HIV in Canada Is Often Seen as an Urban Issue, but That's Far From the Whole Picture; Diane Peters Talks With People About the Challenges and Benefits of Living With HIV Outside the Big City
It was something you could probably only get away with at a house party in a small town: drinking directly from a wine bottle and alternating swigs with a young woman you just met. That was what 23-year-old George from Louisbourg, Cape Breton, was doing at a recent party -- and having a blast.
The new buddies were getting cheerfully drunk when a couple pulled the young woman aside and told her that George was HIV positive and she probably had contracted the disease from sharing that wine bottle. She began screaming and crying.
"You don't have anything to worry about! You have to drink 12 gallons of my saliva to have to worry about it," George told her. (He was pulling numbers out of the air, but he was correct that the amount of HIV in saliva is so low that it's considered impossible to transmit the virus this way.)
Soon, the young woman calmed down and apologized. But the whole incident reinforced for George something he already knew: It's a huge challenge to live with HIV in small-town Canada. Studies show that rural Canadians have very poor knowledge of the disease. Stigma -- and fear of it -- has led to silence around the condition in many communities. Meanwhile, people with HIV/AIDS (PHAs) struggle to get timely access to medical care and support service. "There are a lot of challenges for people with HIV and those trying to respond to it in rural areas," says Tiffany Veinot, a Canadian researcher on HIV awareness in rural communities who is now an assistant professor with the Schools of Information and Public Health at the University of Michigan.
"But it's not all bad news," she adds. There are significant benefits to living outside of cities for PHAs, including lower cost of living, family support and service organizations that are constantly improving outreach. We're not there yet, but HIV may one day be a disease that's understood across the country.
About 65,000 Canadians live with HIV, but no one collects information on how many of them reside outside of cities. Up until recently, the disease has been looked at by researchers as an urban phenomenon. Now, there's a growing interest to study HIV in small towns and to document, among other things, education levels about the disease.
"The biggest problem is ignorance," George says. "Many people only know what they hear from their friends." George's experiences are backed up by facts: A study recently published in the Journal of Rural Health showed that among a surveyed group of 1,177 rural Canadians, nearly 25 percent thought the disease was transmitted through casual contact. In contrast, just 19 percent of urban dwellers believed the same misinformation. Lead author Veinot still marvels that her study revealed that one in four rural residents thought you could get HIV by sharing a glass.
Veinot partly attributes this ignorance to the fact that few people in small towns talk about HIV -- her study found that rural dwellers were much less likely to have discussed HIV with anyone. "A lot of people with HIV that I've spoken to, as well as their family members and friends, tell me there was a lot of silence about the disease in their community."
The characteristics of rural populations, Veinot adds, make it more likely that they will have health knowledge that is less current: Poverty rates are higher, people are less likely to be university educated and the population tends to be older. "We have a lot of people in our area who are 55-plus," says Martino Larue, a PHA living in Price, Quebec, on the Gaspé Peninsula. "They're still stuck back in the 1980s. The new generation here knows a lot more about HIV; they read about it on the Internet."
Religion can also have an impact on HIV knowledge: While some rural Canadians have seen certain churches become very supportive after a member's diagnosis, other congregations contribute to the knowledge gap by refusing to talk about HIV. John Baker, outreach coordinator for the AIDS Committee of Newfoundland and Labrador (ACNL), sees this when he tries to book speaking engagements at rural schools. "I often get schools that aren't very welcoming, that just don't have time for me. These are often schools in tightly knit communities, where what I have to say is deemed inappropriate or not needed in the community. It's a NIMBY [not-in-my-backyard] mentality."
Many communities are simply in denial that HIV -- along with the activities that pass the virus, such as high-risk sex or injection drug use with shared equipment -- exists in their midst. "There's a real invisibility cloak around certain issues in this community," says Gary Dalton, of the AIDS Network Kootenay Outreach and Support Society (ANKORS), in the group's Cranbrook, BC office.
While rural Canadians don't talk about the illness itself, neighbours still quickly spread news of a diagnosis. When Martino got his test results in 1997, he was with his cousin. "I'm going to wait a few months before I tell anyone," Martino told her. But back in their town of just 1,100, Martino's cousin was so upset that she confided in her father. Within days, everyone in the area knew.
Knowing how word spreads in small communities, many PHAs guard their status with extreme care. In rural Newfoundland, where medications are often delivered by mail, Karen Thompson of ACNL has heard of PHAs sending a friend or family member to the post office to pick up the package, simply so others won't see them doing it. PHAs in small-town Ontario, meanwhile, will visit walk-in clinics or drug stores in faraway towns just to avoid seeing someone they know. "There's a real or at least perceived lack of privacy," says Jenny Gritke, HIV regional resource coordinator for the Regional HIV/AIDS Connection in London, Ontario, which serves not just the city but six adjacent, mostly rural counties.
Caution about disclosure, for small towners, is all about guarding against stigma. "It's not safe to say in public that you're HIV positive around here," says ANKORS' Dalton, who's seen newly diagnosed PHAs beaten up and fired from their jobs. After about 20 people became infected in the Newfoundland region of Conception Bay North in the early 1990s, stigma became a huge issue for not just those living with the virus but also many others in the area. For instance, young hockey players from the area struggled to find families that would billet them when they travelled for tournaments -- and none of these kids was HIV positive.
Stacey, a PHA now living in Sarnia, Ontario, was diagnosed in 2008 while living in her hometown of Alcona, a small Ontario town outside of Barrie. When news got around, a woman who knew the man who had infected Stacey showed up at her door throwing punches -- she said Stacey had driven him out of town, as he had recently moved. One of her daughter's classmates was pulled out of school (to avoid contact with Stacey's daughter). Within months, the negativity in town was so overwhelming that Stacey moved.
Along with these social obstacles, small-town PHAs face practical challenges. Getting high-quality medical care, and getting it promptly, remains a serious concern. Because HIV specialists typically work out of major centres, the vast majority of rural PHAs must travel to get care. For Dalton's clients in BC's Interior, that means a 13-hour bus ride to Vancouver -- "not an easy trip," he says. Not only is the ride exhausting, but it's pricey and requires an overnight stay. In the winter, long commutes to the doctor can be made worse -- or impossible -- by the weather. Some PHAs don't own cars, so that means relying on family, friends or AIDS service organizations (ASOs) simply to get to an appointment. Seemingly minor policies on the part of clinics, such as not allowing medical information to be sent via e-mail, can further affect the care and support that a rural PHA receives.
This article was provided by Canadian AIDS Treatment Information Exchange. It is a part of the publication The Positive Side. Visit CATIE's Web site to find out more about their activities, publications and services.
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