This article first appeared in The Positive Side, a publication of CATIE.
Une version française est disponible ici.
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.
People in rural communities also struggle to find good primary care. About four million Canadians don’t have a family doctor, and the shortage is most extreme in rural areas. And many PHAs find there’s little point being on a waiting list: Overworked general practitioners in smaller towns know little about HIV and many are reticent to add a PHA to their already-full patient rosters. Those PHAs who do have a doctor report a wide range of experiences: Some have doctors who are eager to learn about HIV and keep in close contact with the specialist. Others find that their physicians struggle to figure out where everyday medical care ends and HIV treatments begin — an issue that can strain the relationship with their patients.
Gaining access to other healthcare professionals is also difficult. For three years, Martino searched for a dentist close to home in the Gaspé Peninsula. He got numerous polite brushoffs after revealing his status. Eventually, he found a dentist who agreed to see him. She booked him in the last slot of the day — so she could disinfect her tools with additional care afterward — and still, after the second appointment, she asked him to not return. Martino finally stopped looking locally and went back to a dentist in Montreal — a six-hour drive away — who has experience with HIV.
BUT PHAs IN RURAL CANADA don’t just need healthcare, they need other kinds of assistance as well: help getting to appointments, emotional support, information about treatment and links to other service organizations. In cities, ASOs provide that kind of practical help. But ASOs that serve rural Canada struggle to stretch their budgets to serve their diverse, spread-out clientele. ACNL, for instance, runs on a small staff and a limited budget, trying to serve the huge expanse of both Newfoundland and Labrador. But most of the organization’s information workshops take place in St. John’s. Its rural clients receive mailings and their face-to-face support is largely limited to times when they come to St. John’s for appointments.
While many of these ASOs cannot offer a wide range of services, they focus on the basics, such as driving clients to their appointments. “Mileage is by far and away my greatest expense,” says Elma Plant, a PHA from Blyth, Ontario, and education coordinator at the Huron County HIV/AIDS Network.
It’s not just financial difficulties that leave these ASOs struggling to stay in operation. In 2005–06, researcher Veinot and study principal investigator Roma Harris of the University of Western Ontario conducted a study on how rural Canadians gain support and pass on information about HIV. During the course of the study, two organizations out of the six with whom they collaborated closed down due to lack of funding (larger ASOs took over service in those areas). “We found there was a lot of reliance on central people who acted as hubs of information,” Veinot says. “If they leave or get sick, the entire information network becomes unstable.”
And there are other barriers to getting good care. Lack of broadband infrastructure means some rural Canadians don’t have good Internet connections, reducing their ability to communicate with their support team and get information. As well, government housing programs are few and far between in small communities, leaving low-income PHAs with fewer housing options. And prevention programs offering needle exchanges or free condoms, for instance, are rare outside of cities.
STILL, DESPITE the multilayered challenges of living with this disease in smaller communities, the benefits are compelling enough that many PHAs prefer small-town life — both for personal and practical reasons.
One reason is the affordability of rural life. Martino, for instance, was able to buy a home two years ago, and his mortgage payments are far below the rent he used to pay while living in Montreal — plus, now he has a huge yard.
Family support is another key reason PHAs swear by small-town life. Martino works at his brother’s business and can customize his schedule to work around his health, appointments and volunteer work. And while healthcare is hours away and he often has to rely on the emergency room at a nearby hospital for care, the slower pace of rural life has been much better for his health. In Montreal, Martino worked in a bar, but life in Gaspé is less stressful and it is easier for him to get enough sleep and follow a healthy diet.
The slower pace of his community in Cape Breton fits George’s needs as well. Here, his quieter life affords him more time to spend with friends. And while stigma may exist around him, his friendships are close ones because “people also have more time to get to know you.”
Elma, who was diagnosed along with her husband back in November 1991, finds community support can be powerful. “By January, everyone knew and the doorbell started ringing with people bearing casseroles and pie.” While she admits it might be easier for her as a straight woman, she’s seen little stigma in her community, directed at her personally or her PHA clients. “Given enough education not based on fear, people in rural areas respond with compassion and generosity.”
HELPING TO INCREASE the HIV awareness and acceptance in small-town Canada is the hard work of ASOs. Despite their limited budgets and geographical challenges, these organizations have come up with an ever-growing list of ways to help even their most faraway clients.
Lack of funding and infrastructure means these groups have become increasingly adept at linking up with other organizations. “We network,” says Elma Plant, of the Huron County HIV/AIDS Network. “That’s why we have ‘network’ in our name.” The same tight-knit structure of small-town communities that makes keeping a diagnosis secret difficult helps these organizations stay connected. ASO leaders are well known in the community so they get called on to for instance, speak at events. Plus, newly diagnosed PHAs don’t simply receive a phone number — they get a personalized referral with a name, address and email address.
In Newfoundland, HIV care providers occasionally travel to remote towns to see patients. Not only does this reduce travel for PHAs, but it encourages people who are HIV positive to find peers in their own communities. The ACNL tries to further communication by hosting an annual summer retreat that offers workshops and conversations.
These efforts are making life for those living with HIV in rural communities incrementally better. People in these communities report that they are seeing awareness increase and stigma decrease, and they are also seeing more newly diagnosed PHAs opt to stay put, close to family and friends. This improved environment is helping PHAs. But beyond that, Dalton says, celebrating diversity makes small towns more welcoming and better for all who live there. “Everyone has a piece of them that needs to be supported. That’s what community needs: Community needs everybody.”
Support for PHAs outside Canada’s largest cities
To find an AIDS service organization (ASO) in your area, visit ASO 411 online at www.aso411.ca or contact CATIE at 1-800-263-1638 or www.catie.ca.
This information was provided by CATIE (Canadian AIDS Treatment Information Exchange). For more information, contact CATIE at 1-800-263-1638 or
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