If they gave out gold stars for sex, Jody Jollimore would have one.
Not for technique or frequency, per se, but for going above and beyond to protect himself and his partners from a range of sexually transmitted and blood borne infections (STBBIs).
“Gonorrhea, chlamydia, syphilis–for years I was getting them,” says the queer health advocate and executive director of the Community-Based Research Centre (CBRC). Now, that’s changed.
His secret? Combining the more well known STBBI preventions—like PrEP for HIV, and the HPV vaccine—with lesser-known, “off-label” treatments: the meningitis vaccine Bexsero to prevent gonorrhea, and the antibiotic doxycycline to prevent syphilis and chlamydia. “It’s the gold star standard for sluts,” Jollimore jokes, but it’s an approach he wants to share.
“Gay guys are once again exploring and leading the prevention efforts way before governments or public health,” he says. “We want to get the word out.”
Is going “off-label” safe?
Both the two-dose Bexsero shot and daily doxycycline pill are routinely prescribed to prevent meningococcal disease and malaria, respectively. Daily doxycycline can be part of the treatment plan for a range of bacteria, helping to deal with everything from infections in the digestive tract to severe acne.
The idea behind using these treatments off-label is that the bacteria causing, say, syphilis or chlamydia are similar enough to the ones these medications were initially meant to address. But like with any drug taken outside its intended use, the efficacy of these methods are still being explored.
Currently, three Canadian trials are underway examining doxycycline as an STBBI prevention tool, all led by queer reserarchers with largely queer participants. Together, they’re trying to close the knowledge gap before singing the praises of off-label preventions, even as preliminary results suggest efficacy.
“In addition to being a gay man, I wear my hat as a researcher,” says Darrell Tan, an infectious diseases physician and lead for the Toronto site of one doxycycline STBBI study. “From that researcher’s perspective, most of us don’t feel like it’s quite ready for prime time yet—there are still some important unanswered questions.”
Chief among questions around a prevention like doxycycline, which involves taking an antibiotic for a long period of time, is resistance—an outcome Tan calls “inevitable.” But rather than be deterred by the likelihood of our bodies or the virus adapting to antibiotics, Tan says it should inspire a research push.
“What we need to better understand is exactly the magnitude of that increase in resistance, and the nature of it.” If the degree or nature of resistance doesn’t warrant concern, doxycycline could still be part of a new suite of STBBI preventions.
The growing STBBI emergency
Much of the momentum created by queer men to research these treatments is due to the rising cases of STBBIs in their own communities.
Take syphilis, for which the rate of cases among queer men has been steadily increasing over the past decade. In British Columbia, syphilis cases have almost doubled in the past five years and, despite a small dip at the start of the COVID-19 pandemic, continue to rise. More than eight in 10 of these cases are among men who have sex with men (MSM).
In the 2019 Sex Now survey, the largest Canadian sampling of queer and trans men’s health, nearly 15 percent of respondents said they had chlamydia or gonorrhea in the past year—a figure 5,000 and 16,000 times greater than for the general population. A comparable situation is playing out south of the border, where MSM are 42 times more likely to test positive for gonorrhea than their straight peers; MSM make up the majority of all syphilis cases in men.
Researchers hope that interventions like Bexsero and doxycycline can help mount a defense against what’s progressively becoming a sexual health emergency for queer men. This is especially important because other prevention methods, like regular testing, are becoming less available in the context of the pandemic as labs pivot away from STBBI testing, and community organizations are having a harder time reaching queer people.
Between 2019 and 2020, the number of queer men getting tested for STBBIs dropped by more than half, according to Sex Now. As the omicron variant continues to dominate, these numbers are unlikely to change.
The problem of STBBIs is pressing, but you wouldn’t guess it based on the government’s response, says Jollimore.
“There was no money attached to the government’s 2019 STBBI Action Plan, and funding elsewhere has stagnated,” he explains. “A lack of funding means that local and community-based organizations who test, treat, educate about and help prevent these infections must do more with less.”
CBRC launched a campaign calling on the federal government to invest more in STBBI prevention, but Jollimore says the community won’t wait around for solutions to come from public institutions. In fact, it never has.
A tradition of grassroots queer health action
“Queer people have often had to use unauthorized, unapproved treatments—and that was especially the case in the context of AIDS and HIV,” says Gary Kinsman, a sociology professor at Laurentian University and longtime activist.
In the 1980s and ’90s, as public health and governments failed to respond to the HIV/AIDS crisis, queer communities mobilized, sometimes in bold, attention-grabbing ways. At one point, activists stormed Ontario’s provincial legislature, handcuffing themselves to ministers’ offices and unfurling banners demanding life-saving HIV medications be covered by the province.
Other grassroots efforts were more subtle. A number of doctors, nurses and other health care workers, frustrated by inadequate action from medical establishments, started working off-the-clock to connect people with care and lead their own research. “Compassion clubs” were formed, where resources could be pooled to buy yet-to-be-approved HIV medications and treatments often smuggled across the U.S. border. Among those smugglers was Kinsman himself. “We responded to them leaving us to die,” he says.
Even decades after these efforts, grassroots movements continued to lead the response to HIV.
In 2016, for instance, Health Canada approved PrEP as a highly-effective tool for HIV prevention. Yet without adding PrEP to public or private drug formularies, out-of-pocket costs approached $1,000 a month.
“It was ridiculous and largely unconscionable to price essential medicines like that,” says Alex Smith, a resident family physician who, back in 2016, was a nurse testing for HIV and other STBBIs at a Vancouver clinic. “We were failing to meet the needs of our patients.”
In response, Smith created the Davie Buyers Club: a virtual tool guiding people through getting PrEP at significantly lower costs from foreign pharmacies.
Named after both Vancouver’s queer neighbourhood Davie Village and the 2013 film Dallas Buyers Club (where a smuggler similarly distributes costly HIV and AIDS medications at lower rates), the platform did what governments and public health institutions failed to do: get PrEP to the people who needed it. PrEP coverage today, though much better, is still uneven across provinces, territories and states.
Though Jollimore, Kinsman and Smith’s stories are tied together in a tradition of grassroot health action, their differences highlight why it can take so long for health solutions to actually help queer people.
For a vaccine or drug to reach us, it goes through many phases which, for the sake of simplicity, can be boiled down to three major stages: research, production and dissemination.
Studies and trials are conducted to determine the efficacy, safety and effects of the treatment (intended or otherwise). That data is used by pharmaceutical companies to manufacture supplies and seek approval from public health agencies. Once approval is granted, treatments are disseminated either by prescription or over-the-counter—sometimes subsidized, sometimes not.
In this marathon process, roadblocks can emerge at every phase. For example, to use Bexsero and doxycycline to prevent STBBIs, more comprehensive research needs to be done. The AIDS medications Kinsman crossed the border with were already evidence-based, but hadn’t been approved in Canada. When the Davie Buyers Club was helping people access PrEP, it was Health Canada approved but remained unaffordable and unsubsidized.
Queer people create grassroots solutions because, when it comes to working within the system, there can be too many challenging questions to answer. Who is funding research for queer sexual health when abstience and condoms are paternalistic alternatives? What incentives do for-profit pharmaceutical companies have to get involved when the queer market is so small? And which political leaders will put their weight behind still stigmatized issues, like sex-positivity and substance use, to approve these treatments and get them covered?
Many in the community have spent their lives answering these questions, pushing at different parts of the health pipeline to benefit fellow queers. Others want to take a simpler approach: blow it all up.
“We’re considered threats by public health,” says Alexander McClelland, an assistant professor at Carleton University who often writes about queer activism and anarchism (McClelland is a frequent Xtra contributor). “In order to survive, people need to break rules.”
Too much of health care, he says, is structured around systems that subjugate queer people. Health Canada has a mandate to protect the public from emerging health threats, but McClelland, Kinsman and other activists argue that the “public” in that vision will always default to the straight, white and middle-class majority.
“They’re not from our community, don’t understand the logic of our community, and they view us as threats to be managed or risks to be controlled, not as people,” says McClelland.
It’s a harsh perspective, but one rooted in historical fact. Homosexuality and gender variance were, until relatively recently, characterized as sicknesses or mental illnesses. Electroshock therapy and lobotomies were still being performed to “cure” queer and trans people in Canada until the 1970s (and state-funded conversion therapy persisted beyond that). When the HIV/AIDS crisis began, similar “them versus us” lines were drawn, contributing to slow research and aid.
While public perceptions of queer people have changed, don’t expect much from those seeking profits or political favour, warns McClelland. “Be always wary of people in power. That’s a mechanism that has never worked for us.”
Just as prisons and policing use surveillance and penalties to control certain communities, so too does public health, he says. “We need to put into question systems that harm queer people, extending the thinking of abolishing and defunding into realms other than prisons and policings.”
Queer mobilization: a necessity, strength and opportunity
The repeated need for queer people to marshal their own health solutions has resulted in a competency for community organizing, the benefits of which are felt outside queer spaces as well.
For instance, AIDS activists were some of the first to learn that sharing injection equipment was contributing to the spread of HIV, and passing on that insight helped protect entire swaths of substance users—gay or straight—from infection. Today, sterile injection kits form the base of harm reduction practices.
Likewise, there are networks and a record of success to build upon—particularly from movements that began during the AIDS crisis. Organizations that helped accelerate medical trials, conducted massive fundraising and created entire grids of testing, treatment and prevention for HIV are, today, more able to do so for other queer health concerns.
These achievements, however, shouldn’t be divorced from a central contributor: privilege. In particular, connected, often wealthy white men who, after testing positive for HIV in the ’80s and ’90s, left their jobs of influence but used the same skills and resources in AIDS organizing.
“If you look at the history of AIDS activism, the people who get the most hero worship are white men who had a massive sense of entitlement,” says McClelland. “They realized the state wouldn’t support them once they had HIV, and all of a sudden their privilege was evacuated, firing them up.”
That truth had echoes across the movement. In 1983, at an early meeting of the AIDS Committee of Toronto (ACT), Kinsman remembers having invited a leader in the Haitian community to speak. At the time, Haitians and other Black Caribbeans were facing as much prejudice and stigma around HIV as queer men.
“I was so ashamed at the racism deployed against this speaker,” says Kinsman, who recalls the speaker being dismissed and berated for not knowing all the right terminology around the illness. “There was a clear racism problem within AIDS organizing, and in the following years we tried to challenge that wherever we could.”
In response, queer people of colour often assembled their own grassroot health solutions. The Black Coalition for AIDS Prevention grew and separated from ACT’s early programming. In the AIDS Activist History Project, speakers of colour reflect on how challenging it was to wrestle media attention and funding from white spokespeople in those earlier days.
But the future holds greater potential to mend those bridges.
“Queer people who have that sense of entitlement and access now need to work closely with more marginalized communities so they can figure out how to work the system to benefit each other,” says McClelland.
To go up against racial prejudice, profit-driven capitalism and lethargic public institutions in a grassroots movement is an insurmountable challenge when taken in at once. But it can also be straightforward if you find a guiding light.
“Be true to your values, do your homework and let the work speak for itself,” says Smith, looking back on his experience creating the Davie Buyers Club.
“Ultimately, it’s important we take care of each other in the best ways we know how. When conventional channels fail, we have to go beyond.”