This article first appeared on the website of CATIE  here.  

Une version française est disponible ici. 

Recent advancements in our understanding of HIV transmission, treatment, prevention and testing are changing the landscape of our response to HIV and generating a significant amount of optimism. The buzz at the International AIDS Conference this past July in Washington D.C. was that we may now be able to achieve an ‘AIDS-free generation’ where first, no one will be born with the virus; second, that as people age, they will be at a far lower risk of becoming infected than they are today; and third, that if they do acquire HIV, they will get treatment that keeps them healthy and prevents them from transmitting the virus to others.

Similarly, the United Nations AIDS organization has launched a ‘Getting to Zero’ campaign for this World AIDS Day, December 1, signifying the aim of getting to zero new infections, zero AIDS-related deaths, and zero discrimination.  

There are many reasons why we should feel these commendable goals can be achieved. But there are also significant challenges that need to be addressed before we get there.

New understanding about HIV

First, a word about those things that give us confidence.

We now have newer medications for people living with HIV that are easier to take and have fewer side-effects, thereby making HIV treatment more manageable. These medications also allow people living with HIV to have a near-normal life expectancy. We also have a much better understanding of the importance of starting treatment earlier in order to achieve better health outcomes.

Treatment can also help prevent the transmission of HIV. Research shows that people living with the virus who are on successful antiretroviral therapy and have a fully suppressed viral load (undetectable) are less likely to pass HIV onto others.

Due to these advancements in our understanding of the virus, treatment guidelines now recommend that people living with HIV begin antiretroviral therapy as soon as they are ready after diagnosis.

The importance of early detection

To complement the uptake of early treatment, we have also made progress in developing new testing technologies and strategies that allow us to detect HIV earlier and faster than ever before, allowing HIV-positive people to learn about their status much sooner after becoming infected. 

Early diagnosis is crucial to our success in preventing HIV transmission for three major reasons.  First, it may help identify people during the first few months after HIV infection when their viral load and risk of HIV transmission is at an all-time high. Second, it gives newly diagnosed individuals the option to start treatment earlier. And lastly, the majority of people diagnosed with HIV take active measures to reduce their risk of passing HIV on to others.

New prevention approaches

Although condoms and clean needles are the backbone of our prevention efforts, we are learning about additional prevention tools that can also be used. We now know that the same drugs used to treat HIV can be used by HIV-negative people to help reduce their risk of an HIV infection. These preventative approaches are known as post-exposure prophylaxis (PEP) and pre-exposure prophylaxis (PrEP). While PEP is the standard of care for occupational exposure to HIV, its availability for non-occupational exposures and its cost vary greatly across Canada. Although PrEP is not currently approved for use by Health Canada, some doctors may already be prescribing it to their patients (known as ‘off-label’ use).These new prevention approaches are promising options for HIV-negative people who are at a high risk of getting HIV.

HIV drugs, in combination with other strategies such as not breastfeeding can also help eliminate the transmission of the virus from an HIV-positive mother to her newborn child.

Challenges we still face

Despite these advancements, translating them into a generation without AIDS or without new HIV infections remains challenging. The hurdles we continue to face include limited financial resources applied to HIV prevention and treatment, and the barriers people living with and at-risk of HIV face when accessing HIV-related services.

Additionally, people living with HIV can be criminally prosecuted for not disclosing their HIV status to their sexual partners, which can discourage them from wanting to know their status, and thereby opting out of getting tested.

Stigma, discrimination, and poverty can make it difficult for marginalized populations to access services, which explains why some populations are more strongly affected by the HIV epidemic. The reality is that a number of Canada’s communities have a high prevalence of HIV. According to the latest estimates (2008) by the Public Health Agency of Canada, gay men and other men who have sex with men represent a majority (51 per cent) of people living with HIV. People who use injection drugs represent 20 per cent, people from regions where HIV is endemic (such as Africa and the Caribbean) represent 14 per cent, and Aboriginal people represent eight per cent of the total HIV epidemic in Canada.  

Where do we go from here?

It’s clearer than ever that HIV prevention, testing, care and support, and treatment are all mutually reinforcing elements of an effective response to realizing an ‘AIDS-free generation.’ At CATIE, we feel these advancements call for an ‘integrated approach’ to HIV treatment and prevention. Such an approach will be discussed, for example, in September, 2013, when CATIE will host a forum that will explore the recent developments in HIV and determine ways to integrate HIV treatment and prevention for us to move forward in an effective way.

While we are still years away from an ‘AIDS free generation,’ we appear to be on the right path. It only takes a look back 30 years ago at the despair we once felt in the face of this unknown disease to see how far we’ve come. 

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

Une version française est disponible ici. 

I FIRST NOTICED a slight reduction in my ability to think clearly in 1993, when my CD4+ cell count fell below 200. I just didn’t feel as sharp.

A year later, when I got PCP, the life-threatening pneumonia that is a hallmark of AIDS, my handwriting deteriorated so much that I had to concentrate to write legibly. About five years ago, I started having trouble remembering names of famous people. Over the next couple of years, these memory lapses progressed to the names of colleagues and then friends, which was awkward, to say the least.

I also began to have difficulty finding words. It started with complex words. My brain would substitute another similar-sounding or simpler word. My sentences began to be filled with “thing” or “stuff” or “you know.” As it got worse, I forgot everyday words. As an AIDS activist, I used to speak in public regularly. Gradually, I began to shy away from those activities because it was embarrassing to be fumbling for words. I was acting like a stereotypical geriatric, not a 40-something lawyer.

Fortunately, about two years ago, I found some strategies that helped and I’ve gotten much, but not all, of my functioning back. Based on my personal experience and some additional research, here is what I learned about protecting the brain.

First, some terminology

The term cognition refers to the high-level functions of the brain, such as speaking, seeing, calculating, processing information, remembering, planning and problem-solving. When these processes are reduced, experts use the term neurocognitive impairment, or NCI.

When reading about NCI, you find very similar-sounding terminology. Dementia, for example, is a general term that refers to a severe decline in cognitive function that interferes with daily activities. It is not a disease itself but a group of symptoms that may accompany a disease or condition. AIDS dementia complex is a term introduced in 1986 to refer to the severe cognitive deficits and motor and behavioral changes associated with advanced HIV disease.

With advances in HIV research, our understanding of the effects of HIV on the brain has become more nuanced. Now, experts often speak of HIV-associated neurocognitive disorders (HAND). This umbrella term covers a range of disorders of increasing severity — from asymptomatic (signs of impairment on neuropsychological tests but no loss of function in day-to-day life) to mild (signs of impairment in both tests and daily living) to the most severe form, HIV-associated dementia (HAD).

How common is NCI among PHAs?

Experts are still not sure how common NCI is. Since the advent of highly active antiretroviral therapy (HAART), rates of the severe form — HAD — have declined dramatically in the developed world, from about 50 percent down to as low as 2 percent. University of Alberta’s Dr. Chris Power, one of North America’s leading neurologists, has estimated that about 7 percent of the more than 3,000 patients in the HIV clinics in Calgary and Edmonton have HAD.

Milder forms of NCI may be more common, and researchers in the United States are taking an in-depth look at this issue in the CHARTER (CNS HIV Antiretroviral Therapy Effects Research) study. Their results, released this past summer, indicate that the rate of NCI was 52 percent among 1,555 middle-aged HIV-positive volunteers — with 21 percent having mild impairment, 29 percent moderate and 2 percent severe.

Similar findings have been made by Dr. Sean B. Rourke, a neuropsychologist, scientist and the director of research in the Mental Health Service at St. Michael’s Hospital in Toronto. Having done neuropsychological testing on more than 500 people with HIV/AIDS (PHAs), he found NCI prevalence ranging from about one-quarter to one-third among people with HIV and up to 50 percent in people with AIDS, excluding those with conditions that can also cause NCI (such as depression or a history of traumatic brain injury). Dr. Rourke notes that his data are slightly biased because he sees patients who have been referred for cognitive problems.

There is not yet a general consensus on these data, but it is clear that NCI — especially its milder, subtler forms — may be touching a large proportion of PHAs.

What causes NCI?

HIV enters the brain early on in the course of infection. Although it doesn’t infect brain nerve cells (neurons), HIV damages them both directly and indirectly. Proteins from HIV-infected cells cause the release of certain chemical messengers (neurotransmitters), which, in turn, cause inflammation, excitation and even cell death. In a less direct fashion, HIV infects other cells in the brain that cause a release of toxins that damage that organ.

HAD is associated with advanced HIV disease, and although rates of HAD are declining, the milder forms of NCI are not necessarily following suit, says Dr. Ian Everall, a professor of psychiatry at the University of California, San Diego. He speculates that while HAD may be caused by the direct toxicity of HIV in the brain, milder forms of NCI are caused by secondary processes brought on by low-level presence of the virus: “HAD is a product of uncontrolled viral replication and immune suppression, so when we control replication with HAART, we get less HAD. But perhaps we are still living with low-grade infection and inflammation, which is subtly affecting the neurons and causing mild neurocognitive disorder.”

Along with HIV and aging (see next section), there are many other factors that can cause or contribute to NCI, depending on their severity, including: depression, concussion, learning disabilities, alcohol or other substance-use disorders, non-HIV-related neurologic conditions (such as epilepsy and multiple sclerosis), systemic diseases (such as high blood pressure, diabetes, asthma and thyroid disease), hepatitis C virus and vitamin B1 and B12 deficiencies.

Aging and NCI

Aging affects the structure and function of the brain, slowing it down, making it less accurate and reducing its capacity to store and retrieve memories. Again, scientists have a range of terms for the severity of this decline, beginning with age-related cognitive decline, which is associated with normal aging. Mild cognitive impairment, evidenced by poorer memory and performance on neuropsychological testing, is seen in about 20 percent of those over 70. The most severe impairment is dementia, one common cause of which is Alzheimer’s disease. This irreversible illness severely and progressively affects cognition, behavior and motor functions and day-to-day living. Most often found in people over 65, its incidence doubles about every five years from then. Approximately 50 percent of HIV-negative people over 80 have Alzheimer’s.

“It is a concern that with the aging of the HIV population we may be seeing additional effects of age [on NCI],” says Dr. Power. He hasn’t seen much Alzheimer’s in HIV-positive patients until they’re in their 70s, but some studies have shown signs of Alzheimer’s disease in the brains of PHAs much earlier. In a small substudy of brain samples from HIV-positive people over 55, Dr. Everall and his colleagues from the National NeuroAIDS Tissue Consortium found beta amyloid plaques, a characteristic of Alzheimer’s disease, in 35 out of 36 brains.

For years, doctors and PHAs have suspected that HIV causes accelerated aging of the body. It wouldn’t be surprising if the virus had this effect on the brain, too. In a recent small study, the blood flow in the brains of PHAs appeared similar to that of HIV-negative people who are 15 to 20 years older. Dr. Rourke says that with neuropsychological testing “in those [HIV-positive people] with mild neurocognitive disorder, I am seeing an accelerated aging, like 10, 15 or even 20 years older.”

Do you have HAND?

If you suspect that you have a problem with your cognition, the first step is to see your doctor. He or she may refer you to a specialist for further testing. Diagnosis of HAND involves neuropsychological testing that evaluates different parts of brain functioning. If you have signs of mild neurocognitive disorder, your doctor will take a full history and perform tests to determine the conditions that might be causing the impairment.

HAART for HAND

“HAART is the cornerstone of treatment for HAND,” Dr. Power says. Early intervention with HAART can reduce the risk of HAND and decrease symptoms. From a number of recent studies, it appears crucial to begin HAART before the CD4+ count falls below 200 — how much earlier is not certain. It may well be that HAND, even if it is not affecting daily functioning, should be an indicator for treatment.

Which combination of drugs to take is another question. Some antiretrovirals are better than others at passing through the blood–brain barrier, which keeps many toxins out of the brain and spinal cord. Recent studies, including CHARTER, indicate that having a regimen with more drugs that can penetrate the barrier leads to reduced rates of NCI.

Some researchers have developed a system of ranking the ability of antiretrovirals to penetrate the blood–brain barrier (see chart below). However, there are no official guidelines as to whether or not to change a HAART regimen if you have an undetectable viral load but are showing signs of NCI. That is an individual decision between you and your doctor.

Penetration of anti-HIV drugs through the blood-brain barrier

Adapted from Letendre S, et al, 13th CROI, 2006, Abstract 74

Nutrition and more

When I first did neuropsychological testing with Dr. Rourke 10 years ago, I asked what I could do to preserve my memory. He told me: “Whatever helps the heart, helps the brain.”

I found two fairly similar approaches — the Pritikin Program for Diet and Exercise created by Nathan Pritikin and The Spectrum Lifestyle Program founded by Dr. Dean Ornish — that have proven results in reducing heart disease, cancer, diabetes and their contributing factors. (You can also read more about these programs in The Pritikin Edge by Robert E. Vogel, 2008, and The Spectrum by Dr. Dean Ornish, 2007.)

Last August I went to the Pritikin Longevity Center in Florida for two weeks and saw a 30 percent drop in my cholesterol and a 50 percent reduction in my insulin levels. I also felt 15 years younger, physically and mentally. In a nutshell, this is the recommended lifestyle at the Pritikin Center:

• diet: fruits, vegetables, beans, soy, fish, whole grains, no added fat, nonfat dairy, no added salt, little or no coffee and alcohol
• vitamin D3: 1,000 to 2,000 IU/day, depending on test results
• exercise (aerobic, resistance, flexibility): 6 to 7 days per week
• stress management: meditation, yoga
• no smoking
• sufficient sleep 

With respect to diet, Lark Lands, a medical journalist, editor and longtime AIDS treatment educator and advocate, suggests taking plenty of natural anti-inflammatories, as inflammation plays a key role in the processes that block and damage arteries. Avoid fats that promote inflammation, such as partially hydrogenated oils (“trans fats”) and polyunsaturated vegetable oils. Some examples of naturally anti-inflammatory foods and seasonings are: ginger, turmeric, bioflavonoid-rich fruits (such as colourful berries, grapes and citrus fruits), omega-3 fatty-acid-rich foods (such as wild, fatty fish, flaxseed and walnuts) and garlic (eating more than a couple cloves of raw garlic may interact with some drugs, so speak with your doctor and pharmacist about possible interactions with your meds). 

According to Lands, many of the mental changes experienced in HIV disease may be the result of advanced vitamin B12 deficiency. This deficiency can cause memory loss, confusion, chronic fatigue, decreased reflexes, unsteady gait, weakness, neuropathy and depression. B12 deficiency is common in PHAs and older adults. Unfortunately, the tests commonly used to assess B12 status may not be reliable, often indicating that a person has “normal” levels when, in fact, there is a deficiency. Consequently, vitamin B12 therapy based on symptoms, rather than test results, is recommended.

To maintain general health and protect mental functioning, Lands recommends taking a high-quality multivitamin, an antioxidant formula, fish oil (try to find mercury-free kinds), vitamin B12, folic acid and N-acetyl-cysteine (NAC).

Exercise

A number of studies in sedentary seniors who took part in fitness programs have shown that exercise improved their cognition. Exercise may promote the growth of brain cells and increase human growth hormone, which can help cognition.

Exercise is important, especially when you’re HIV positive, because it may prevent or help a slew of conditions (including diabetes, high blood pressure, chronic kidney disease and depression) that might adversely affect cognition.

Learning ballroom dancing, particularly tango, may be good not only because of the physical exercise and social interaction but also because of the mental benefits. “There are trends that suggest that tango is good for working memory and divided attention,” says Patricia McKinley, associate professor at the McGill School of Physical and Occupational Therapy. “I think that any challenging dance would be good for you.”

Fitness for the brain

A couple of years ago, I saw Dr. Norman Doidge, Toronto psychiatrist and researcher, speak about his book, The Brain that Changes Itself. He explained how the brain is plastic and therefore can change based on what you do and think. He also mentioned the success of the Brain Fitness Program (BFP) in improving the memory of healthy seniors. I went online and read about the early impressive results of the IMPACT study (Improvements in Memory with Plasticity-based Adaptive Cognitive Training), a randomized, double-blinded prospective study of the Brain Fitness Program by researchers from the Mayo Clinic and the University of California, San Francisco. Among 524 HIV-negative seniors, those using the BFP had a 131 percent increase in brain processing speed. Their memory improved to that of individuals 10 years younger on average. Their neuropsychological test performance was significantly better than the active controls. And 75 percent of participants self-reported positive changes.

I purchased the computer program. Although there was no evidence that it could help people with HIV, I thought, what do I have to lose? I did the 40 one-hour sessions — one hour per day, five days a week, for eight weeks. As a result of the sometimes-grueling exercises, I had a 54 percent increase in brain processing speed, plus I noticed I had much better word recall and short-term memory. I wasn’t fumbling for words anymore. I could remember names of people I met. My hearing, handwriting and especially my self-confidence improved.

I recommended the program to a friend, who went to Dr. Rourke for neuropsychological testing before and after doing the BFP. He had a 34 percent increase in brain processing speed. More importantly, he went from testing below normal in all areas to normal, and in one-third of the domains to above average compared to his peers. “Before the BFP I would forget what I was talking about,” he told me. “I was perpetually making lists. I knew there wasn’t anything I could do except watch it happen. I felt a mix of sadness, loss and grief. After the BFP, I noticed I wasn’t having trouble carrying on a coherent conversation. I wasn’t making as many lists. It was easier to get my key in the door, I wasn’t fumbling anymore. Now I feel more confident, I feel better.”

“The results are quite amazing,” Dr. Rourke says. “This kind of improvement is unprecedented. We are doing more case studies at our neurobehavioral unit with a view to an eventual trial.”

A work in progress

It’s been two years since I completed the BFP and my memory has started slipping a bit, so I’ve decided to do the program again. Although the results have been shown to last at least five years, some people choose to repeat it to keep themselves sharp. This time I did neuropsychological testing before starting, and it turns out that I am functioning much as I did seven years ago when I was last tested, before my memory started failing. I am looking forward to seeing how I perform after a refresher.

Besides that, I’ve started to do more things that stretch my brain, such as going to the museum, relearning a language and learning to play a musical instrument. I’m doing jigsaw puzzles and knitting and even brushing my teeth with my left hand. And I’m still trying to follow the Pritikin program as much as possible. Next up? I’m signing up for ballroom dancing, maybe the tango!

About the author: Maggie Atkinson is an AIDS activist, lawyer and long-term survivor with HIV/AIDS. Her motto in life is not “Why me?” but “What can I do about it?”

First Illustration © phil/www.i2iart.com

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Acronyms 

HAD – HIV-associated dementia

HAND – HIV-associated neurocognitive disorders

NCI – Neurocognitive impairment

Forget Me Nots: Dealing with the symptoms of NCI

Your doctor can refer you to rehabilitation experts, such as physical and occupational therapists, who can help you to deal with the effects of NCI on your daily functioning. I asked two professionals for their tips.

Sheila Thomas, occupational therapist at the Sherbourne Health Centre in Toronto, works one-on-one with PHAs: “It all depends on your needs and goals. Sometimes it’s a matter of creating a routine — always put keys in the same place, associate taking meds with certain things like getting up in the morning, plan to do recurring things on the same day of the week. It depends on how you take in information best. Some people do better with visual cues like Post-it notes, others with an auditory alarm such as a timer. Minimize distractions by not having the TV and radio on when you’re trying to talk to someone. Pace yourself throughout the week: Try to spread things out so you’re not doing everything at once. Leave yourself extra time. Electronic calendars and a cell phone or personal organizer with phone numbers in it can make life easier.”

Dr. Sean Rourke, a neuropsychologist, scientist and the director of research in the Mental Health Service at St. Michael’s Hospital in Toronto, notes that a diagnosis of mild neurocognitive disorder, though ­initially stressful, can be therapeutic. “In a way, it can be a relief to find out that you really do have a problem and it isn’t all in your imagination.” He suggests some compensatory strategies: “Lists, date books, use them strategically. You may need to write things down to crystallize them better. If you have short-term memory problems, take more time to prepare things, practice a few more times, write it down. Retrieval is often a problem with HIV. Don’t overdo it, but have the main concepts written down in front of you to rely on, to get back on track. You may need more time, and you may have to build in these pieces to compensate, but you can still do it well.”

Work Those Brain Cells!

Learning new things is highly valuable when it comes to your brain health. The best activities are progressively challenging, mentally rewarding, novel or surprising and demanding of focused attention. Here are some ways to exercise your brain:

• learn to play music
• learn a language
• do crossword puzzles (must be challenging) or jigsaw puzzles (more than 500 pieces)
• play ball or juggle
• crochet or knit
• use your “other” hand
• take dance lessons
• play bridge

This article by Renée Masching, Doris Peltier, Tracey Prentice and Randy Jackson  on behalf of CAAN first appeared in Prevention in Focus, a publication of CATIE. 

Une version française est disponible ici.

Within the Aboriginal community in Canada, HIV is having a profound impact on women and young people. This is a disturbing trend that requires a robust, immediate and ongoing response. This article emphasizes the importance of dedicated HIV prevention efforts to engage Aboriginal women as leaders and the community as a whole to meet the needs of women and maximize their health. We can and we must prevent new exposures to HIV and help prevent the too frequent rapid progression to AIDS for those living with HIV.

Background

According to 2006 Census results, close to 1.2 million people identify as First Nation, Inuit or Métis (Aboriginal), representing 3.8% of the population of Canada.1 Aboriginal Peoples share a common history of colonization and a common world view grounded in relationships with each other and the natural world; however, there is also great diversity from coast to coast to coast. We speak more than 55 languages in 11 major language groups;2 there are 615 formal First Nations bands, 2,284 reserves, 52 Inuit communities3 and countless Métis settlements. Just over half (51.2% or 600,700 of 1,172,790) of all people who self-identify as Aboriginal are female. In addition, almost half (48%) of the Aboriginal population in Canada is under the age of 24, compared with 31% of the general Canadian population.1 These numbers describe a small part of the diversity of the Aboriginal population in Canada. We have different traditions and ceremonies; we live differently in urban, rural and isolated settings; and when assessing the colonial impacts on health, our challenges (including access to health professionals and information) vary widely.4,5

While Aboriginal Peoples make up 3.8% of the population, we made up 8% of all people living with HIV and about 12.5% of all new HIV infections in Canada in 2008. Three decades into the HIV epidemic, Aboriginal women bear a disproportionate share of the burden of HIV infection. Between 1998 and 2008, women represented 48.8% of all positive HIV test reports among Aboriginal Peoples compared to only 20.6% of positive test reports among women of other ethnicities.6 It is essential to note that HIV statistics are not reported nationally from Ontario or Quebec, provinces with a high prevalence of HIV and where a significant proportion of the Aboriginal population reside.6

Rates of HIV infection among Aboriginal women continue to climb with new epidemics emerging in Saskatchewan7 and Manitoba.8 This reality affects all members of our communities, including Aboriginal men and the family unit as a whole.9 Given the young age of our population, the potential for women of childbearing age to be exposed to HIV is cause for concern.

Prevention in the Aboriginal community

We know that prevention within the Aboriginal community in Canada is most effective and realistic when it is community-driven and culturally sensitive.10 Successful prevention initiatives must:

1. engage community, including HIV-positive Aboriginal women, in the planning and delivery of programs and services
2. be holistic11 and recognize that our physical, mental, emotional and spiritual health are interconnected
3. respond to the unique needs of women
4. address the broader social determinants of health12 and, specifically, the determinants of Aboriginal people’s health13
5. address the root causes of risk-taking behaviours, not just risk behaviours themselves
6.  support the principle of self-determination and other principles laid out in the UN Declaration on the Rights of Indigenous Peoples

A holistic approach to HIV prevention is consistent with Aboriginal world views that perceive all peoples and all of creation to exist in relation to each other in a dynamic whole.14 When one part of the circle is unwell, the whole is weakened and becomes unwell. This principle infuses an understanding of good health for the individual and for the community.

The Aboriginal social determinants of health must be taken into consideration to contextualize Aboriginal realities. In addition to income security, employment, education, food and shelter, these include colonization, racism, social exclusion, self-determination and cultural continuity (the degree of social and cultural cohesion within a community).12,13 This approach shifts the focus of prevention initiatives in Aboriginal communities from individual behaviours, which run the risk of ‘blaming the victim,’ to structural determinants of health inequalities, which recognize the impact of socio-historical and political context in creating ‘risk environments’ that shape and constrain an individual’s behaviour.

Approaches that target early prevention by addressing the root causes of risk-taking behaviours15 that may occur later in life contribute to improving women’s overall well-being. The safety and well-being of girls and young women, growing up with strong role models and information to maintain good health, is central to our future. Research on sexual violence reveals connections between Aboriginal women’s early experiences of abuse and the ongoing cycle of violence that can lead to exposure to HIV,16 further emphasizing the benefits of early prevention interventions.

Prevention initiatives will have a greater impact if they aim to reduce potential harms and make activities safer—for example, promote safer sex as opposed to no sex; encourage people who use drugs to reduce their consumption rather than telling them to not use at all; and assess a community’s readiness to implement such an approach.17 (See CAAN's Assessing Community Readiness manual, workbook and poster.)

HIV prevention among Aboriginal women means preventing new exposures and preventing the rapid progression of the disease among those who are HIV-positive. This encourages women with HIV to attend to their own health and wellness, lowers the risk of being exposed to multiple strains of HIV and reduces the risk of passing HIV to others (this is known as positive prevention).

An emerging priority for engaging Aboriginal women in Canada is to emphasize the positive: both, people who are HIV-positive and a positive outlook that contributes to good health. Kecia Larkin, long-time Aboriginal AIDS activist identified the acronym PAW, for positive Aboriginal women, to capture this concept explicitly. PAW also has a strong cultural connotation as bears figure prominently in many Aboriginal cultures and in Aboriginal storytelling. Recent arts-informed research has shown that PAWsitive prevention that builds on the strengths that Aboriginal women already possess is meaningful, powerful and contributes to re-affirming the central role of women in the community.18 Consistent with this perspective, CAAN has taken action on the recommendations from the research report Our Search for Safe Spaces16 by developing a PAW-licy statement regarding the need to create safe spaces. Nurturing girls, looking after our women and engaging our men, youth and Elders in a healthy way are central to the prevention of HIV. 

Meaningful engagement of positive Aboriginal women (PAW) in prevention

These are some of the key elements and approaches that can help engage HIV-positive Aboriginal women in HIV prevention:

• Allow for the self-determination of positive Aboriginal women—“we know what we need”
• Share decision-making responsibilities with Aboriginal women
• Set ground rules when gathering, to help create a safe space
• Remember that positive Aboriginal women have a role as Inner Guides who share their lived experiences with women and girls ‘at risk’
• Consider using a sharing circle model for capacity-building, team-building, knowledge transfer and exchange of women’s teachings
• Use participatory approaches that engage Aboriginal women in meaningful ways
• Use and create opportunities for arts-based approaches to HIV prevention, such as drum-making, ceremonial skirt-making, photography and photovoice, quilt-making and digital storytelling
• Make gathering spaces as inclusive as possible, by creating spaces for the children of the women and attending to barriers to participation—for example, by providing adequate childcare monies when needed
• Recognize that women are part of a larger community and offer opportunities for women to learn alongside their families, partners and children
• Remember that all women are part of the circle: be inclusive of two-spirit, lesbian, bisexual and trans women
• Disseminate accessible information on HIV prevention to Aboriginal women and develop “positive messaging” for women and girls
• Honour the sacred role of Aboriginal women by acknowledging special events for women, creating an event to celebrate being a woman and learning about the traditional roles of women

Prevention in action

Increasingly, the activities undertaken by Aboriginal AIDS organizations are informed by research. In addition, we are driving our response to HIV with policy and strategic planning. The seminal document pulling all of this together is Environments of Nurturing Safety (EONS), produced by CAAN in consultation with more than 300 Aboriginal women across Canada.19 EONS offers context and history, identifies the needs of Aboriginal women and outlines a five-year strategy to address those needs.

In partnership with the Native Women's Association of Canada, CAAN’s PAW-licy statement informs the creation of safe spaces, such as “PAW Dens.” The statement is designed so that an organization can easily adapt the policy and endorse it, to demonstrate their support and commitment. At the heart of the policy, “CAAN recommends the creation of environments where PAW can thrive; nurturing spaces to address the impact of trauma and violence. Together, men, women, children, and Elders can all support PAW and their children in every region of Turtle Island.”

A robust HIV prevention campaign must take into consideration that infrastructures within Aboriginal communities and Aboriginal organizations are limited. Oftentimes, Aboriginal people reside outside of major urban centres, which limits our access to healthcare services and places additional demands on organizations to provide resources and outreach services, ranging from education sessions to support. Strong partnerships with organizations that share similar mandates and the incorporation of HIV messaging in creative ways across diverse sectors will increase the visibility of HIV prevention. Increased and sustained investments in relational care-building relationships with Aboriginal people living with HIV and AIDS and their communities will result in improving health.20

Conclusion

In 2011, the theme for Aboriginal AIDS Awareness Week (December 1 -5) was “It takes a whole community to support change.” Each individual, family, community and Nation can make a difference. Prevention is grounded in grassroots actions supported by policy and the direct engagement of leaders. Aboriginal women are the caregivers for their families and for their communities. How we respond to our women underpins how our communities will function. Learning about HIV risk, learning about risk reduction and examining how actions are contextualized and labelled will contribute to reducing risk by nurturing understanding and reducing HIV stigma. Allies, non-Aboriginal individuals and organizations, can contribute to the response. There is an incredible capacity for all of us to respond in simple ways and in a larger context through services and policies.

References

1. a. b. Statistics Canada. Aboriginal Peoples in Canada in 2006: Inuit, Métis and First Nations, 2006 Census. Ottawa: Minister of Industry, Statistics Canada, 2008. Available from: www12.statcan.ca/census-recensement/2006/as-sa/97-558/pdf/97-558-XIE2006001.pdf

2. Norris MJ. Aboriginal languages in Canada: emerging trends and perspectives on second language acquisition Canada's Aboriginal Languages. In: Canadian Social Trends. Ottawa: Statistics Canada. Summer 2007, Catalogue No. 11-008; 19-27.

3. Kirmayer LJ, Tait CL, Simpson C. The mental health of Aboriginal Peoples in Canada: transformations of identity and community. In: Kirmayer LJ, Valaskakis GG, editors. Healing traditions: the mental health of Aboriginal peoples in Canada. Van­couver, BC: University of British Columbia Press; 2009.

4. Jacklin K. Diversity within: deconstructing Aboriginal community health in Wikwemikong Unceded Indian Reserve.

5. Battiste M. Research ethics for protecting Indigenous knowledge and heritage: institutional and reseacher responsibilities. In Denzin NK, Lincoln YS,Smith LT, editors. Handbook of critical and Indigenous methodologies. Thousand Oaks, California: Sage Publications; 2008; 497-509.

6. a. b. Public Health Agency of Canada. HIV/AIDS Epi Update. Ottawa, Ontario: Public Health Agency of Canada (PHAC); 2010.

7. Saskatchewan Ministry of Health. Saskatchewan’s HIV Strategy 2010-2014. November 2010. Available from: http://www.health.gov.sk.ca/hiv-strategy-2010-2014

8. Manitoba Health. Statistical Update: HIV and AIDS. Report to December 31, 2010. Available from: www.gov.mb.ca/health/publichealth/surveillance/hivaids/dec2010.pdf

9. Peltier D, Jackson R, Prentice T, Masching R et al. When women pick up their bundles: HIV prevention and related service needs of Aboriginal women in Canada. In: Gahagan J, editor. Women and HIV in Canada: implications for research, policy and practice. Toronto: Canadian Scholars’ Press (In press).

10. Gahagan J, Ricci C. HIV/AIDS prevention for women in Canada: a meta-ethnographic synthesis. Available from: www.cpha.ca/uploads/progs/infectious/t0049_e.pdf

11. Walters KL, Simoni JM. Reconceptualizing Native women's health: an "indigenist" stress-coping model. American Journal of Public Health. 2002 April;92(4),520-4.

12. a. b. Symlie J. The Health of Aboriginal People. In: Raphael D, editor. Social determinants of health: Canadian perspectives, 2nd edition. Toronto: Canadian Scholars' Press; 2009.

13. a. b. Loppie Reading C, Wein F. Health inequalities and social determinants of Aboriginal Peoples’ health. Prince George, British Columbia: National Collaborating Centre for Aboriginal Health; 2009. Available from: www.nccah-ccnsa.ca/docs/social%20determinates/NCCAH-Loppie-Wien_Report.pdf

14. King G, Smith A,Gracey M. Indigenous health part 2: the underlying causes of the health gap. The Lancet. 2009 Jul; 374(9683),76-85.

15. Mill J. HIV risk behaviors become survival techniques for Aboriginal women. Western Journal of Nursing Research. 1997 Aug;19(4), 466-89.

16. a. b. Hawkins K, Reading C,Barlow K. Our search for safe spaces: a qualitative study of the role of sexual violence in the lives of Aboriginal women living with HIV/AIDS. Ottawa, Ontario: Canadian Aboriginal AIDS Network; 2009.

17. CAAN. Assessing Community Readiness and Implementing Risk Reduction Strategies. Halifax, Nova Scotia: Canadian Aboriginal AIDS Network; 2011.

18. Visioning Health Research Team. Visioning Health: Positive Aboriginal Women’s (PAWs) Perspectives on Health, Culture and Gender. Saskatchewan AIDS Conference, Regina, Saskatchewan, Dec 1-2, 2011.

19. Peltier D. Environments of nurturing safety (EONS): Aboriginal women in Canada: five year strategy on HIV and AIDS. Dec 2010-Dec 2015. Canadian Aboriginal AIDS Network; Dec 2010.

20. CAAN. Relational Care: A guide to health care and support for Aboriginal People living with HIV/AIDS. Ottawa, Ontario: Canadian Aboriginal AIDS Network; 2008.

About the author: The Canadian Aboriginal AIDS Network (CAAN) is one of the organizations involved in leading a community-driven response to HIV and AIDS. Our work is guided by our membership and supported by a network of partnerships with organizations operating at grassroots through to the national level across the country. CAAN is involved in many campaigns and, with our allies, we have developed and contributed towards high-quality, strategic initiatives to prevent HIV infection within our communities.

Interviews by James Wilton: This article first appeared in Prevention in Focus, a publication of CATIE.

Une version française est disponible ici. 

We asked three people about the challenges of explaining risk to their clients and patients.

Jody Jollimore—Program Manager, Health Initiative for Men, Vancouver

Riyas Fadel—M.A. candidate, Sexology, Université du Québec à Montréal

Mona Loutfy—Infectious Diseases Specialist, Women's College Hospital; Research Director, Maple Leaf Medical Clinic; Associate professor, University of Toronto

Jody Jollimore

What are the major challenges in communicating risk?

The overarching challenge is how to communicate risk without confusing or discouraging people.

One challenge is trying to communicate risk without putting a number on it. The public often wants risk to be communicated as a percentage (such as 2%) or a ratio (such as a 1 in 50 probability of HIV transmission). However, it’s very difficult to communicate risk as a number and these ratios can easily be misunderstood. For example, a person could understand this ratio to mean that they can have anal sex without a condom 50 times before they get HIV when, in fact, they could be the guy who does it once and gets HIV or the guy who does it 600 times and doesn’t get HIV.

Another challenge is how to communicate the many variables that need to be considered, such as the viral load of the HIV-positive partner, whether either partner has sexually transmitted infections (STIs), the window period, how often someone is getting tested, and how much one partner trusts the other(s). All these things can affect transmission significantly but are not easily measured or quantified. The information is complicated and can discourage someone from trying to reduce their risk.

What are the limitations of current approaches to communicating risk?

Most current models for communicating risk group activities into “low-risk” and “high-risk” categories. For example, unprotected oral sex and protected anal sex are normally considered low-risk and all unprotected anal sex is assigned to the high-risk category. However, at the Health Initiative for Men, we don’t think this approach is nuanced enough to reflect the recent research or the complex and exciting sex lives of gay men. Gay guys know that risk is more than just “low” or “high” and that other variables can influence their risk of HIV transmission. We feel that this approach doesn’t give guys a lot of options to choose from to reduce their risk. Not all guys are able, or want, to reduce their risk by engaging in “low-risk” activities and not all unprotected anal sex is the same.   

What are your solutions?

At HIM we have developed a risk communication model that includes a risk calculator—it can be found on our “Do the Math: Calculate Your Risk” website. We opted to expand the “low-risk” and “high-risk” model to include more categories, including “no or very low,” “low,” “moderate,” “high” and “very high” risk. The model uses several factors to assess risk, including the type of sex they are having (oral or anal), the position they are assuming (top or bottom), the HIV status of both partners (poz, neg or unknown) and whether condoms are used. Using the statistics from the ManCount survey, we felt that these were the variables that gay men were most commonly using to make decisions and also those that people know the most about.

This approach gives gay men more options to reduce their risk. Instead of simply telling people that all unprotected anal sex is high-risk, we opted to say that it is more risky than oral sex and protected anal sex, but less risky if you are a top or with a same-status partner.

Our model doesn’t provide numbers, but it is based on absolute risk percentages calculated in a mathematical modelling study titled “Reducing the risk of sexual HIV transmission: quantifying the per-act risk for HIV on the basis of choice of partner, sex act, and condom use” (Varghese et al 2001), published in the journal Sexually Transmitted Diseases. The numbers in this study informed our “Do the Math” model and were used to assign different activities to a risk category.

We didn’t provide the numbers from this study in our model because we don’t feel that communicating risk as percentages and ratios is the most effective way of translating probability information to the average gay guy. Even those of us who are well versed in statistics can struggle to understand them, specifically the difference between absolute risk and relative risk and how the two can interact. You can look at the numbers but the more you look into all the factors used to calculate them, the more you realize how far from reality they are and how they have little meaning in the “real world.”

What are the limitations of your approach?

The main weakness of our model is its simplicity. Although it is more nuanced than other models, it doesn’t consider factors such as antiretroviral treatment, acute HIV infection, STIs, dates of testing, and trust. These factors were difficult to integrate into the calculator for various reasons.

In the case of viral load, there are still gaps in the research, particularly among gay men, and the messages are different depending on the context (for example for poz guys vs. neg guys, gay guys who go the bathhouse vs. guys in monogamous serodiscordant relationships). Since these factors need a more detailed explanation and there is no simple message that applies to everyone, they are discussed at length in the text on the website but were not integrated into our risk calculator.  

In the end, the risk calculator was a bit of a compromise. We asked ourselves “Do we want to get something out there or produce nothing because it’s too complicated?” We opted to take on the challenge and start a community dialogue about risk.

Riyas Fadel

In your experience, how do different people understand risk differently and how does this affect the choices they make?

People understand risk subjectively and this makes it a challenge to explain and communicate risk.

Frontline workers tend to use categories such as “high-risk,” “low-risk” and “negligible risk” to assess a person’s risk of HIV transmission. However, people understand these categories in different ways. For one person “high-risk” might be unprotected oral sex and for another person “high-risk” is unprotected anal sex. It’s all subjective and often depends on whether the person is more cautious in general or more of a risk-taker.

What I find interesting is that a person’s view of risk is not set in stone, it can change based on their personal experiences with risk. For example, if a person remains uninfected after engaging in activities they consider high-risk, their idea of what is risky may change. On the other hand, if a person engages in what they consider a low-risk activity and becomes infected, then their perception may change in the opposite way. This works the same with other types of “risk,” for example, driving fast.

How a person feels about the consequences of taking risks also plays a big role in how a person evaluates risk. Some people may not be concerned about becoming infected with a sexually transmitted infection because they figure that treatment is available, whereas others are very concerned.

Also, some people place a greater value on taking risks than others. We live in a society where it’s not uncommon for people to have a “no risk, no gain” attitude. For a long time research used the term “sensation-seeking” to characterize some gay men’s risk-taking profiles. These are men who go to bathhouses, raves and parties, do drugs and have multiple partners—all stuff based on sensation. Some of them seek out certain types of activities, which can include unprotected sex, because it has a certain meaning for them.  

However, I have met a lot of “sensation seekers” who always use condoms or other prevention strategies and have a very good “sexual health” approach to their safer sex practices, so these categories aren’t always useful and can be stigmatizing. We need to figure out what’s going on with someone instead of simply labelling them. As frontline workers, our approach should be focused on a person’s overall sexual health and how they can adopt, and maintain, strategies that help them reach their goals.

We now have a much better understanding of the biology of HIV transmission. How has new research made communicating risk more challenging?

The new research has complicated things in some ways. We have learned a lot about the dynamics of HIV transmission and, at the same time, about how we need to do a better job of explaining the research to clients. Communicating risk was already complicated and it’s only getting more complicated with all the relative risk numbers and statistics emerging from the research on treatment as prevention, post-exposure prophylaxis, pre-exposure prophylaxis and microbicides.

The new research can make frontline workers uneasy because the condom message was so simple and now the messages are so much more complex. Clients are learning about the research from a variety of sources and asking very specific questions, such as: “If being on treatment and having an undetectable viral load reduces the risk of HIV transmission by 96% and condoms reduce the risk by 98%, then is being on treatment only 2% worse than condoms?” Frontline workers are having to unpack this information with clients and it’s challenging.

While things are getting more complicated, it’s also a very exciting time to be working in HIV prevention. We now have a much larger box of prevention tools to discuss with clients.

How do you help a client assess their risk and develop safer sex strategies?

When frontline workers use statistics, they need to be very clear about what the numbers mean. Numbers can be a great tool to help people conceptualize risk but can also be very confusing. Every time I give a number or a statistic from a study, such as a 96% risk reduction or a 3% risk of transmission per act, I always contextualize it and ensure that people understand how these numbers were calculated and what they mean. When I do this, many clients realize that numbers are not really the answer they are looking for.

I also find it interesting and useful to explore the client’s perceptions of risk. I start by asking a client about a sexual activity and ask them to place it somewhere on a risk continuum. Next, I ask the client about the sexual activities they engage in and whether they consider them more or less risky than those already on the continuum. I find that this approach works well because it gives the client a clearer picture of what relative risk is and how different activities relate to each other.

Also, as much as a person understands the risks and doesn’t want to become infected, there is a point before or during a sex act when people sometimes don’t put into practice what they know or what they planned to do. We focus too much on saying “use a condom” or “you have the data, you should know better” and don’t talk enough about the context or the structures someone has to navigate to put what they know into practice.

When I did outreach work helping people evaluate risks and develop a strategy for safer sex practices, I would ask clients to make a list of things they like to do sexually and the context in which they would happen. We would then explore how they try to reduce their risk and how that changes depending on the context. I would also ask them about things they really want to do but have never done and things they have never done and would never do. The goal of these exercises is to prepare clients to negotiate safer sex in different contexts.

Dr. Mona Loutfy

Can you tell me a bit about the situations in which you counsel patients about risk? And how do those situations differ from one another?

As a physician, I counsel individuals and couples who are sexually active and considering unprotected sex, for example, serodiscordant couples that want to conceive, or same sex male couples considering unprotected sex. I also counsel sexual assault victims who are considering taking HIV post-exposure prophylaxis (PEP).

Assessing HIV risk in the context of sexual assault can be more challenging than the consensual sex situation because there are often more unknown risk factors and variables. For example, the HIV status of the assailant may be unknown to the victim. If the assailant is known to be HIV-positive, it’s difficult to know if they were on treatment and had a fully suppressed viral load.

These unknowns need to be built into the risk assessment. If the HIV status is unknown, then we refer to the prevalence rate of HIV in the community of that area. For example, in the case of men between the ages of 19 and 50 in Toronto, the prevalence rate is 1%. The risk that the assailant was HIV-positive can then be multiplied by the risk posed by the kind of sexual act involved (receptive or insertive anal, vaginal or oral sex). Other risk factors that need to be considered include whether there were any STIs and whether there was any bleeding or tearing.

If the sex was consensual , then more of the risk factors are known. If I am counselling a serodiscordant couple that wants to conceive, I generally know the HIV status of both partners, whether there are any STIs, and the viral load of the HIV-positive partner. I frequently counsel serodiscordant couples on safer conception and how being on treatment and having a fully suppressed viral load can reduce the risk of HIV transmission through unprotected sex.

How do you communicate the risk of HIV transmission when the viral load is undetectable?

In the context of undetectable viral load, I go through the data and explain the Swiss Statement as well as the findings from the HPTN 052 study and from other cohort studies. I tell them that I can’t say there is zero risk when the viral load is undetectable, but that if you look at the studies among serodiscordant couples where the HIV-positive partner meets the conditions set out in the Swiss Statement, there have been no documented HIV transmissions.

Unfortunately, all these studies were done among heterosexual couples and therefore we don’t know how much these research findings apply to same-sex male couples. I tell same-sex couples that the data likely transfers to some degree, but trauma and tearing is more common with anal sex and can increase the risk.

When counselling, I use qualitative expressions to describe risk—for example, I say the risk is “very very low” when the viral load is undetectable and the couple is heterosexual. I don’t usually use numbers because we don’t necessarily know what the numbers mean, particularly for same-sex male couples. I also tend to avoid talking about relative risk because I don’t think the average person understands this concept very well.

We now have a much better understanding of the biology of HIV transmission. How has this research changed your approach to communicating risk?

I am fairly conservative about risk as a result of my personality and my role as a healthcare provider. However, with the new research on viral load and HIV transmission, I am relaxing a bit in my counselling. Instead of recommending that couples always use condoms, there are certain situations in which I can tell couples that the risk of HIV transmission is very low without condoms.

We have so much more data out there now, which is great and it has made things easier in some ways for counselling. However, with every additional study that comes out, we have more answers but also more questions. We will never know everything and there will always be some unknowns.

What are some of the tools you use to help someone assess their risk?

Regardless of the situation, I always start my counselling by saying that we are going to talk about probabilities and that it’s very hard to ever say that there is “no risk” of transmission. For most people, risk can be a hard concept to wrap their head around.

The two major things I do to help people understand their risk and make informed decisions are to make sure I take the time with the clients and make sure that I know the data. I try to book longer appointments for counselling sessions or make sure that I schedule them at the end of the day, so that we don’t have a restricted amount of time. It’s important to take the time to answer a client’s questions until they don’t have any more.

It’s also important to know the data very well so I can answer all these questions. I conduct some of the research myself so I can say I really know the data. For example, I recently led a research team in a systematic review of the evidence to better understand the risk of HIV transmission when the viral load of the HIV-positive partner is undetectable. This review has been submitted to a peer-reviewed journal for publication.

Another study we are currently conducting is called the Ontario HIV Pre-Conception Cohort Study. We are enrolling HIV-positive individuals who are interested in getting pregnant or parenting, with or without partners. Part of this study is aimed at gaining a better understanding of how people conceptualize risk and what risks they are willing to take.

Related article

To read the feature article on communicating risk, see Certainly uncertain: Challenges in communicating HIV risk.

About the author

James Wilton is the Project Coordinator of the Biomedical Science of HIV Prevention Project at CATIE. James has an undergraduate degree in Microbiology and Immunology from the University of British Columbia.

This article by James Wilton first appeared in Prevention in Focus, a publication of CATIE.

Une version française est disponible ici. 

Service providers working in HIV prevention are often asked by their patients and clients about the risk of HIV transmission from an exposure to HIV through sex. What do the latest studies tell us about this risk? And how should we interpret and communicate the results?

Challenges in calculating a number

It isn’t easy for researchers to calculate the risk of transmission from an exposure to HIV through sex. To do this effectively, a group of HIV-negative individuals need to be followed over time and their exposures to HIV—both the number of times they are exposed and the types of exposure—need to be tracked.  

As you can imagine, accurately tracking the number of times a person is exposed to HIV is very difficult. Researchers ask HIV-negative individuals enrolled in these studies to report how many times they have had sex in a given period of time, what type of sex they had, how often they used condoms and the HIV status of their partner(s). Because a person may have trouble remembering their sexual behaviour or may not want to tell the whole truth, this reporting is often inaccurate.

Furthermore, a person does not always know the HIV status of their partner(s). For this reason, researchers usually enroll HIV-negative individuals who are in stable relationships with an HIV-positive partner (also known as serodiscordant couples). Researchers can then conclude that any unprotected sex reported by a study participant counts as an exposure to HIV.

Several studies have aimed to estimate the average risk of HIV transmission from a specific type of unprotected sex (for example, vaginal/anal/oral; insertive/receptive). Due to the difficulties of calculating this risk, these studies have produced a wide range of numbers. To come up with a more accurate estimate for each type of unprotected sex, some researchers have combined the results of individual studies into what is known as a meta-analysis.

All exposures are not equal

The results of several meta-analyses suggest that some types of sex carry on average a higher risk of HIV transmission than others. Below are estimates from meta-analyses that have combined the results of studies conducted in high-income countries. For types of sex where meta-analysis estimates do not exist, numbers from individual studies are provided.

Anal sex 

A meta-analysis exploring the risk of HIV transmission through unprotected anal sex was published in 2010.1 The analysis, based on the results of four studies, estimated the risk through receptive anal sex (receiving the penis into the anus, also known as bottoming) to be 1.4%. (This means that an average of one transmission occurred for every 71 exposures.) This risk was similar regardless of whether the receptive partner was a man or woman.

No meta-analysis estimates currently exist for insertive anal sex (inserting the penis into the anus, also known as topping) but two individual studies were conducted to calculate this risk. The first, published in 1999, calculated the risk to be 0.06% (equivalent to one transmission per 1,667 exposures).2 However, due to the design of the study, this number likely underestimated the risk of HIV transmission. The second study, published in 2010, was better designed and estimated the risk to be 0.11% (or 1 transmission per 909 exposures) for circumcised men and 0.62% (1 transmission per 161 exposures) for uncircumcised men.3

Vaginal sex

A meta-analysis of 10 studies exploring the risk of transmission through vaginal sex was published in 2009.4 It estimated the risk of HIV transmission through receptive vaginal sex (receiving the penis in the vagina) to be 0.08% (equivalent to 1 transmission per 1,250 exposures).

A meta-analysis of three studies exploring the risk from insertive vaginal sex (inserting the penis into the vagina) was estimated to be 0.04% (equivalent to 1 transmission per 2,500 exposures).4

Oral sex

No meta-analysis estimates exist for oral sex (vaginal or penile) because too few good-quality studies have been completed. This is because it is difficult to find people whose only risk of HIV transmission is unprotected oral sex. A review of the studies that are available was published in 2008 and concluded that vaginal and penile oral sex pose a “low but non-zero transmission probability.”5

In the three studies aimed at calculating the risk of HIV transmission from one act of oral sex, no transmissions were observed among three different populations—lesbian serodiscordant couples, heterosexual serodiscordant couples and single gay men—who reported unprotected oral sex as their only risk for HIV transmission. However, these studies enrolled only a small number of people and followed them for only a short period of time, which may explain the lack of HIV transmissions and makes it impossible to conclude that the risk from oral sex is zero.

Interpreting the numbers—what additional information needs to be provided? 

Some clients may see these numbers and think their risk of HIV transmission is low. Therefore, caution is needed when interpreting them. If these numbers are provided to clients, they should be accompanied by information that helps shed light on why the risk may be higher than it seems. 

Transmission can occur after one exposure.

It is important to emphasize that a person could become infected from having unprotected sex once or a person could have unprotected sex many times and not become infected, regardless of how low or high the risk per exposure is.

A risk of 1% would mean that an average of one infection would occur if 100 HIV-negative people were exposed to HIV through a certain type of sex. It does not mean that a person needs to be exposed 100 times for HIV infection to occur.

These are estimates of average risk in the absence of biological factors that increase risk.

The numbers in the table above are rough estimates. They are averages and do not represent the risk from all exposures to HIV through a certain type of sex.

We know that no two exposures to HIV are exactly the same. Research shows that, in addition to the type of sex that led to the exposure, several factors can increase or decrease the risk that an exposure to HIV leads to infection. These include the presence of sexually transmitted infections (STIs), a high viral load, a man being uncircumcised, a woman menstruating, other bleeding and activities that can cause tearing and inflammation, such as rough sex, longer sex, douching, enemas before anal sex, and tooth brushing, flossing or dental work before oral sex. Each exposure to HIV carries a unique risk of transmission that depends on the type of sex and a combination of biological factors.

The risk of HIV transmission may be much higher than these averages if biological risk factors are present. For example, research shows that STIs and some vaginal conditions, such as bacterial vaginosis, can increase the risk of HIV transmission by up to 8 times.6,7,8 As a result, the risk of an HIV-negative woman becoming infected through unprotected receptive vaginal sex could be closer to 1% (1 transmission per 100 exposures) if she has a vaginal STI.  

We also know that for every 10-fold increase in viral load, the risk of HIV transmission increases by 2 to 3 times.9,10 Research suggests the extremely high viral load during acute HIV infection (the first few weeks after becoming infected with HIV) can increase the risk of HIV transmission by up to 26-fold.11,12 Therefore, unprotected sex with an HIV-positive person who has acute HIV infection could carry a transmission risk of up to 2% (the equivalent of 1 transmission per 50 exposures) for receptive vaginal sex and over 20% (equivalent to 1 transmission per 5 exposures) for receptive anal sex.

The more exposures, the greater the risk.

Although the risk of HIV transmission from a single exposure may seem low to some people, this risk increases over multiple exposures. In other words, a person who is exposed to HIV more often has a greater overall risk of HIV transmission than someone who is exposed less often.

If a woman has unprotected vaginal sex 100 times with a man who is HIV-positive, the cumulative risk is approximately 10% and may be higher if biological risk factors are present.

Differences in risk

Information on how risky certain types of unprotected sex are compared to others may help people make more informed decisions about the type of sex they are having.

Based on the meta-analysis estimates, we can draw several conclusions

• Receptive anal sex carries a much higher risk of HIV infection than receptive vaginal sex. Research shows that the risk of HIV transmission from receptive anal sex is up to 18 times higher than from receptive vaginal sex.
• Receptive anal sex is riskier than insertive anal sex. Research suggests the risk of HIV transmission from receptive anal sex is 3 to 23 times higher than from insertive anal sex.
• Receptive vaginal sex is riskier than insertive vaginal sex.The risk from receptive vaginal sex is about twice as high as that from insertive vaginal sex.
• It is unclear exactly how much less risky oral sex is compared to vaginal and anal sex.

Conclusion

Although it’s impossible to provide a client with their exact risk of HIV transmission from an exposure, some studies have managed to estimate an average risk for different types of sex. It's important to provide clients with additional information to help them interpret the findings. Here are some key messages:

1. These numbers are

• challenging to calculate and should therefore be considered rough estimates
• do not represent the risk of transmission from all exposures to HIV
• represent the average risk of transmission in the absence of biological factors that can increase risk (such as STIs and a high viral load)
• are most relevant to people in stable monogamous serodiscordant relationships

2. These numbers may seem low but

• HIV transmission can occur after a single exposure
• the risk may be much higher if certain biological risk factors, such as STIs or a high viral load, are present
• as more exposures to HIV occur, the overall risk of transmission increases
• most HIV transmissions in Canada occur through unprotected anal and vaginal sex

3. There are several ways of reducing the risk of HIV transmission from an exposure, such as post-exposure prophylaxis (PEP), using antiretroviral treatment to reduce viral load, circumcision, treatment for STIs and vaginal conditions, or engaging in lower-risk activities.

4. There is no way to reduce the risk of HIV transmission to zero after an exposure occurs. Taking measures to avoid an exposure in the first place (for example, through the correct use of condoms or other barrier methods, or by ensuring a partner has the same HIV status) can help reduce the overall risk of HIV transmission.

References

 1. Baggaley RF, White RG, Boily M-C. HIV transmission risk through anal intercourse: systematic review, meta-analysis and implications for HIV prevention. International Journal of Epidemiology. 2010 Aug;39(4):1048–63.

 2. Vittinghoff E, Douglas J, Judson F et al. Per-contact risk of human immunodeficiency virus transmission between male sexual partners. American Journal of Epidemiology. 1999 Aug 1;150(3):306–11.

 3. Jin F, Jansson J, Law M et al. Per-contact probability of HIV transmission in homosexual men in Sydney in the era of HAART. AIDS. 2010 Mar 27;24(6):907–13.

4. a. b. Boily M-C, Baggaley RF, Wang L et al. Heterosexual risk of HIV-1 infection per sexual act: systematic review and meta-analysis of observational studies. Lancet Infectious Diseases. 2009 Feb;9(2):118–29.

 5. Baggaley RF, White RG, Boily M-C. Systematic review of orogenital HIV-1 transmission probabilities. International Journal of Epidemiology. 2008 Dec;37(6):1255–65.

 6. Ward H, Rönn M. Contribution of sexually transmitted infections to the sexual transmission of HIV. Current Opinion in HIV and AIDS. 2010 Jul;5(4):305–10.

7. Atashili J, Poole C, Ndumbe PM et al. Bacterial vaginosis and HIV acquisition: a meta-analysis of published studies. AIDS. 2008 Jul 31;22(12):1493–501.

 8. Cohen CR, Lingappa JR, Baeten JM et al. Bacterial vaginosis associated with increased risk of female-to-male HIV-1 transmission: a prospective cohort analysis among African couples. PLoS Medicine. 2012 Jun;9(6):e1001251.

9. Wawer MJ, Gray RH, Sewankambo NK et al. Rates of HIV-1 transmission per coital act, by stage of HIV-1 infection, in Rakai, Uganda. Journal of Infectious Diseases. 2005 May 1;191(9):1403–9.

10. Baeten JM, Kahle E, Lingappa JR et al. Genital HIV-1 RNA predicts risk of heterosexual HIV-1 transmission. Science Translational Medicine. 2011 Apr 6;3(77):77ra29.

 11. Wawer MJ, Gray RH, Sewankambo NK et al. Rates of HIV-1 transmission per coital act, by stage of HIV-1 infection, in Rakai, Uganda. Journal of Infectious Diseases. 2005 May 1;191(9):1403–9.

 12. Hollingsworth TD, Anderson RM, Fraser C. HIV-1 transmission, by stage of infection. Journal of Infectious Diseases. 2008 Sep 1;198(5):687–93.

 About the author

James Wilton is the Project Coordinator of the Biomedical Science of HIV Prevention Project at CATIE. James has an undergraduate degree in Microbiology and Immunology from the University of British Columbia.

This article by James Wilton first appeared in Prevention in Focus , a publication of CATIE.

Une version française est disponible ici. 

Clients often want to know how great their risk of becoming infected with HIV or transmitting HIV is and how effectively different strategies can reduce this risk. Answering these questions in a way that is meaningful to clients can be complex and challenging. Frontline HIV prevention workers need to have a solid understanding of risk and how to help clients assess their risk in order to prevent new HIV transmissions.

What is risk? how can it be communicated? and why is it important?

Risk tells us about the possibility of harm. In the context of HIV prevention, it refers to the chance that specific activities or actions will result in HIV transmission.

Risk can generally be communicated to clients in two ways:

1. as a numerical expression. For example, the average risk of HIV transmission during one act of unprotected receptive anal sex is 1.4%; or antiretroviral treatment can reduce the risk of heterosexual HIV transmission by up to 96%.

2. as a qualitative expression. For example, the risk of HIV transmission during unprotected receptive anal sex is “very high”; or antiretroviral treatment can be “highly effective” at reducing the risk of heterosexual HIV transmission.

Accurately assessing and communicating risk is important because a client’s perceived risk of HIV transmission plays a major role in determining whether or not they will take measures to reduce their risk (by, for example, using condoms). Other factors that come into play when people make decisions about what precautions they will or will not take include how much they want to avoid HIV transmission and how much they feel unprotected sex increases their sense of pleasure and intimacy.   

Risk and its many shades of grey

Risk is all about uncertainty. If a specific outcome is certain—0% or 100%—then no risk is involved. People often feel comfortable with certainties but with risk there are none.

When it comes to HIV transmission, uncertainties are unavoidable. Completely eliminating one’s risk of HIV transmission is not possible for many individuals because few sexual activities carry no risk of HIV transmission and few prevention strategies are 100% effective. At the same time, no activities carry a 100% chance of HIV transmission.

To complicate matters, people often have difficulty understanding probabilities and may interpret them in different ways. For example, “1.4%” or “high-risk” can mean different things to different people.

In addition, each individual has a different level of risk they are willing to take, which is often influenced by their attitudes and beliefs regarding risk, HIV and pleasure. Some people are more comfortable with a certain level of risk while others are more averse to taking risks.

Also, many factors and variables influence a person’s risk of HIV transmission, including the viral load of the HIV-positive partner, the kind of sex they are having (anal, vaginal or oral), whether he or she is the insertive or receptive partner, whether either partner has a sexually transmitted infection (STI), and any tearing and inflammation at the mucous membranes. As a result, every client’s risk of HIV transmission is unique. The more factors that are taken into account, the more accurate the risk estimate will be. Unfortunately, we don’t always know how much each one impacts a person’s overall risk of HIV transmission. Consequently, measures of risk tend to be generalizations and are always “best guesses.”

A tale of two risks: absolute and relative

Clients generally want to know two things about their risk:

 1. their risk of becoming infected with HIV or transmitting HIV (also known as their absolute risk); and

 2. how much a risk factor or prevention strategy can change their risk (also known as relative risk).

Exploring absolute risk

Absolute risk can refer to risk from one specific exposure or it can refer to the risk of transmission over a given period of time.

Risk from a single act

Because the risk of HIV transmission from an act of unprotected sex depends on a wide range of factors, it is difficult to estimate and assess someone’s individual risk. Some researchers have managed to estimate the average risk of HIV transmission from an exposure to HIV through specific types of sex.1,2 For example, the average risk of HIV transmission through one act of unprotected receptive anal sex with a person who is HIV-positive has been estimated to be 1.4%.

It is not easy for a person to use these numbers to assess their personal risk. It’s important to keep in mind that regardless of how low a percentage may seem, transmission can occur after a single exposure to HIV. Also, these numbers do not represent the risk from all exposures to HIV; they represent the average risk of HIV transmission in the absence of biological factors (such as other STIs and a high viral load) that can increase risk.

Many frontline service providers and transmission guidelines use qualitative expressions, such as “high-risk” or “low-risk,” to describe the level of risk associated with different activities. For example, the HIV Transmission Guidelines for Assessing Risk published by the Canadian AIDS Society (CAS) assign activities to one of four categories (no risk, negligible risk, low risk or high risk) based on two criteria: whether there is a potential risk of transmission and whether there is evidence of transmission. Qualitative expressions can be easier to communicate than numerical expressions and may reflect the risk of HIV transmission in a way that is more meaningful to the client.   

However, the use of qualitative expressions has its disadvantages:

 • Expressions such as “high-risk” and “low-risk” can be open to interpretation unless the criteria used to assign an activity to a category are clearly explained. 

 • These expressions don’t tell a client how high or low the risk is. 

 • Grouping multiple activities into a single risk category may not reflect some of the important differences in risk between activities within a category. For example, all types of unprotected anal and vaginal sex are normally considered high-risk activities but research shows that unprotected receptive anal sex carries a higher risk of HIV transmission than other types of unprotected vaginal and anal sex. 

 • This approach focuses on the activity that led to the exposure and often ignores biological factors, such as viral load, that can significantly increase or decrease the risk of HIV transmission. For example, clients may want to know if unprotected vaginal and anal sex are still high-risk activities when the viral load is undetectable.

Discussing with clients the absolute risk from an exposure to HIV may help them assess their risk and adopt strategies to reduce it (such as using condoms, lubrication, engaging in less risky types of sex, reducing their—or their partner’s—viral load, treating STIs, or using post-exposure prophylaxis.)

Risk over time

Similar to the risk of HIV transmission from a specific exposure, the risk over a given period of time is also unique to each individual. This risk depends on how many times a person is exposed to HIV—which, in turn, depends on how often a person is having sex, the chances that their partner(s) have a different HIV status than them, how consistently and correctly they are using condoms—and the unique transmission risk from each exposure that does occur.

In HIV prevention, risk assessments tend to focus on a client’s risk from a single exposure to HIV and not their risk over time. This may lead people to underestimate their risk because risks that may be considered small in the short term can accumulate and became large in the long term. In other words, a client’s overall probability of HIV transmission increases the more they are exposed to HIV (a concept known as cumulative risk).

For example, the average risk of HIV transmission from one act of unprotected vaginal sex is estimated to be 0.1%. Although a client may consider this risk to be low, this risk will grow if they continue to have unprotected vaginal sex. After 100 exposures through unprotected vaginal sex, the cumulative risk of HIV transmission becomes approximately 10%. This risk could be even higher if certain biological risk factors are present, for example, if one partner has an STI or if the HIV-positive partner has a high viral load.

Exploring relative risk

Relative risk tells us about how much something, such as a risk factor or prevention strategy, can change a client’s risk. For example, acute HIV infection can increase the risk of HIV transmission by up to 2500% (a 26-fold increase);3,4 STIs and some vaginal conditions, such as bacterial vaginosis, can increase the risk of transmission by up to 700% (an 8-fold increase);5,6,7 or being on treatment and having an undetectable viral load can decrease the risk of heterosexual HIV transmission by up to 96% (a 26-fold decrease).8

Clients need to know about the factors that can increase or decrease their risk and by how much these factors can change their absolute risk.

Explaining how much a strategy can reduce risk (relative-risk reduction)

The effectiveness of different HIV prevention strategies and tools can vary greatly. Simply stating that a strategy reduces risk without saying by how much can be misleading. If a person overestimates the effectiveness of a strategy, they could potentially feel a false sense of security and, as a result, engage in more risky behaviours, thus increasing their overall risk of HIV transmission.

How much a strategy reduces risk is most often communicated as a percent change. For example, a recent study known as HPTN 052 found that antiretroviral treatment can reduce the risk of heterosexual HIV transmission by up to 96%.8

Risk reduction can also be communicated in other ways. For example, a 96% relative risk-reduction is equivalent to approximately a 26-fold decrease in risk. Since the percent change is generally a higher value than the fold or times change, communicating risk reduction as a percent may lead a person to overestimate the level of protection provided by a strategy.

It’s important for clients to understand that the relative risk reduction associated with a prevention strategy is not a static value, but can change depending on how well the strategy is used. For example, the ability of antiretroviral treatment to reduce the risk of HIV transmission will be much lower than 96% if a person does not adhere to their medications or if one partner has an STI. Similarly, when condoms are used consistently and correctly, they provide close to 100% protection; however, when they are used incorrectly and inconsistently, this level of protection drops.

Furthermore, the relative risk reduction calculated in a study may not apply to everyone. Clinical trials enroll specific populations, so the results may not be directly transferable to other populations. For example, the HPTN 052 study enrolled heterosexual serodiscordant couples almost exclusively and we don’t know if the results also apply to gay men and people who use injection drugs.

In addition, trials typically provide a comprehensive package of prevention services to participants—such as adherence and risk-reduction counselling, free condoms, regular STI testing and STI treatment—all of which may improve the protection provided by a strategy. In the “real world” outside of a clinical trial, the same prevention strategy may be less effective because the comprehensive package of services is not readily available.

Considering baseline risk

Clients not only want to know how much a strategy can reduce their risk, they also want to know their absolute risk of HIV transmission while they are using a strategy.

Relative risk numbers describe changes in risk but do not tell us what the risk is changed to. For example, we know that successful antiretroviral treatment can reduce the risk of heterosexual HIV transmission by up to 96%. This means that the risk has been reduced significantly compared to what it was initially; it does not mean that the risk has been reduced to 4%. In other words, relative risk is a comparison and does not say anything about what the actual risk is.

Consequently, it is difficult for clients to use relative risk information by itself to assess their risk of HIV transmission while using a prevention strategy. Assessing this risk requires that clients also have a good understanding of the context in which they are using the strategy and what their risk was to begin with, also known as their baseline risk.

As a result of differences in baseline risk, it’s possible for two people who are using the same risk-reduction strategy in the exact same way to have different absolute risks of HIV transmission. For example, a person who has an STI will have a higher risk of HIV transmission while using a strategy than a person who is using the same strategy and has no STIs.

Simply because a strategy can significantly lower a client’s risk does not necessarily mean that their risk while using the strategy will be low. If a person has a very high baseline risk, their risk may still be high after adopting a prevention strategy that significantly reduces their risk. For example, we know that the HIV transmission risk from receptive anal sex is up to 18 times higher per exposure than the risk from vaginal sex.2 Even though a strategy may be able to reduce the risk of HIV transmission by the same amount for both types of sex, the absolute risk may still be higher through anal sex because it poses a higher baseline risk than vaginal sex.

Similarly, a person who is using a certain risk-reduction strategy and is having sex 10 times a week may have a higher risk of HIV transmission than someone who is using the same strategy but is only having the same type of sex twice a week.

Conclusion

Communicating risk can be challenging but a deeper understanding of the concepts explored in this article may help people working in HIV prevention provide a more thorough risk assessment for clients. 

Below are some suggestions for assessing and communicating risk.

 • If you use qualitative expressions, such as “high-risk” or “low-risk,” be clear about the criteria used to assign an activity to each category. 

 • If you provide numbers, make sure you explain what these numbers mean and how they can change as a result of biological risk factors. 

 • Be sure to explore the factors that influence a client’s risk of transmission from an exposure and over time. Explain that the overall risk of HIV transmission increases with every exposure. 

 • When communicating how well a prevention strategy will work for a client, discuss the factors that can make a strategy less effective. Also explore how a client’s baseline risk will influence their risk of HIV transmission while using a prevention strategy. 

 • Using visual aids and scenarios may help a client understand their risk. 

 • In addition to talking about HIV risk in terms of probabilities, you may want to also talk about how transmission occurs and about the epidemiology of HIV in Canada. 

 • Since perceived risk is only one factor that influences risk-taking decisions, it is also important to explore the other factors that may be playing a role in a client’s decision-making, such as their understanding of HIV and motivations for engaging in unprotected sex.

Resources

Views from the front lines: Communicating risk

Understanding risk: A conversation

References

 1. Baggaley RF, White RG, Boily M-C. HIV transmission risk through anal intercourse: systematic review, meta-analysis and implications for HIV prevention. International Journal of Epidemiology. 2010 Aug;39(4):1048–63.

 2. a. b. Boily M-C, Baggaley RF, Wang L et al. Heterosexual risk of HIV-1 infection per sexual act: systematic review and meta-analysis of observational studies. Lancet Infectious Diseases. 2009 Feb;9(2):118–29.

 3. Wawer MJ, Gray RH, Sewankambo NK et al. Rates of HIV-1 Transmission per Coital Act, by Stage of HIV-1 Infection, in Rakai, Uganda. Journal of Infectious Diseases. 2005 May 1;191(9):1403–9.

 4. Hollingsworth TD, Anderson RM, Fraser C. HIV-1 transmission, by stage of infection. Journal of Infectious Diseases. 2008 Sep 1;198(5):687–93.

5. Ward H, Rönn M. Contribution of sexually transmitted infections to the sexual transmission of HIV. Current Opinion in HIV and AIDS. 2010 Jul;5(4):305–10.

 6. Atashili J, Poole C, Ndumbe PM et al. Bacterial vaginosis and HIV acquisition: a meta-analysis of published studies. AIDS. 2008 Jul 31;22(12):1493–501.

 7. Cohen CR, Lingappa JR, Baeten JM et al. Bacterial vaginosis associated with increased risk of female-to-male  HIV-1 transmission: a prospective cohort analysis among African couples. PLoS Medicine. 2012 Jun;9(6):e1001251.

 8. a. b. Cohen MS, Chen YQ, McCauley M et al. Prevention of HIV-1 infection with early antiretroviral therapy. New England Journal of Medicine. 2011 Aug 11;365(6):493–505.

About the author 

James Wilton is the Project Coordinator of the Biomedical Science of HIV Prevention Project at CATIE. James has an undergraduate degree in Microbiology and Immunology from the University of British Columbia.