Bay Area Reporter - February 5, 2009
Liz Highleyman

"I thought I was safe," he said at a recent community forum on sex and hep C. "I didn't do IV drugs and I thought I couldn't get it, but I got it anyway."

Organized by an informal group of community members with the assistance of the San Francisco Department of Public Health, the January 27 forum at the LGBT Community Center brought out nearly 150 participants, underlining the growing concern about an emerging new epidemic.

A growing epidemic

Kelly is among a growing number of people - mostly HIV-positive gay men - who appear to have contracted hepatitis C virus (HCV) through sex.

"It's a lot like deja vu all over again," said Dr. Michael Allerton of Kaiser Permanente, "but the big difference is that we have a test and treatment for HCV," unlike the early years of HIV.

About 3.2 million people in the U.S. have chronic hepatitis C, compared to about 1.1 million with HIV. Over time chronic HCV infection can cause liver cirrhosis or cancer, but it often remains asymptomatic for years, and many people do not realize they are infected.

Historically, most hep C cases have been linked to blood transfusions, accidental exposure in health care settings, and sharing needles and other injection drug equipment. Thanks to greater awareness and precautions, the overall number of new HCV infections has fallen dramatically - to about 19,000 cases annually, compared to more than 50,000 for HIV - but the epidemic seems to be expanding among gay and bisexual men.

Starting in 2002, researchers began reporting unusual clusters of acute, or recently acquired, hepatitis C in HIV-positive men who have sex with men, first in London and then in other large European cities. These clusters have since grown to include several hundred men, and genetic analysis of their HCV strains has shown closely related virus among men in common sexual networks.

Dr. Brad Hare of the Positive Health Program at San Francisco General Hospital reported some of the first similar cases in the U.S., starting around 2006. Today, he said, 42 percent of HIV-positive men in his program are coinfected with HCV, with a majority reporting only sexual risk factors.

Allerton reported that 10 percent of HIV-positive patients at Kaiser also have HCV. In an informal survey, Kaiser doctors estimated that 70 percent to 100 percent of these individuals likely contracted HCV through sex, and Kaiser now considers hep C a sexually transmitted disease.

But this view is not yet widely shared. Several speakers and audience members recounted providers who refuse to authorize HCV antibody tests for people who have never injected drugs, and some were even unaware that effective treatment is available.

What's sex got to do with it?

Traditionally - and this is still the position of the Centers for Disease Control and Prevention - experts have maintained that HCV is rarely spread through sex, a claim based on studies of monogamous HIV-negative heterosexual men and women, who have a sexual transmission rate under 5 percent.

But this low figure does not apply to other groups. Most of the recent apparently sexually transmitted cases have occurred among HIV-positive men who have sex with men, but in 2007 researchers in Brighton, U.K., reported a handful of cases among HIV-negative gay men screened at a sexually transmitted disease clinic.

HIV-positive people taking antiretroviral therapy receive regular medical monitoring that can reveal HCV-related liver inflammation at the earliest stages of infection in people with no symptoms. Since HIV-negative people usually don't get regular HCV tests, their rate of acute infection is unknown. Magnet director Steve Gibson said his agency will be teaming up with the DPH to test all HIV-negative clients for HCV.

"I think if we start looking for it, we're going to start finding it," Allerton predicted.

Epidemiological studies of European and American acute hepatitis C clusters have found an association with sex practices including so-called rough sex, fisting, rimming, unprotected anal intercourse, group sex, and sharing sex toys, as well as nasal use of recreational drugs.

HCV is harder to kill than HIV, and can live longer in blood outside the body. Microscopic amounts of blood on surfaces and equipment - including whips, canes, urethral sounds, and needles for play piercing - can potentially spread the virus.

"BDSM involves a lot of potential for blood exposure," said Larry Shockey, who hosts the Hell Hole fisting parties. But if you're not into that, don't assume the warning doesn't apply to you. "Say you consider yourself completely vanilla, but you like shaving scenes. You can get blood on your sheets from a cut. Or if you bite somebody's nipple and it bleeds, and your lips are chafed."

At his events, Shockey strongly encourages gloves for fisting and uses a strong quaternary disinfectant on all play equipment before and after each use.

"I sound like Nancy Reagan, but if someone wants to do something with you that involves [unprotected] blood contact, just say no," said Kelly, after describing his struggles with the notoriously difficult side effects of pegylated interferon and ribavirin hep C treatment. "If I'd have known I could have worn a glove to avoid this, it would have been so worth it!"

Time to get active

Forum participants also raised the issue of hepatitis C advocacy and activism.

"Within the HIV community, we've built a great system of care through advocacy, but that's not the case if you have any other disease," said Ryan Clary of Project Inform. "If you have HCV but are not [HIV] coinfected and are uninsured, you may not be able to access care."

Project Inform is expanding its hepatitis C work at the national, state, and local levels. Nationally, the Hepatitis C Advocates United network is campaigning for increased funding and a comprehensive federal hepatitis C research and prevention program. Locally, District 8 Supervisor Bevan Dufty has called for a Board of Supervisors hearing on the issue.

"We need a sex positive movement. We don't want to follow the HIV example, saying have fewer sex partners, stay home, and jack off," Shockey concluded. "If you're sexually active, get tested for HCV. We need the public health community to help us with testing and treatment so we can protect each other."

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