Hepatitis C has an education and awareness problem.
Like the four other most prominent hepatitis viruses (yes, there’s more than A and B), hep C targets the liver—the consequences of which can range in severity from mild illness to serious liver scarring and cancer. But unlike A or B, hep C has no vaccine, and public understanding of the infection is limited.
In the decades since hep C was officially named (prior to 1989 it was known only as “non-A, non-B”), the public health line has remained mostly the same: since most hep C infections are transmitted via blood, the messaging goes, most people contract the virus by sharing needles, syringes or other injection drug equipment. At most, a postscript might be tacked on about avoiding sketchy tattoo parlours where the equipment may not be sanitary.
But today, hep C is a leading cause of liver disease and transplants. More than 30 in 100,000 Canadians and 56 out of 100,000 Americans have hep C. For gay, bi and other men who have sex with men in Canada, that figure balloons to more than 5,000 in 100,000.
In fact, queer men are more likely to be exposed to hep C than HIV, and hep C is more infectious.
“We know a lot about HIV, we talk a lot about HIV—but hep c is not on the radar,” says Dr. Rusty Souleymanov, an assistant professor in the faculty of social work at the University of Manitoba and director of Village Lab.
The reason for that, he says, is that people misunderstand who is at risk of contracting hep C—and how “we need more nuanced conversations about hep C, which can help us design more elegant services and programs.”
When queer guys don’t know about their increased risk, they’re less likely to opt in to testing—which itself is a big problem. “Hep C is a silent disease,” says Mia Biondi, a primary care nurse practitioner and researcher at the Toronto Centre for Liver Disease. “Most people do not have symptoms until they have a very advanced liver disease.”
Perhaps the biggest contributor to queer guys underestimating their sexual health risk to hep C is the decades-long emphasis on needle use as the primary source of transmission, despite small-scale blood exchange that can occur during anal sex.
“The skin in the rectum is a layer or two thinner than vaginal skin,” says Kody Muncaster, co-founder of the PrEPrx Ontario Clinic. “Anal sex almost always creates microtears on the body. You might not see them, but they’re tiny tears with a little bit of bleeding.”
Anal lesions, fissures and hemorrhoids also greatly increase the likelihood of bleeding during anal sex—as do sores or inflammation caused by other sexually transmitted infections like chlamydia or gonorrhea, which queer guys are also more likely to get.
It was the prevalence of queer guys with hep C infections that initially drove researchers and health agencies to recontextualize the virus as sexually transmitted in the early 2000s—a message that hasn’t yet permeated broad queer awareness or, unfortunately, many doctor’s offices.
“When somebody comes in for regular sexual health testing we have this idea that they’re getting checked for everything—but hep C is often not included in that,” says Mat Adams, the harm reduction programs coordinator at Ottawa’s resource for guys into guys, MAX.
Hep C is even left off tests for people using the HIV-prevention tool PrEP (people with PrEP prescriptions are usually required to get tested for sexually transmitted and blood-borne infections every three months). In 2017, the Canadian Medical Association issued guidance calling for the inclusion of hep C on such tests, but no changes were made in routine testing procedures.
“There’s some basic procedural ideas that are really great, but they’re not being followed,” Adams says. That dissonance widens the gap on both sides: queer guys don’t ask for a hep C test, and practitioners don’t offer one unless drug use comes up. “Hep C is being prioritized as mainly something for people who inject drugs.”
Yet even among drug users, misconceptions prevent people from fully assessing their hep C risk. For instance, while needle-sharing is a primary occasion for transmission, it’s not the only one. Smoking with a very hot or cracked pipe could contribute to bleeding gums or lips. Snorting with a shared straw or rolled-up bill is a conduit for a bleeding nose. The emphasis in hep C on injecting only creates a false sense of security.
“There’s a sort of hierarchy for people who use drugs,” says Jonathan Bacon, the interventions coordinator at Montreal’s Clinique médicale l’Actuel. “People who smoke crack will look down on people who inject crack, for example—so a lot of the resources for people who inject drugs aren’t effectively reaching those audiences.”
Drugs and sex overlap in uniquely queer ways as well. Men who have sex with men are 60 percent more likely to use substances while having sex than straight men, according the world’s largest drug survey. This is known as chemsex or “PnP” (party and play), with crystal meth often the drug of choice.
At first glance, fitting these pieces together rationalizes why queer men are significantly more at risk for hep C. As chemsex combines usually condomless, potentially group sex with communal drug use, the opportunities for hep C transmission grow. But those in harm reduction advise against looking at PnP strictly in the context of risk. The fraternity itself may actually be able to provide solutions.
“People who are part of the PnP subculture are very experienced peers who perform a variety of functions, including support, friendship and guidance to other gay guys when it comes to scoring drugs, teaching safe use and troubleshooting in a crisis,” says Souleymanov.
“Crystal meth is such a subcultural phenomenon,” agrees Bacon. “It has its own codes, language, experiences and secrets.” Rather than wait for people who engage in PnP to learn about hep C through substance use services—at which point, Bacon says, there are likely other more pressing concerns to address—we can raise community awareness of the virus through peer-led interventions.
For instance, Bacon works at Clinique médicale l’Actuel with Jean-Sébastien Rousseau, who’s been sober from crystal meth for nearly four years, to connect more authentically with substance users on issues like hep C.
“[As peers], we understand the level of addiction, what’s entailed, the sexual compulsion—that creates a level of comfort and trust,” says Rousseau. “When I suggest a resource or vouch for another professional, they may not love it, but they’ll try it. It creates a safe space and bandwidth for more interventions.”
Beyond investing more in peer-led and community-based hep C outreach, governments—including the Canadian and American governments, which have both committed to eliminate hep C as a public health concern by 2030—can also make testing easier, a priority flagged by the World Health Organization.
Despite several rapid hep C tests being available around the world, only one has been approved for use in Canada. There are no self-tests in Canada either, unlike with HIV. As well, most of the tests used by local outreach groups are paid for by the pharmaceutical companies behind hep C treatments—an unreliable source of funding divorced from other community health needs and goals.
But despite the challenges to reach, educate and test queer communities, there is cause to be optimistic when it comes to the virus.
“[Treatment of] hep C has shifted so much in the last five years—it’s not the same diagnosis,” says Biondi. At one point, the only available hep C treatment yielded only a 50 percent chance at success. Now, new medications have between 95 and 99 percent efficacy, on top of being more affordable and producing results on a shorter timeline.
“It’s much easier for people to start therapy because there are fewer appointments, less blood work, less monitoring—it really has changed the outlook on the disease.”
Muncaster says we should take this positive, affirming tone and apply it to messaging for the community.
“Queer people have been characterized for the past 40 years as being always and only at risk for disease—and that’s definitely not something we need to replicate,” they say. “But what we can do is talk about hep C in our communities more.”