At a session on queer health at the World-Pride Human Rights Conference this summer, mostly a friendly affair of cross-border discovery and solidarity featuring speakers from Colombia, Kenya and Canada, there was one itchy moment. Joseph Erban, a smoking cessation counsellor in the oncology department of Montreal’s Jewish General Hospital, raised the ire of several people in the packed classroom when he suggested that smoking kills more LGBT people than HIV.
The discussion until that point, like many discussions about queer health, had focused mostly on HIV/AIDS—its effect on how gay blood donors are treated around the world, access to treatment in Kenya, and the link between HIV/AIDS and human rights laws. Erban’s tone struck some as disrespectful of the particular toll HIV/AIDS has taken on the gay community. Even if 36 per cent or more of LGBT people smoke (according to the most recent Toronto study), compared to 16 per cent of the adult Canadian population, doesn’t that tie into the prevalence of depression in the community because of homophobia and issues around HIV/AIDS? One participant pointed out the importance of tobacco in Aboriginal cultures. It seemed like the cancer-causing effects of smoking were expected to take a backseat to other queer concerns. Awareness of cancer among LGBT people, Erban told me after the session, “it’s off the map.”
Yet cancer affects LGBT people as much as the general population. In some cases more. Common social behaviours in the community, like smoking and drinking, increase the risk of other kinds of cancer. HIV-positive people are at higher risk of certain kinds of cancer. As well, a new US study, by Penn Medicine’s Abramson Cancer Center and the National Cancer Institute, suggests that cancer patients with HIV are up to four times less likely to be treated for their tumours, reducing cancer survival rates. The pre-existing relationship many HIV-positive people may have with the healthcare system doesn’t seem to do them much good when it comes to cancer treatment.
“In my clinical experience, I have seen uncertainty surrounding treatment of HIV-infected cancer patients,” states the study’s lead author, Gita Suneja, in a news release. “Patients with HIV have typically been excluded from clinical trials, and, therefore, oncologists do not know if the best available treatments are equally safe and effective in those with HIV. Many oncologists rely on guidelines based on such trials for treatment decision making, and in the absence of guidance, they may elect not to treat HIV-infected cancer patients due to concerns about adverse side effects or poor survival.”
HIV/AIDS prevention messages, and HIV/AIDS treatment issues, loom large in our community. Rightfully so. But have they distracted us from awareness and action around cancer?
“I’ve found that the doctors in our community are more focussed on sexually transmitted diseases. Their time is occupied by that, they’re preoccupied by that,” says David Arnold, a Torontonian who has been HIV-positive for almost 25 years. “Their learning curve is more related to that, and that gets talked about more when you’re with your doctor. It comes ahead of cancer. They don’t mean to do it, but the doctors run out of time.”
Arnold, 52, is also a rectal cancer survivor. His HIV diagnosis, half a lifetime ago, was a surprise that happened suddenly: “I left [the clinic] having no sense of what to do at that moment. I was so alone.” His cancer diagnosis, five years ago, was prolonged, complicated and exhausting, despite his own suspicions that something was wrong. It took almost a year to get the treatment underway. But Arnold figures that his HIV experience made him a better cancer patient, partly because it made him a better self-advocate. “I’ve had practice.”
So when Arnold had the opportunity to become a poster boy for an Ontario campaign encouraging LGBT people to get screened for colon cancer, he jumped at the chance, taking Kate Winslet’s position in a cheeky riff on the Titanic movie poster. “I wanted to be involved somehow.”
The poster, targeting gay men over 50, is part of a larger campaign in Toronto, Ottawa and Hamilton by the Canadian Cancer Society to promote screening for colon, chest and cervical cancers amongst LGBT people. The project, which just wrapped up this spring, was prompted by a study that showed certain communities, including the LGBT community, were being screened for preventable cancers at a much lower rate than everybody else.
For example, bisexual women who are eligible for mammograms get screened at a rate of 40 per cent, compared to 70 per cent for straight women, says Kevin Linn, the health promotion coordinator at the Canadian Cancer Society who shepherded the project.
To build the campaign, the team borrowed from a US program that was first adapted in Canada for Ontario native communities, then South Asian communities. Although the look of the program differs from community to community, the strategy is flexible, using trained peer-group ambassadors, and relevant language and images to get people talking about cancer.
“This is the most awkward conversation you can bring up at a dinner party,” says Linn. “So we’d talk with ambassadors about how to bring up colon-cancer screening, say, when you meet a friend for coffee. It’s not us telling people how to do it, but the community telling us what the community would respond to.” (Of course, this discomfort applies to straight people, too. Only about 20 per cent of Ontarians over 50 get screened for colon cancer; the provincial target is 90 per cent.)
It is possible, you could argue, to target LGBT people at specific venues (public service ads played at the Inside Out LGBT Film Festival this spring, for example) or with a queer “look” (community members on posters and in commercials). But practically speaking, each letter in LGBT has dramatically different cancer risks and obstacles to being screened and accessing treatment. Doctors often neglect giving pap smears to women who don’t have sex with women on the grounds that they’re supposedly not having penetrative sex. Though it’s important for women, cervical cancer isn’t a concern for gay men—except trans gay men. In fact, trans people are regularly left out of conversations about cancer. In addition to frequent misunderstandings by doctors who are not sensitized to trans issues, trans men also face a significant policy barrier when it comes to getting screened for chest cancer: they need an F, not an M, on their health card to qualify.
Unlike HIV, where diagnosis has been simplified to, in some cases, an anonymous test providing results in just a couple of minutes, cancer screening can seem much more intrusive and require so much more communication than merely ticking boxes. Erban says health educators need to borrow the techniques of the tobacco industry, which, historically, has done an effective job of plugging its products. “Everything depends on how you pitch the message,” he says.
But sometimes it feels like it’s not the community that needs to be educated, but the healthcare practitioners who are supposed to be looking out for us.
“I had to educate my doctor. I did a mammogram two years ago, ultrasound. This year, mammogram, ultrasound and colonoscopy. I started doing it 15 years after I should have started doing it. I didn’t know,” says Shoshana Pellman, a 67-year-old trans activist. A skin cancer survivor, she’s also signed up as ambassador with the Canadian Cancer Society project. “Doctors don’t see us as a whole person, just trans. They don’t see other health issues and there’s not always a dialogue.”
Often, it’s having others near and dear to us fight cancer that increases our awareness and desire to take care of ourselves. For example, Arnold’s mother died from cancer when he was in his early 20s.
“I remember how helpless I felt when my mother had cancer and it was so clear she was going to die,” says Arnold. “I would say still today it’s the saddest moment in my life, despite the fact I have a list of over 50 people I knew that died of AIDS. They’re both really profound experiences.”
Obviously, it’s not fair to pit one healthcare issue against another—death and ill-health from HIV and cancer are too awful to be placed in competition. But it is fair to treat ourselves as whole people. And be treated as whole people. Our sex lives affect our mental health, which affects our behaviour around drugs and alcohol, which affects our sex lives, our eating habits and many other risk factors. To pick one killer—AIDS, smoking, breast cancer—above all others is to forget how they interact with each other. And to forget that we are humans, not demographic blips on a chart.