.
“The failure to prioritise the risk associated with fisting and other sexual activities likely to involve trauma and contact with blood may mean that men are not being sufficiently alerted to what is consistently emerging as a highly important risk factor.”
It also says “Research attention could profitably be devoted to the personal strategies HIV positive gay men are adopting to protect themselves from hepatitis C infection. If anecdotal reports that some individuals are relying on their sexual partners to disclose their infection status prove founded, then there is a clear need for well-focused and targeted information highlighting the unreliability of this strategy.”
The Community Response in Canada
In a word, it’s underwhelming.
There appears to be no data for HCV testing uptake amongst HIV+ patients in Canada. That lack of data cannot be used to assume or even suggest we do not have a problem, when other countries with better research and/or data collection do.
As for programming, it’s clear we as a country are lacking too. Where are the HCV campaigns aimed specifically at MSM that all the literature, including our own, recommends?
Enquiries of the prevention community suggest that in some, the issue is “more than on their radar”: but that funding constraints combined with inadequate surveillance reporting have hindered implementation to date. But lack of awareness generally is likely equally as important.
There are exceptions. In BC, Heath Initiative for Men (HiM) has had several columns that contain information about HCV aimed at MSM and poz guys, like this one and this one.
In a nutshell, we need do to more towards bridging the gaps between recommendations and practice.
The response in Canada, provincially and locally, has been stymied by lack of data as to the extent if the problem. Data drives action; without it there is often none.
We know much too little about the extent of HCV infection in MSM, or co-infection in that group, or to what extent recommended testing is actually happening. PHAC says this: “better estimates of HCV trends in Canada, including measures of prevalence and incidence of acute hepatitis C, and more detailed data about risk behaviours, would help inform HCV policy by targeting prevention programs toward those at greatest risk for infection.” They are right of course. But research is also needed too, to find out what doctors are doing about HCV testing in their HIV+ patients.
So again, here are the problems
- The lack of data as to the extent of both HCV infection and co-infection in MSM. Without data there is inaction.
- The lack of data on uptake of HCV testing in people with HIV in Canada, whereas elsewhere testing rates are clearly a problem, which lack contributes to potentiailly poorer health outcomes for people living with HIV
- Lack of awareness in health service providers of the issue surrounding risk factors associated with sexual transmission of HCV in MSM.
- The lack of HCV programming targeted at MSM recommended by many countries, including Canada
What can you as a person living with HIV do?
Read up on it, particularly if you are a man who has sex with men. Read the CATIE article as a first step. Then start asking questions.
Ask your HIV doctor or clinic what is their policy regarding HCV testing? Find out if you were tested on diagnosis and/or annually thereafter. If the answer is no, ask to be tested.
Ask your ASO to see their pamphlets or online material about HCV infection in MSM. Ask your counsellor/support worker to tell you what he/she knows.
Complain if you are not getting satisfactory answers, or see inaction on this issue. Talk to others. Raise the issue at HIV conferences and meetings of other people living with HIV.
Advocate for better research. Gay men are underserved here, and this is an example.
Advocate for better health care relating to this issue in general. The health care agenda has often been moved forward by people living with HIV themselves. This is a prime example where we can do that, by pointing out the gaps between recommendations and practice and asking that they be addressed.