This article first appeared in The Positive Side, a publication of CATIE. 

Une version française est disponible ici. 

MY NAME is Mashkiki-waabika-inini (Medicine Circle of Stones Man); my given name is Ron Horsefall. I am from Pasqua First Nation, Saskatchewan. I am 45 years old and currently reside in Vancouver, BC. The first time I was tested for HIV was December 1996 and I was diagnosed with AIDS. At the time I was living in a room in a single-occupancy hotel in the Downtown Eastside of Vancouver. I had shingles, which was what prompted me to get tested.

After my diagnosis, I was put on HIV meds; AZT was one of them. For about four years, I was on and off meds: The times when I was not drinking were the times I was able to take the meds. My health finally made a turn for the better when I sobered up in 2000. Now my health is good: I’m on therapy, my viral load is undetectable and my CD4 count is 400.

I am a survivor of a residential school. I started attending when I was five years old and I was abused before and while at the school. After leaving, I wanted to distance myself from everything that had happened there and I discovered the best way to do that was to use drugs and alcohol. My addictions led me to ugly places and to a life of high-risk behaviour. I just didn’t care about myself and, more fundamentally, I didn’t love myself.

Bottoming out

In retrospect, I see HIV as a gift — it helped me hit bottom. Trying to manage my addictions and my health at the same time was not working. So I had a decision to make: Get sober and live or keep using and die. After 23 years of drinking and drugging, I reached out. I joined Alcoholics Anonymous, found a drug and alcohol counsellor and eventually saw a psychologist. These were the hardest things I had ever done up to that point.

HIV and the drug and alcohol use were symptoms of more deep-seated problems in my life. Under the surface were some very serious issues — issues that I’ve had to deal with over the years. Addressing them meant turning inward to look at myself and my life and putting away the blame and self-pity I was feeling. I became aware of why I used and why I became HIV positive. It is a very hard road to walk, and I didn’t walk it alone; I had help from a great many people. It was the journey from my head to my heart.

Eventually, doing my own inner work and practicing a healthier lifestyle brought me to a place in my life where I could give back what had been so freely given to me. From 2004 to 2007, I worked with two Aboriginal AIDS service organizations: Healing Our Spirit here in Vancouver and All Nations Hope AIDS Network in Regina, Saskatchewan. I spoke publicly about my life with HIV — something I still do on occasion — and developed workshops for Aboriginal people with HIV. It gave me joy to help people on their own journeys, whether they were HIV positive or not.

The residential school system disconnected me from my culture and spirituality. I knew I was First Nation; however, I didn’t know what that meant. As part of my healing, I embarked on another journey, this time to reclaim my culture and spirituality — my birthright. As I learned about my identity, I became interested in powwow dancing. I decided to make my own regalia (dance outfit) and this required beadwork. Thus began my artistry with beads. I am a self-taught bead worker — I learn from books, videos and the Internet.

Phoenix rising

I have always been creative; I took art classes throughout high school and at university. For years, low self-esteem and a sense of low self-worth prevented me from pursuing my dream as an artist and I listened to people who said it was hard to make it as an artist. More importantly, I listened to myself when I said, “I’m not good enough.”

However, as I walked my journey I came to see that I was good enough and that I did have potential. Two and a half years ago, I made a commitment to my art and began selling it at arts and crafts fairs. Before that, I had done commissioned work for friends and friends of friends. Then, in September 2009, I learned that the Carnegie Community Centre — a drop-in centre serving the people of the Downtown Eastside — had an arts grant program that was funded by the Vancouver Foundation, Canada’s largest community foundation. I applied and, surprisingly, I was selected. Not only was I very excited, I was also now accountable for my artwork. I had a body of work to produce and had to answer to someone other than myself for it. I had obligations!

The project included a series of beaded circular wooden and metal containers ranging from 1½ to 7 inches in height. I chose the name “Out of the Ashes,” shortened from “Phoenix Rising Out of the Ashes,” to represent how I rose out of darkness and into the light. I dedicated my project to my niece, Lorraine Horsefall, who died of AIDS in 2006. As part of the program, all recipients exhibit their work, and so last summer I had my first art show. Thanks to this experience, I now call myself an artist, without any reservations.

Creating is a spiritual process for me and what comes out is a tapestry of my life. When I sit still and bead, “me” catches up with “me” — feelings from the past begin to flow and they go into each piece I create. As I continue to walk in and with the Light and to expand spiritually, my work expands along with me.

Photo: Tiffany Cooper

You can’t help but like Francisco Ibáñez-Carrasco.  He is a handsome silvered-haired dynamo, a Latino through and through, who is enthusiastic about everything he touches, even about being alive.  Clearly Francisco loves life and that comes through in the interview which follows.

Not that his life has been an easy one.  Born in Chile forty-eight years ago, he was,  according to his 2011 profile in CATIE’s The Positive Side “raised by a poor, single mother who earned her living cleaning rich people’s houses. As a child he was molested by Catholic priests, and as a teenager he traded sex for cash. “I get along with people with an edge, with difficult lives,” he says, “because I see myself reflected in them.”"

Francisco came to Canada in 1985; within months he was diagnosed with HIV.  Says CATIE “Most of the friends he arrived with in Vancouver moved on to New York City, which was “kind of a gay Mecca in our imaginations,” he says. “We were all young gay men who didn’t know anything about AIDS. We all got infected and they all died. Some of them died of HIV-related complications; some of them died undocumented. So, yeah, there’s a trail of dead people behind me, whom I honour, of course, all the time.”"

Francisco himself was diagnosed with Kaposi’s  Sarcoma back then, its  spots covering most of his body. He saw first one and then a second partner die of AIDS-related complications. But like many others he was saved from the jaws of death by the protease inhibitors which surfaced in 1996.

Meanwhile he had been pursuing higher education at B.C.’s Simon Fraser University where he eventually earned his Ph. D in 1999 – one of the first Canadians with HIV to earn a doctoral degree. His focus since has been on research on HIV and rehabilitation and, latterly, in the training of new researchers in the field of HIV. Resident at the OHTN (Ontario HIV Treatment Network) in Toronto, he has been Program Manager of Universities Without Walls.  Just recently he has been appointed the OHTN’s Director of Education and Training.

As you’ll see, Francisco is a lively and engaging interview subject.  For this interview I asked him the questions off camera with those questions edited out, allowing Francisco’s responses to shine through.

Videography by Guy McLoughlin

Photo by Bob Leahy

This article first appeared in The Positive Side, a publication of CATIE.  

Une version française est disponible ici. 

By Diane Peters

It was 1998 and Ian Nelson’s friends were dying. HIV positive for 12 years, he was feeling terrible on a dual therapy of AZT and ddI. “My mind was mush,” recalls the now 51-year-old Vancouverite. His management job for Canada Post involved a 6:30 am start time and intensive problem solving, and the stress and workload were becoming unmanageable. Feeling depressed and convinced that his health was about to seriously falter, Nelson went on disability leave.

At first, he relished spending long days at the beach. But, within months, boredom and depression set in, and he began taking acid and mushrooms, then progressively harder drugs. By 2000 he was addicted to crystal meth and living on government assistance, relying on food banks, yard sales and dumpster diving to eat.

In 2004, he suffered congestive heart failure. After being released from the hospital, Nelson came to the realization that he wanted to live. While doing outpatient physiotherapy, he began attending 12-step meetings and doing volunteer work with the AIDS service organization (ASO) Positive Living BC (formerly BC Persons With AIDS Society). When someone suggested he apply for a part-time job there the following year, his confidence was still so shot that he nearly didn’t go for it. But he found the courage, landed the job and a couple of years later was hired on full time as the ASO’s reception services coordinator.

Now, Nelson hits the gym three times a week, goes to the beach when he can and recently took his first holiday in eight years, to Oregon. He’s also recently restarted a daily regimen of anti-HIV medications. He thrives on the routine of his job, has built up his confidence and enjoys the positive energy of his co-workers and volunteers. “I’m so happy that I’ve met all these wonderful people. They would not be in my daily life if I was at home.”

 Work of ART

Ever since the late 1990s, when the advent of antiretroviral therapy (or ART) offered a means to effectively control the virus, people living with HIV have struggled with incorporating work into their lives. While HIV is no longer a one-way exit out of the workforce, staying employed has its complications. Many people are still simply not well enough to work, while ­others, who feel good and want a job, face barriers.

Even for those who feel good, that feeling of well-being may come and go. Living with HIV comes with periods of poor health when working is difficult or impossible, episodes that can have a serious impact on people’s health and income stability, as was Nelson’s case.

Of the estimated 65,000 people living with HIV in Canada, no one knows precisely how many are in the workforce. Sergio Rueda, director of health research initiatives at the Ontario HIV Treatment Network (OHTN) led a survey of 2,000 people with HIV in Ontario and found that 40 percent of the men and 48 percent of the women were employed. Rueda also analyzed data from a group of 1,525 HIV-positive men in the United States: 41 percent of them were continuously employed over 10 years, 25 percent were unemployed and 20 percent worked on and off.

Illness, fatigue and side effects such as nausea and ­cognitive problems make a 40-hour work week difficult or ­impossible for some people with HIV. Others who feel well find that working full time makes keeping numerous doctors’ appointments a logistical challenge. Depression, particularly for newly diagnosed people, can hold someone back from pursuing work or the education that leads to a career. People new to Canada may be juggling health ­concerns along with learning English and dealing with government paperwork.

Rules for getting and staying on income and medical support programs can also hold people back from taking a job. Many people feel programs such as the Canada Pension Plan Disability Benefits Program or private long-term disability plans are not flexible enough to take into account episodic bouts of illness and wellness. “Often you’re either in, or you’re out,” says Don Phaneuf, director of employment and volunteer services for the AIDS Committee of Toronto (ACT).

Figuring out if it’s worth it to stop a program and begin work, particularly part time, can be complex. ASOs spend a great deal of time helping clients decipher the rules. Programs usually reduce benefits, potentially also medical benefits, when other income is made. “There’s little incentive for people to work under these programs,” Phaneuf says. The result: Many stay unemployed (sometimes giving back through volunteer work) or find work for which they can get paid under the table.

 Work it out

Theresie Nuwimana is still exploring what it’s like to work and live with HIV in Canada. The 43-year-old knew of her status when she emigrated from Rwanda to Toronto in 2005. When she first arrived, she focused on learning ­English and then enrolled in a program to train to be a personal support worker. Once she began doing home care ­visits, however, she found commuting and working long hours to be too much. “I was exhausted by the end of the day. It ­wasn’t good for my health.” So Nuwimana went back to school and graduated this past autumn from a counselling and advocacy program at George Brown College.

However, her last placement at a women’s shelter also proved a challenge. Since she sometimes needed to start late to work around doctors’ appointments, she felt it wise to disclose her status to her supervisor, who was understanding and supportive. She did not want to disclose to any other staff, though it was hard to avoid their curiosity. Because Nuwimana worked shifts, she was constantly teamed with new co-workers, some who didn’t necessarily understand her need to work flexible hours or why she had yet another appointment. “I want to work in a smaller place,” she says. “What I really want to do is work in an HIV organization, where my co-workers will understand the reason I might have several doctors’ appointments in one month.”

No one starts a job knowing everything about it, and discovering what you need once you’re on the job is not uncommon. “It’s important for people to understand their tolerance for a bit of uncertainty,” says Melissa Popiel, coordinator of HIV and Episodic Disabilities Initiatives for the Canadian Working Group on HIV and Rehabilitation (CWGHR). “For example, you may not know in advance what your ­benefits plan will be like, or what the workplace culture will be.”

And not all jobs suit people with HIV. Many tend to avoid high-stress jobs and physical work that involves heavy lifting. Shift work can wreak havoc on sleep and med schedules. Those who experience cognitive side effects from their meds also have to take that into account when looking for work.

As well, an HIV-positive person may need the workplace to be accommodating in certain ways. “[People with HIV] should know that they have a right to be treated without discrimination in the workplace. That’s one thing,” says Renée Lang, staff lawyer at the HIV & AIDS Legal Clinic Ontario (HALCO), “but you also have a right to accommodation because of your disability.” Except for jobs under federal law (such as working for the Canadian government), the specifics of those rights fall under provincial labour standards and human rights legislation. “Most of the time, what clients are asking for is quite reasonable,” Lang says—access to a private bathroom, a place to store meds or a quiet room for naps or downtime. Most commonly, people are requesting flexible hours, like starting an hour later some days.

“Workplace accommodation is a process,” Popiel says. People taking on a new job should be sure they can do the core tasks—the accommodation would make small changes to the work environment so the job is accessible and not unhealthy for someone with a disability. While employees have the right to these changes, employers have rights too, and the law protects companies from making accommodations that would affect the success of their businesses.

Employees should be prepared to discuss options with their employer and know that if there are a number of appropriate options, employers can choose the one that best fits the needs of the organization. “If an accommodation isn’t working well, employees should talk with their employer immediately, so that the problem doesn’t become a performance issue,” Popiel advises.

To set up the right accommodation, people with HIV have to speak up at work. However, that does not necessarily mean disclosing their HIV status. In fact, most jobs in Canada do not require disclosure, and privacy and human rights law protects your right to not disclose.

While many worry that ill treatment of HIV-positive people in workplaces is common, Lang says  that, in fact, such cases rarely come up. “Frankly, we see more concerns about stigma and discrimination than we see it playing out.” (Discrimination on the job?  has more information about your options if you feel you are facing discrimination because of your HIV status.)

There are few occupations that explicitly exclude HIV-positive people, and even these vary across the country. For example, in Ontario, the only job that a person with HIV is not permitted to do is that of emergency medical technician (EMT, also known as a paramedic). Alberta has no guidelines around HIV status and this occupation. Physicians must disclose their status to their professional college but not to their employer or patients, and they can safely do their jobs thanks to universal precautions. (This was tested within the legal system after a Quebec pediatric surgeon’s HIV status was revealed following her death in 2003. The Canadian Medical Association stated that she had no obligation to disclose.)

People with HIV must reveal their condition to an employer’s health insurance company but even that is private. For instance, if human resources asks you to fill out a medical form and hand it to them, you can request to send it to the insurer directly. Lang says it’s important to never lie on questionnaires that ask if you’re taking medication or have underlying health issues. Just tick off “yes,” and use the comment section to say that your condition will not affect your work.

To get accommodation, a person must provide a doctor’s note, but that can state that you suffer from fatigue or nausea without revealing the underlying cause. By law, your employer can’t probe for more details.

Working freelance is an option that avoids dealing with an employer and a workplace, and it seems like the perfect job: work from home while running your own business. No office politics to stress you out, no rigid start time to interfere with sleep and meds, and no commute. Many people with HIV thrive as freelancers and find it’s the only way they can work and stay well. Others find challenges in this career path.

Such as John Smith. For years he was a successful self-employed retail consultant. But the stress of his HIV diagnosis in 2010 and feeling unwell made it impossible to work for a few months. Being at home alone, letting his business slide, did not help: “It made me reclusive and isolated.” Freelancers can lack the kind of social support those with traditional jobs often find at work. They don’t have access to company benefits plans. And the worry that comes with business fluctuating doesn’t help stress levels.

Smith soon got his health back on track and worked with Employment Action in Toronto to rebuild his resumé and find a full-time job. Going out every day, seeing other people and keeping busy has done a lot for him. “It gives me something to distract me,” he says. “I feel good about myself rather than staying at home and worrying about my illness.”

Positive payback

For people with HIV who do manage to get around the challenges and either continue working or return to work, the value is huge. In a recent survey study, OHTN’s Rueda looked at 18 previous studies charting workplace status and health. These reports revealed that working is not just associated with good health—since, of course, healthier people are more likely to work—but also that “these findings suggest causation,” Rueda says. “Employment leads to better health.” He also discovered in this study that losing a job can put a dent in your health, but going back to work later on can bump it back up again.

A paying job gives you money, which allows you to eat well, find a good home and, like Ian Nelson, enjoy healthful perks like gym memberships and vacations. In a 2011 survey of people with HIV in Ontario led by Rueda, people said the most important thing a job gave them was a sense of identity. “Work lets you be defined by what you do, not just by your illness,” says André Samson, professor in the department of counselling at the University of Ottawa. “Working is the normal experience during adult life. It is our main activity, it’s how we express ourselves and are a part of society.” As well, jobs can offer a social network to lean on when times are tough.

To capitalize on these benefits, some organizations are trying to remove return-to-work obstacles at the government and workplace levels. And not just for people with HIV: Arthritis, mental illness and some cancers—conditions that affect millions of Canadians—are also episodic disabilities that can affect a person’s ability to work full time. Organizations such as CWGHR are working with governments to change social support rules and educating workplaces about discrimination, accommodation and episodic illnesses. Their work is having an effect. For instance, when Popiel began speaking to human resources professionals four years ago, only a few had heard of the term “episodic disabilities.” These days half the room knows the term.

Services for HIV-positive people seeking work are also growing. People in Toronto can turn to ACT’s Employment Action to talk about career issues, spruce up their resumes and find jobs. Across Canada, people with HIV and anyone with a chronic illness can access CWGHR’s newly launched Episodic Disabilities Employment Network  (EDEN), a web-based peer support portal.

These changes are not yet enough to get every HIV-positive person who wants a job out there working for a regular paycheque. But they’re a start toward enabling people to build a future for themselves and showing the work world that HIV does not have to stop someone from contributing. People with HIV or other episodic disabilities have both a right to work and a great deal to offer to our society and economy.

**************************************

Diane Peters is a Toronto-based freelance writer and teacher. She writes about health, business, parenting and other issues. This article was researched with funding assistance from the Canadian Institutes of Health Research (CIHR).

 Illustrations by Raymond Biesinger

Hot topics in HIV & work

Newcomers – Many HIV-positive immigrants face unique challenges, including language and cultural barriers and a lack of understanding of how to navigate the Canadian job market—on top of the day-to-day struggles of living with HIV.

Retirement – Many HIV-positive people contemplating retirement face a big question about how to access drug and health benefits after retiring. As more and more people with HIV move toward retirement, this issue will become even bigger.

Policy changes – Finally, employers need help to understand the implications of new and upcoming policies designed to help protect people with disabilities in the workforce. In 2010, Canada ratified the Convention on the Rights of Persons with ­Disabilities (CRPD). As well, Ontario is in the process of implementing the Accessibility for Ontarians with Disabilities Act (AODA) and other provinces are looking at similar laws. Holding governments and employers accountable for putting these standards into action will help people with HIV enter and stay in the workforce.

Discrimination on the job?

If you’re being discriminated against on the job, or if you get fired—you suspect—because of your HIV status, there are ways to seek justice. If you’ve been at a job for a few years, it might be worthwhile to pursue fair severance through the courts with the help of a lawyer. Or, if you haven’t worked at a job for long, or you’ve experienced serious discrimination, you might seek damages through your province’s human rights commission. If you were seriously wronged, you could get an apology or even a monetary settlement.

But be forewarned: Seeking justice is not an easy process. It takes time and your previous employer might say some pretty nasty, even untrue, things. “If you put in a complaint,” says HALCO’s Renée Lang, “you’re going to hear stuff back that you don’t want to hear.”

Work tools

The following resources provide information or ­support on employment issues for people with HIV. To find support in your area, visit www.aso411.ca  for an AIDS service organization close to you. Or call CATIE at 1-800-263-1638 and we can direct you to a local organization.

Episodic Disabilities Employment Network (EDEN) 

Canadian Working Group on HIV and Rehabilitation (CWGHR) (check out Information for People Living with HIV)

Resources from Interagency Coalition on AIDS and Development (ICAD)  (search for the term “disability”)

Fact sheets on HIV and work from AIDS Calgary (on the Publications page)

Employment Action (a program of the AIDS Committee of Toronto) (serves the Greater Toronto Area only, but check out the Working and HIV/AIDS section)

Canadian HIV/AIDS Legal Network 

HIV & AIDS Legal Clinic Ontario (HALCO) (serves Ontario only)

This information was provided by CATIE (Canadian AIDS Treatment Information Exchange). For more information, contact CATIE at 1-800-263-1638 or This email address is being protected from spambots. You need JavaScript enabled to view it.

CATIE also maintains a blog on PositiveLite.com which you can find here.

As the warmer weather approaches, so does the HIV research conference season. Yes, we get excited about HIV research conferences here at CATIE. In late April, the Canadian HIV research community gathered for the annual conference put on by the Canadian Association of HIV Research —known to us HIV geeks as the CAHR conference. And of course, the big biennial International AIDS Conference is being held in July in Washington, DC.

It becomes very evident during an HIV research conference that the true stars of HIV research are not the eminent scientists with their big pronouncements, but rather the people with HIV who partake in clinical trials and make all of the work possible. Without them, HIV research would be all microcentrifuge tubes and mathematical models. And while that sounds positively intergalactic, the people who participate certainly are not. They’re people with HIV from across this country. Heck, they might even be you.

Have you ever thought about participating in a clinical trial? Or perhaps you’ve been approached by one of your healthcare providers to participate? CATIE wants you to be informed as you make your decision, so here are a few links to other resources we think might be useful. Our partners the CIHR Canadian HIV Trials Network (CTN) and Canadian AIDS Society have produced a new edition of Clinical Trials: What you need to know. The handbook lives up to its name, giving lots of info on key issues, all in an easy Q&A format.  Hard copies of the book will be available from the CATIE Ordering Centre. “Treatments on Trial” from the Spring/Summer 2005 issue of The Positive Side provides some personal perspective.

Finally, if you’re ready to take the plunge, check out the CTN’s list of HIV clinical trials that are enrolling participants. 

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Traitements à l'essai 

CATIE met en avant les ressources sur les essais cliniques pour les PVVIH qui pensent y participer.

L'arrivée du beau temps coïncide avec le début de la saison des congrès de recherche sur le VIH. Et oui, chez CATIE, nous nous réjouissons de l'arrivée de ces congrès. À la fin avril, les chercheurs canadiens se consacrant au VIH se sont rassemblés à l’occasion du congrès annuel organisé par l'Association canadienne de recherche sur le VIH — que nous, les maniaques du VIH, connaissons sous le nom d’ACRV. Et bien sûr, le grand Congrès biennal international sur le sida  aura lieu en juillet à Washington D.C.

Lors d'un congrès scientifique sur le VIH, il devient vite évident que les vraies vedettes de la recherche ne sont pas les éminents scientifiques avec leurs grandes déclarations, mais bien les personnes vivant avec le VIH qui prennent part aux essais cliniques, rendant ainsi tout ce travail possible. Sans elles, les recherches sur le VIH ne seraient que des tubes à microcentrifuge et des modèles mathématiques. Et même si tout cela nous semble intergalactique, ce n'est évidemment pas le cas des participants. Ce sont des personnes de partout au pays qui vivent avec le VIH. Hé, vous en faites peut-être même partie.

Avez-vous déjà songé à participer à un essai clinique? Ou peut-être que l’un de vos professionnels de la santé vous a déjà abordé afin d'y prendre part? Chez CATIE, nous souhaitons que vous preniez votre décision en toute connaissance de cause. Voici donc quelques liens vers d'autres ressources qui peuvent vous être utiles. Nos partenaires, le Réseau canadien pour les essais VIH des IRSC (RCEV) et la Société canadienne du sida ont produit une nouvelle édition du livret Les essais cliniques : Ce qu'il vous faut savoir.  Celui-ci porte bien son nom puisqu'il fournit quantité de renseignements sur les points essentiels sous la forme conviviale de questions-réponses.  Vous serez bientôt en mesure d’en commander des exemplaires à couverture rigide auprès du Centre de distribution de CATIE.  L'article « Les essais cliniques »  paru dans le numéro printemps/été 2005 de Vision positive propose quelques points de vue personnels.

Enfin, si vous êtes prêt à faire le grand saut, visitez la liste des essais cliniques sur le VIH qui recrutent des participants du Réseau canadien pour les essais VIH. 

This article first appeared in The Positive Side, a publication of CATIE.  

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 This email address is being protected from spambots. You need JavaScript enabled to view it.

CATIE also maintains a blog on PositiveLite.com which you can find here.

There has been a flurry of articles recently with headlines like “Undetectable Viral Load? Not Necessarily in Semen” like this one in POZ.  Discovery of this connection isn’t the least bit new, of course, but what’s drawn attention is new research from Boston which furthers our understanding of the associated risk a little more. More on what that research says in a moment.

The headlines may sound alarming for those who thought, because they’d reached undetectable, they were much less infectious because of low levels of virus in their blood. But if there is in fact virus in the semen, are we back to square one, the walking time bombs we’ve always been? Certainly the headlines seem to imply that. And certainly the headlines seem to reinforce the message for poz guys everywhere “wear a condom, whatever your viral load”.  But do the headlines reveal the full picture?

It’s clear we’ve made good progress towards quantifying what IS the risk of virus in the semen, and in the associated risk of HIV transmission. Today I want to look at what we’ve learned and what are the implications for people living with HIV.

Semen – the traditional view

The virus in the blood vs. virus in the semen debate is a complicated and technical one. As a result, there has been a tendency for prevention experts to try and make things simple for us. Here’s how CATIE, for example, answers the question “If my viral load is undetectable, can I still pass HIV to others?”  

“Yes. While HIV may not be detectable in the blood, there might still be enough to infect someone. Also, there may be higher levels of HIV in semen or vaginal secretions. So, even if you have an undetectable viral load, you might still infect someone if you share needles or have unprotected sex.”

There is nothing here that isn’t absolutely correct.  But the answer doesn’t help quantify the risk for us – and quantifying risk, or trying to, is exactly what informed decisions are built on. In this particular case, we need to know what science tells us about three key questions:

• What is the likelihood of virus appearing in the semen if it can’t be detected in the blood?
• Where virus is detected in semen, what are the likely concentrations?
• Are those concentrations likely to cause HIV transmission?

All three questions are answerable, albeit with provisos, from research. That research suggests, in a nutshell, that while a quarter of ‘undetectable’ gay men have HIV in semen, the risk of transmission is likely quite low.

The research on “undetectable” gay men’s semen.

The Boston research has helped quantify the likelihood of both virus being present in the semen in "undetectable" men and the likelihood of it causing transmission. This study involved 101 gay/bi men. This AIDSmeds article summarizes the results. Eighty-three of the 101 men had undetectable levels of HIV in their blood samples. Though most also had undetectable HIV in their semen samples, 25% of those had detectable seminal viral loads. This is in the range that previous studies have confirmed.

What’s interesting is that the men who had an STI were 29 times more likely to have viral discordancy. The implication is that without an STI, undetectable in the blood means, way more often than not, undetectable in the semen.

Now let’s look at those 25% of undetectable men where virus was detected in their semen, because it’s important to understand how much virus was present.  The median level in the semen was 200 - in other words, unlikely to infect anyone.  A viral load below 1,000 has in fact, rarely been associated with HIV transmission.

So let’s summarize what we’ve learned from Boston: if you have an undetectable viral load there is a one-in-four chance of virus being measurable in your semen, considerably smaller if no STIs are present. And if that virus in your semen reflects median levels found in the study, the chances of transmission are tiny.

The problem is that median levels are just that – some men will in fact have higher levels of seminal virus, thus increasing the risk of transmission.  So, while the median range for measurable semen may have been 200, the actual range was 80 to 2,560 copies. We need to look at other research to find out whether those higher levels of seminal virus are likely to cause transmission.

It’s not as clear cut as one would like, but AIDSmap reports a small 2008 study from San Francisco found that the median seminal viral load in men transmitting HIV to partners was 4,300 and the lowest was 110. A larger (1,199 gay men) 2009 study from the UK found that two out of 41 transmissions of HIV (5%) were from men with an apparently undetectable viral load, as measured in their blood.

BUT as AIDSmap  qualifies “studies of the link between viral load and transmission suffer from it being difficult to pin down transmitters in a cohort of gay men with multiple partners and where viral load may be measured months after the transmission.”  In other words, it is wrong to conclude the men had undetectable virus (in the blood) at the time of transmission.

What does all this mean? It’s hard not to suggest that in “undetectable” men, virus in semen at levels likely to result in HIV transmission represents anything other than a small but nevertheless potential risk.

How we process risk.

It’s notoriously difficult to turn research data like this in to helpful risk guidelines, a topic which was explored in some depth in my recent interview with CATIE’s James Wilton here. 

What is clear is that the risk associated with semen in otherwise undetectable men is low, but cannot be expressed as zero.

But what risk CAN be expressed as zero? Certainly not with  condoms, the cornerstone of our HIV prevention programs.  A recent literature review reported in CATIE concluded condoms can be highly unreliable. CATIE summarizes “The review found that there is a variety of ways in which condoms are being used incorrectly and the prevalence of incorrect condom use is surprisingly high.”  That and breakages, even when condoms are used properly, present an alarming  picture.  Breakage and slippage or complete failure of the condom to afford protection was reported in 25-45% of those studied, with an event rate of up to 8%.  (“Fit or feel” issues, by the way, were reported in 7-30% of those  studied and in up to 45%  of events, with erection difficulties reported by 19-20%  and up to 20% of events.)

How do condoms stack up to undetectable viral load as a means of affording protection?  Some prominent advocates have suggested that the use of condoms in people living with HIV affords LESS protection than having an undetectable viral load.  Respected POZ magazine founder Sean Strub said that here. Even Canada’s most prominent AIDS researcher, BC’s Dr Julio Montaner said in a PositiveLite.com interview “I’m very comfortable that HAART is at least as protective – or more – than condoms.”

Overall though, we’ve been slow to acknowledge the risk from unprotected sex amongst sero-discordant partners has changed radically since the advent of undetectable viral load.  But here’s a recent exception. The ever-progressive Heath Initiative for Men (HiM) said just this month ”Most of the time, guys with undetectable blood viral loads who are taking treatment as prescribed, and get tested regularly for STIs (and treated if need be), also have undetectable viral loads in cum and rectal secretions.”

They go on, very significantly, that “for some gay men, if their partner is on treatment as prescribed by his doctor, has an undetectable blood viral load that is monitored regularly and is getting tested (and treated if need be) for STIs regularly, their risk of picking up HIV is greatly reduced, even without condoms. This may be something you want to talk about with your partner, together with his doctor.”

Conclusion

Given the evidence, even with its gaps, it’s not unreasonable to suggest that  the risk of transmission associated with semen when your blood viral load is undetectable has been over emphasized and overstated.  Why? It’s hard not to think it’s connected with our desire to see condom use maintained.

Not that this desire isn’t well founded. Condoms may not be 100% effective, or even close, but they are the best prevention technology we have right now.  So let’s be clear; it’s inappropriate for people living with HIV to stop using condoms, whatever their viral load, without carefully reviewing the risk to themselves and their partners.  That, as HiM suggests, may involve discussion with your partner and your doctor, hopefully an informed one.

But ultimately it depends, as does life in general, on what risk you consider reasonable. You make similar informed decisions every time you cross the road.

PositivelIte.com writer Michael Bouldin said “It’s not that we don’t know what constitutes risky behavior; it’s that it’s simply not possible to always avoid it, or in a given moment even desirable. Walking a red light can get you killed; it can also get you to a job interview on time.”

How we process risk is fluid too.  It depends on the context – the time, the place, the partner – and to what extent we are informed.  And to be frank, there are problems here. Canadian Treatment Action Council (CTAC) chair  Alex McLelland recently said on PositiveLite.com “As a community, we have not developed or even responded with relevant guidelines on how to incorporate the new reality that people living with HIV who are on treatment and have viral suppression do not always need to use condoms.”   

So risk is a very fluid concept for us consumers, isn’t it? It’s less so for HIV educators, who need to ensure that anything less than zero risk constitutes a warning shot across our bows.

Warning shots are fine and we need them. But we need to interpret them, try to qualify the degree of risk that might apply to us, just as we hover on the curb before crossing the road. In the case of the danger of virus in semen in those of us who are undetectable, the warning shot doesn’t pack a lot of punch for me, if you peel its skin away and look at the underlying research. But your experience may vary. In the context of informed decision making, you really need to make up your own mind.