Positive Living Magazine

NEWS A ND TRE A TM E NT I N F O RM A T I O N FRO M TH E PO S ITIV E LIV IN G SO CIE T Y O F B R ITISH CO LUM BI A

ISSN 1712-8536

JANUARY • FEBRUARY 2019 VOLUME 21 • NUMBER 1

Resilient Women

Condoms & Sex Work

Tooth Talk

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FIGHTING WORDS

Celebrating the Federal Government’s unjust prosecution announcement

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COVER STORY

Coping with questions of lust and desire in serodiscordant relationships

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LET’S GET CLINICAL Looking a the I-Score study

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NUTRITION

The perils of overeating, stress eating and other craving-related issues

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TOOTH TALK FOR PLHIV Staying on top of oral health

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AUSTRALIA’S CONDOM GIVING WELL CONCERN A chat with Condom usage is dropping down under, and the reasons are varied

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POZ CONTRIBUTIONS Recognizing Positive Living BC supporters

Colin McKenna of PFLAG

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VOLUNTEER PROFILE Volunteering at Positive Living BC

 positivelivingbc.org

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RESILIENCY IN WLHIV

A special report about the challenges WLHIV face

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BACK TALK

Our back pages aren’t so sexy. Why’s that?

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LAST BLAST

Casting your net into the dating waters can be fishy

HEALTH PROMOTION PROGRAM MANDATE & DISCLAIMER In accordance with our mandate to provide support activities and prejudice. The program does not recommend, advocate, or endorse facilities for members for the purpose of self-help and self-care, the the use of any particular treatment or therapy provided as information.

Positive Living Society of BC operates a Health Promotion Program The Board, staff, and volunteers of the Positive Living Society of to make available to members up-to-date research and information BC do not accept the risk of, or the responsiblity for, damages, on treatments, therapies, tests, clinical trials, and medical models costs, or consequences of any kind which may arise or result from associated with AIDS and HIV-related conditions. The intent of the use of information disseminated through this program. Persons this project is to make available to members information they can using the information provided do so by their own decisions and access as they choose to become knowledgeable partners with hold the Society’s Board, staff, and volunteers harmless. Accepting their physicians and medical care team in making decisions to information from this program is deemed to be accepting the terms promote their health. The Health Promotion Program endeavours to of this disclaimer. provide all research and information to members without judgment or P5SITIVE LIVING | 1 | JANUARY •• FEBRUARY 2019

Message The Positive Living Society of British Columbia seeks to empower persons living with HIV disease and AIDS through mutual support and collective action. The Society has over 5,800 HIV+ members.

POSITIVE LIVING EDITORIAL BOARD Joel Nim Cho Leung, co-chair, Tom McAulay, co-chair, Elgin Lim, Jason Motz, Adam Reibin, Neil Self MANAGING EDITOR Jason Motz

DESIGN / PRODUCTION Britt Permien FACTCHECKING KT Moon COPYEDITING Maylon Gardner, Heather G. Ross PROOFING Ashra Kolhatkar CONTRIBUTING WRITERS Rosalynn Chang, Tracey Conway, Richard Elliott, Jason Hjalmarson, Kathy Ho, Roula Kteily-Hawa, Fiona Kwan, Joel Nim Cho Leung, Tom McAulay, Jason Motz, Becky Elim Oh, Neil Self, Yaz Shariff, Sean Sinden, Jordan Tremblay, Meika Uy, Denise Wozniak PHOTOGRAPHY Britt Permien DIRECTOR OF COMMUNICATIONS AND EDUCATION Adam Reibin DIRECTOR OF PROGRAMS AND SERVICES Glen Bradford TREATMENT, HEALTH AND WELLNESS COORDINATOR Brandon Laviolette SUBSCRIPTIONS / DISTRIBUTION John Kozachenko, Matthew Matthew Funding for Positive Living magazine is provided by the BC Gaming Policy & Enforcement Branch & by subscription & donations.

Positive Living BC | 1101 Seymour St. Vancouver BC V6B 0R1

 Reception 604.893.2200  Editor 604.893.2206  living@positivelivingbc.org  positivelivingbc.org

Permission to reproduce: All Positive Living articles are copyrighted. Non-commercial reproduction is welcomed.

For permission to reprint articles, either in part or in whole, please email living@positivelivingbc.org

© 2019 Positive Living

from the chair

E

verybody living with HIV today owes a debt of gratitude to me, my colleagues and predecessors, and by extension, organizations such as Positive Living BC whose past efforts in advocacy paved the way for the current benefits of living with HIV as a chronic manageable disease.

It used to be that an acceptable form of currency for paying back this debt was volunteerism and engagement in the community—in particular, our Society. As I have noted in my previous messages to you, there is a distinct lack of engagement these days from membership and those newly diagnosed who are not members in contributing to the growth and general welfare of our movement. I say it’s time to start asking our members for financial support if they cannot otherwise contribute with sweat equity.

It’s a fact that people living with HIV today don’t have to rise up in arms to fight for everything from access to treatments to having our voices heard at the tables of various levels of industry, government, and health care. Recognizing that there are still some PLHIV today who cannot contribute either financially or through active volunteerism, there are many more whose access to treatment has enabled them to keep their jobs or continue going to school in preparation for fruitful future careers.

Am I out of line to think that people who are working and not living in financial distress are in a position to support our work?

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TOM MCAULAY

I, for example, after benefiting from increases to my disability pension, contribute $20 a month from my limited income. We have close to 6,000 members; imagine if only half of them contributed $10 per month from their income. That’s $30,000 a month. That’s $360,000 per year that could support programs and services that we’ve lost due to government funding cuts— programs and services our peers need, like: Positive Gathering, an additional Healing Retreat per year, our Members Christmas Dinner, and an extra staff position in Prison Outreach. Surely there must be 100 of our members and/or newly infected PLHIV who are not members who can afford $10 per month? Their contribution would equal $12,000 per year—enough to pay for members’ important programming.

I want to remind you that the easiest way for working members to help the Society (especially those members with dental coverage through their insurance provider) is to visit Positive Living BC’s Community Dental Clinic. The Clinic is a social enterprise, which means it operates as a commercial strategy to support our social goals. When you visit our stateof-the-art clinic and are treated by our professional staff, your insurance helps pay for the entire Society’s operations.

The point of this message is not to shame anyone. Rather, we have a distressing problem and we need to solve it together.

I am open to your idea, comments, and feedback. You can always contact me tomm@positivelivingbc.org. 5

Stigma Impairs Cognition in which the patient lives also plays a in HIV-Positive Men role. This study underscores the need for

pA new study has drawn a direct link

between the amount of stigma men with HIV report experiencing and their scores on cognitive tests, measuring abilities such as memory and attention.

The study, by researchers from the Montreal Neurological Institute and Hospital (The Neuro), McGill University, and the McGill University Health Centre tested 512 older Caucasian men living with HIV drawn from clinics across Canada and part of the Positive Brain Health Now cohort.

The participants filled out a questionnaire asking how much stigma they experience. Their answers were related to their results in cognitive testing and mental health questionnaires.

Researchers found that HIV-related stigma had direct effects on cognitive test performance and anxiety. There was also a direct but weaker link between stigma and depression. Through its effects on cognition, stigma was found to reduce participation in social activities and impair function in everyday life.

This study is the first to draw a direct connection between stigma and cognitive performance in people with HIV. The mechanisms through which stigma affects cognition are unclear, but might range from the impact of chronic stress on the brain, to psychological effects such as internalized negative beliefs.

“Our research shows that the neurological impact of HIV goes beyond pure biology,” said Dr. Lesley Fellows, a researcher at The Neuro and the study’s lead author.

“The psychological and social environment

interventions that reduce social stigma and support resilience against its toxic effects on the brain health.”

Source: Journal of Acquired Immune Deficiency Syndromes, Nov. 2018.

HIV Latency Differs Across Tissues in the Body

pMechanisms that govern HIV transcription

and latency differ in the gut and blood, according to a study published November 15 in the open-access journal PLOS Pathogens

by Steven Yukl of San Francisco Veterans Affairs Medical Center and the University of California, San Francisco, and colleagues.

According to the authors, the findings could inform new therapies aimed at curing HIV. Available antiretroviral drugs significantly prolong life expectancy in people living with HIV. However, the virus can escape host defenses and drug treatment by establishing a reversibly silent infection in immune cells that produce a protein called CD4 (i.e., CD4+ T cells). This latent infection, which is characterized by inactivated HIV transcription, represents the major barrier to a cure. While much of the research to date has highlighted the importance of CD4+ T cells in the blood as reservoirs for latent HIV, it is becoming increasingly apparent that the gut may play an integral role as a major tissue reservoir for the virus. To compare the mechanisms that inhibit HIV transcription in the gut and blood, Yukl and his colleagues quantified HIV transcripts in cells from the blood and

rectum of HIV-infected individuals effectively treated with antiretroviral drugs.

The researchers found that different mechanisms block HIV transcription and underlie HIV latency in CD4+ T cells in the blood and gut. Moreover, the findings suggest that the rectum may be enriched for latently infected cells, or cells in a deeper state of latency. These differences in the blocks to HIV transcription are important to consider in designing therapies that aim to disrupt HIV latency in all tissue compartments. In particular, infected cells in the rectum may be less susceptible to agents designed to reverse latency or may require different types of therapies.

Source: https://www.eurekalert.org/pub_ releases/2018-11/p-hld110818.php

Bullying Follows LGB People from School to Work

pAround one in three lesbian, gay, and

bisexual individuals who are bullied at school will have similar experiences in the workplace later in life, according to new UK research.

The study by Anglia Ruskin University (Manchester) and published in the Manchester School journal, approached 400 LGB people retrospectively about their experience at school, and also asked them about bullying at their current workplace.

It found that 35.2 percent of gay/bisexual men who had experienced frequent school-age bullying experience frequent workplace bullying. Among lesbian women, the figure was 29 percent.

When describing their experiences at school, 73 percent of gay men said they

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were either constantly, frequently, or sometimes bullied. Just 9 percent said they were never bullied. Among lesbian women, 59 percent experienced constant, frequent, or occasional bullying. The mean age of the participants was 37, meaning their school years would have been approximately between 1985 and 1997.

The research also examines job satisfaction. Most gay men said they were ‘dissatisfied’ with their job (56 percent), while this was also the most common answer for lesbian women.

Author Dr. Nick Drydakis said: “This study suggests that bullying may be a chronic problem for LGB individuals, which continues from school to the workplace.”

“Post school-age bullying victims might exhibit characteristics of vulnerability, such as sub-assertive behaviours, which make them attractive targets for unfavourable treatments and evaluations from colleagues and employers in the workplace.”

The study’s patterns are in line with a 2018 Government Equalities Office survey finding that at least 40 percent of LGB respondents had experienced a verbal harassment or physical violence between 2016 and 2017.

Source: www.anglia.ac.uk

Patients with Rare Natural Ability to Suppress HIV Shed Light on Potential Functional Cure

pResearchers at Johns Hopkins have iden-

tified two patients with HIV whose immune cells behave differently than others with the virus and actually appear to help control viral load even years after infection. Moreover, both patients carry large amounts of virus in infected cells, but show no viral load in blood tests. While based on small numbers, the data suggest that long-term viral remission might be possible for more people.

A Special Note of Gratitude …

… and appreciation to Karla Ahlqvist and the Wildlife Thrift Store for their most recent donation of $4,000, part of their enduring support for our organization over the past three decades.

Wildlife Thrift Store regularly donates a portion of their annual revenue to programs that directly support the well-being and emotional needs of people living with HIV, specifically our yearly Healing Retreats at Loon Lake. Karla also stepped up to the plate when we approached her for a donation of a table and chairs for a corner of our members’ lounge we are dedicating to the loving memory of our recently deceased grandmother of volunteers, May McQueen. This is a magnificent gift from a wonderful thrift store that I hope everyone will support knowing that in the end you are also supporting Positive Living BC.

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A report of the findings was published online September 20 in the Journal of Clinical Investigation Insight.

“One of our patients was infected nearly 20 years ago, spent a few years on antiretroviral therapy, then stopped ART and has been ‘virus-free’ for more than 15 years. Our findings suggest that early treatment with ART can reset a patient’s immune system to the point where the virus can be controlled even when ART is discontinued,” says Joel N. Blankson, M.D., Ph.D., professor of medicine at the Johns Hopkins University School of Medicine and last author of the study.

“Understanding how this occurs could lead to a “functional cure” for HIV-infected patients,” adds Blankson.

Source: Johns Hopkins Medicine 5

By Tom McAulay

Moving to end unjust HIV Prosecutions Human rights advocates welcome historic announcement by federal government

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oday, on World AIDS Day, federal Attorney General Jody Wilson-Raybould announced a new directive to help limit unjust prosecutions against people living with HIV in Canada. This new directive, which comes after years of advocacy by the Canadian HIV/AIDS Legal Network and many partner organizations, is consistent with Justice Canada’s own recommendations and a welcome step in the ongoing effort to the end the criminalization of HIV. It is also better aligned with the latest scientific evidence regarding HIV and its transmission.

Last year, the Canadian Coalition to Reform HIV Criminalization (CCRHC), of which we are a founding member, released its Community Consensus Statement, signed by more than 160 organizations Canada-wide. In this statement, we detailed key steps that the federal, provincial and territorial governments must take in order to curb the overly broad use of criminal law against people living with HIV. Yesterday, the CCRHC issued a follow-up statement in which more than 100 organizations called on the federal government to act on its stated concerns about “overcriminalization of HIV” and the conclusions of a Justice Canada report released a year ago. Scientists have also repeatedly called on federal and provincial governments to heed the science and limit prosecutions accordingly.

We are pleased that the government has listened to our collective voice and taken much-needed action

today. We congratulate the Attorney General for this welcome and important step.

We note that this directive only governs federal prosecutors, who handle such criminal prosecutions only in Canada’s three territories. We therefore continue to call on provincial Attorneys General to follow the federal government lead and issue similar directives limiting prosecutions against people living with HIV in their jurisdictions. At this time, no province has yet issued clear directives reflecting these limits on the misuse of the criminal law. Unjust prosecutions—and the fear of such prosecution—continue. We also continue to call on the Government of Canada to enact Criminal Code reforms that remove HIV non-disclosure prosecutions entirely from the reach of sexual assault laws. 5

Richard Elliott is the Executive Director of the Canadian HIV/AIDS Legal Network.

The proceeding statement was issued by the Canadian HIV/AIDS Legal Network on December 1, 2018.

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Conquering Food Cravings

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By Fiona Kwan ome people have the habit of eating more than what their body needs. This can happen in either a single sitting, like taking extras at a meal, or multiple times during the week, like constant snacking in-between meals.

Most people are conscious of any overeating behaviours they may have, but struggle to find a solution to stop them.

How do such behaviours begin? Your brain has different mechanisms in developing habits, including associating sensory cues with a memory, which then drives an action based on the anticipated reward of the action. Sensory cues can be thoughts or smells of food, and the memory can be past experiences involving the specific food.

With food cravings, this mechanism leads to more dopamine—the brain’s feel-good neurotransmitter— from the desire to eat than from the actual act of eating. This is why compulsive overeaters still want to eat despite feeling full, or are able to eat past the point of a pleasant, healthy experience.

Take stress eating, for example: if you often use food in reaction to stress, it develops the association between pleasure from eating and stress relief. Over time, it’s hard not to think about eating during a stressful period. When you stress eat, your body develops a dopamine rise from doing so and you feel good.

Another contributor to excess eating is sugar or other heavily processed carbohydrates, like refined cereals, white bread, and pastries. Sugar is often claimed to be an addictive substance, and it’s sure true for some. Tasting sugar or other carbohydrates that

rapidly metabolize can also cause a dopamine rise. The pleasure is short-lived though, so we crave them again soon. If having heavily processed carbohydrates to relieve hunger, the fullness afterwards is also temporary as your body breaks down the food quickly. You are then prone to eating more again soon after. Choosing a more balanced meal or snack with a higher fibre carbohydrate with protein in the first place can help stop this.

Addiction to drugs or alcohol is related to sugar cravings, too. With ongoing active use, these substances hijack the brain’s pleasure centre and reward pathway, changing the way these areas of the brain function.

The brain gets used to the dopamine from external substances that it will stop producing dopamine in a natural way. Consuming sugar then becomes another external source for a dopamine rise. That is why when people quit drinking or using drugs, they may find their sweet cravings go up. Even after quitting, it can take some time for your brain to re-adjust.

If this is the case for you, try mindful eating methods. Take your time eating and chew thoroughly, noting the smell, taste, and texture of each bite. Using your different senses can provide more satisfaction when eating.

A common worry of overeaters is increased body fat. But the real goal around proper portions and your health isn’t preventing extra weight per se—it’s about nurturing eating habits that support a healthy relationship with food, while limiting the risk for diabetes, hypertension, or heart disease. 5 Fiona Kwan is a registered dietician at the Dr. Peter Centre in Vancouver.

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DENTAL HYGIENE PROVIDED FREE FOR MEMBERS ONLY!

💿💿

­

💿💿

(

)

■

PUT YOU R

SMILE O IN FRONUT T.

­

(or to your preferred dental professional)

Oral report: common dental concerns for PLHIV

By Rosalynn Chang, Beck Yelim Oh, Jordan Tremblay, Meika Uy

I

t’s the ‘Sex Issue’ and we know that a healthy smile can help make you look and feel more sexy. Too bad HIV and the medicines used to treat it can sometimes make that easier to say than smile.

Approximately 30–80 percent of PLHIV will experience an oral health problem related to HIV. Common origins of many oral health conditions include fungal, viral, and bacterial. The common causes for oral health problems include a CD4 count of less than 200 cells/mm3, viral load more than 3,000 copies/mL, saliva alterations, poor oral hygiene, and smoking. Saliva alterations are common for those that take two medications, including those used in the treatment of HIV, and can result in further oral health concerns if left untreated.

It is important to be aware of the side effects of HIV medications, so they can be managed to ease discomfort in the oral cavity.

The most common side effect is dry mouth, which can increase the chances of developing cavities and gum disease.

Other common oral side effects include: altered sense of taste, spotted rashes, hyperpigmentation of the gums, and sores in the corners of the mouth. Less common side effects include swelling of the face and lips of those taking Ritonavir, Enfuvirtide, and Indinavir.

Another side effect to be alert for is Erythema Multiforme, which is a hypersensitivity reaction, appearing as a red target-shaped pattern.

It is important to take your HIV medications as prescribed. If side effects cause discomfort, worsen, or last longer than five days, notify your doctor as soon as possible.

To help maintain the health of your mouth and reduce the risk of oral problems, the following should be considered:

r Get regular dental hygiene visits to help identify and address potential problems early on. r Topical fluoride for those at high risk of cavities should be applied every three-six months.

r Ensure fluoride is an ingredient in your toothpaste or mouthwash. r Try to maintain a balanced diet and decrease the frequency of

sugar intake. r Rinse your mouth with water after meals and snacking. r Practice good oral hygiene at home with proper techniques to reduce the risk of gum disease. r Sip water to stay hydrated. r Chew sugar-free gum during the day to help stimulate saliva in the mouth.

If you are concerned about your oral health or have any questions, you can book a dental hygiene appointment at the Positive Living Dental Hygiene Clinic on the 4th floor by calling 604.893.2207. We offer FREE dental hygiene services to Members every Wednesday from 10:00am – 4:00pm during the school year. 5 The authors are fourth-year students in the Dental Hygiene Degree Program at the UBC Faculty of Dentistry.

References •

Ryder M. An Update on HIV and Periodontal Disease.

Journal of Periodontology. 2002;73(9):1071-1078.

•

Ryder M, Nittayananta W, Coogan M, Greenspan D, Greenspan J. Periodontal disease in HIV/AIDS. Periodontology 2000. 2012;60(1):78-97.

•

Navazesh M. Thirty years of HIV/AIDS and related oral manifestations and management. J Dent Hyg. 2014;88(3):153-5.

•

Ayangco L. Oral manifestations of erythema multiforme.

Dermatologic clinics. 2003 Jan;21(1):195-205.

•

Chapple I. The significance of oral health in HIV disease.

Sex Transm Inf. 2000;76(4):236-243.

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W

By Roula Kteily-Hawa and Tracey Conway

omen living with HIV (WLWH) face significant cultural, social, economic, familial, and interpersonal challenges. As a result, public health researchers have long been fascinated by the concept of “resilience” — the ability to maintain healthy psychological and physical behaviours and interpersonal relationships in the face of extraordinary circumstances. Across the general population, resilient people present fewer symptoms of depression, anxiety, and perceived stress, and are hardier and better able to accept their life circumstances.

Within the HIV literature, resilience is a protective factor among WLWH that facilitates the relationship between stress and mental health towards a healthier balance; resilience has been associated with positive health benefits, including viral suppression, treatment adherence, and health-related quality of life, both physical and mental. In vulnerable communities with chronic illnesses, research tends to prioritize struggles and under-study positive drivers.

Exploring resilience, therefore, is fundamentally about learning how women flourish in spite of adversities and how we can support them.

We know that resilience is influenced by a variety of meso, exo, and macro systems, including interactions with people, family, community, society, culture, institutions, and the natural environment. However, few studies have explored the multi-level factors — known as social ecological factors — that are associated with resilience among WLWH, and how these can feed into pathways to resilience. Unpacking how resilience changes in these contexts for WLWH can therefore provide essential insights for governments, non-profits, and community advocates about how best to support these women.

The authors were inspired by their lived experiences to write this article. A refugee to Canada, Roula has been an educator and public health researcher for more than a decade, learning and working with South Asian and queer women with HIV. Tracey is a woman living with HIV, who

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believes in a holistic and community-based approach to supporting other WLWH. To them, this research is helping address a major gap in the literature.

This article is based on an abstract for a paper presented at the 27th annual conference of the Canadian Association for HIV/AIDS Research (CAHR 2018) in Vancouver, B.C., which used a sample of 1,415 WLWH (aged ≥ 16) enrolled in the Canadian HIV Women’s Sexual and Reproductive Health Cohort Study (CHIWOS) from 2013 to 2015 in B.C., Ontario, and Québec (www.chiwos.ca).

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Exploring resilience is about learning how women flourish in spite of adversities and how we can support them in thriving.

For WLWH, resilience has been linked to better quality of life. WLWH experience significant stress and adversities due to gendered vulnerabilities of HIV, resulting in stigma, discrimination, economic insecurity, and an inability to safely disclose. In addition, WLWH experience daily systemic forms of oppression that contributes to lower resilience, self-worth, and self-esteem. While the larger body of work envisions resilience largely as a process defined by individual assets and contextual resources, we believe that focusing analysis of resilience solely at the individual level negates the importance of more complex interactions that can be better captured by a social-ecological approach, which allows for the exploration of associations with multi-level factors.

The factors we chose to explore include: socio-demographic factors like socio-economic status (SES), which was measured by education, income, food security, and housing stability; marital status; gender identity; province of residence; ethnicity; and psychosocial factors like cigarette use, cannabis use, recreational drug use, injection drug use, and hazardous alcohol use.

According to Tracey, looking back over time, there were many things that helped her to move ahead after her diagnosis in 1998. “I was quite ill at the time and did not think I would live long. One of the most important things that helped me move forward was connecting with other people living with HIV and becoming involved in the community. Many

of the women I met helped me see that it was possible to have a fulfilling life, a partner, and even children. I am very fortunate to have been diagnosed when Voices of Positive Women was still around. These wonderful ladies helped me develop confidence, my abilities, and, most importantly, they helped me learn how to live with HIV. As someone from a small town with a history of addiction issues, these women were encouraging and supportive when access to Health Care and social support was difficult. For me, listening to others share their experiences let me know I was not alone and helped with the effects of stigma and discrimination when I was geographically isolated”.

The overall resilience scores for the WLWH who participated in the CHIWOS study were found to be high, with findings suggesting that intersectional gender identity, ethnicity, and province of residence all have direct and indirect effects on resilience.

Corroborating results from other studies in the literature, our results indicate that factors that influence resilience may be intersectional and exist through relational conceptions of political power within social interactions. For example, environmental and psychosocial resources such as higher education, higher income, stable housing, employment, and better psychosocial status are associated with higher resilience among WLWH. Our findings also indicate that socio-economic status mediates the impact of ethnicity and gender identity on resilience, confirming results from studies in the literature.



One of the most important things that helped me move forward was connecting with other people living with HIV. 

The authors found that transgender (trans) women had higher resilience than cis women, potentially because trans women are connected with communities of other trans women that provide social support, an important factor associated with resilience. However, more in-depth analyses revealed that SES influenced the effect of gender identity on resilience. Many of the results were also found to be intersectional: for instance, while it was unsurprising to find that resilience is influenced by SES, ethnically-diverse participants showed lower average resilience in comparison

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to white participants when SES was accounted for. Of note, ethnically diverse participants with psychosocial challenges (e.g., more likely to use cigarettes and cannabis and drink alcohol) had a higher resilience in comparison to white participants with a lower psychosocial status. All these findings suggest the need to further explore how resilience is influenced by racism, substance abuse, and their intersectionality therein.



Exploring resilience is about learning how women flourish in spite of adversities and how we can support them in thriving.

Province of residence was also found to have a statistically significant effect on resilience, with WLWH in the province of Québec showing the highest levels of resilience, perhaps explained by the higher income and education amongst women from Québec or the role of HIV stigma, programming, and policy implemented in the province. This suggests a need to examine the multiple socio-cultural and contextual factors — specifically laws and policy — that vary from one province to another in order to understand how they affect resilience for WLWH and make future policy recommendations.

In our view, in order for governments, non-profits, and community advocates to promote the resilience of WLWH, their approach must be multi-level, intersectional, and based around a social determinants of health perspective.

Policymakers and care providers can address enabling factors that lead to high resilience in this population by combating food insecurity, promoting good mental health, and by assisting women with their substance use with supportive harm reduction strategies. By identifying multiple levels (and variables) that impact resilience, this study has the potential to strengthen the provision of health care and related services for WLWH and to pave the way for integrated women-centred health care programs, grounded in a women-centred health care approach that promotes positive resilience in WLWH. 5 Roula Kteily-Hawa (l) is an educator and a post-doctoral research fellow at Women’s College Research Institute, University of Toronto.

Tracey Conway (r) is a Research Assistant and Project Coordinator at Women’s College Hospital in Toronto. Most importantly, she is a mother.

Key References Kteily-Hawa, R., Warren, L., Kazemi, M., Logie, C., Islam, S., Kaida, A., Conway, T., de Pokomandy, A., Mona Loutfy (2018).

Examining Multi-Level Factors Associated with the Process of Resilience among Women Living with HIV in a Large Canadian Cohort Study: A Structural Equation Modelling Approach. Submitted to AIDS Patient Care and STDs

Loutfy, M., Greene, S., Kennedy, L., Lewis, J., Thomas-Pavanal, J., Conway, T., ... Kaida, A. (2016). Establishing the Canadian HIV women’s sexual and reproductive health cohort study (CHIWOS): Operationalizing community-based research in a large national quantitative study. BMC Medical Research Methodology, 16(1). doi:10.1186/s12874-016-0190-7

Logie, C., Wang, Y., Kazemi, M., Kteily-Hawa, R., Islam, S., Kaida, A, Conway, T., Webster, K.,Pokomandy, A., Loutfy, M. (2018). Exploring social ecological pathways from resilience to quality of lifeAmong women living with HIV in Canada. AIDS Care. https://doi.org/10.1080/09540121.2018.1488031

Ungar, M. (2011). The social ecology of resilience: Addressing contextual and cultural ambiguity of a nascent construct. American Journal of Orthopsychiatry, 81(1), 1–17.

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Whose gonna love me now?

It

Sex & anxiety after a positive diagnosis

By Yaz Shariff

is not uncommon for a HIV diagnosis to make you feel undesirable, particularly shortly after the diagnosis.

Frankly, it’s a bit of a cock block. After the dust settles on a HIV diagnosis and you begin to realise life can be just as healthy as before, you may then contend with the thought—who’s going to love me now?

The link between viral load and transmission is not exactly breaking news. In 2008, the Swiss Statement declared people on effective HIV treatment could not transmit the virus sexually. Since then we have observed over 150,000 acts of condomless sex in serodiscordant partners with zero attributable transmissions. The only HIV prevention tactic employed in all studies was being on sustained and consistent treatment. continued next page

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The made in BC TasP is the science behind U=U. A campaign with versatility, it provides education on transmission consequently reducing stigma and has significance in HIV prevention by unequivocally setting the record straight—people on effective HIV treatment cannot pass HIV to their sexual partners.

The potential U=U has in helping conceive a HIV negative child and its impact on family planning resonates with many in the community. The power of U=U extends beyond the bedroom addressing fear, shame, and discrimination. The movement’s groundbreaking impact has been dampened by lingering prejudices and persisting distortions of facts causing resistance sharing the message.

How sexual practices have changed in the era of prevention strategies such as TasP, PrEP, and U=U remains to be seen in full. Less commonly reported is the impact TasP has on curbing new diagnosis. Subsequently the message of how people living with HIV keep their partners safe is subdued. Yet someone diagnosed with HIV for decades that may have been consistently undetectable for the majority of that time, has had to live with the fear and discrimination of considering themselves a danger.

Encouraging conversations around HIV status is part of the fight against transmission. If you received negative reactions each time you shared your status would you still do it?

Responsibility to eliminate HIV transmission is on all regardless of serostatus. The fear around HIV isn’t only about acquiring the virus; it’s also about passing in on.

We spoke to two couples navigating a serodiscordant relationship. Chris and Liam (not their real names) have been together for just over a year. Liam was diagnosed with HIV back in February 2018 shortly after moving from a conservative country.



Everyone needs to hear that if someone takes the medication to reach undetectable that means they cannot transmit it.

Positive Living: How did you meet?

Chris: At a supermarket.

Liam: No, we met on Grindr.

PL: What went through your mind when you received your diagnosis?

Liam: I’m going to die. You think it’s the end, I still think that.

I didn’t know much about it. I had to tell him (Chris) right away we’d had unprotected sex. I couldn’t sleep I couldn’t eat.

Chris: Time freezes. You think holy shit, this must be a mistake, is he gonna be okay. I assumed I had it too and I had transmitted it to him. I was really grateful he told me right away. We spent several days in bed trying to process it. I’m grateful to Kimmy Schmidt, I think she got us through it.

Liam: I got a lot of help from my counsellor and my peer navigator. Progressively, it’s easier to live with but still very scary, even though I know I’m on treatment and my (viral) count is undetectable.

PL: Has your sex life changed since your diagnosis?

Liam: Yes, especially immediately after my diagnosis I was turned off from sex. My libido is very low, it causes a problem because his libido is very high. Physically I’d be aroused but mentally can’t bring myself to the act.

Chris: Helping me understand how the diagnosis affects his libido is what we deal with most. A lot of that is reassuring me it has nothing to do with whether he is attracted to me. I still struggle with it, if I’m horny and have that physical urge, then not receiving it back causes a bit of a disconnect.

PL: Is there any fear associated with the sex you have?

Liam: Always, what if I give it to him.

Chris: He does, for some reason I don’t fear it. I read a lot of information on what’s the word – serodiscordant couples – like us and I feel better after what I read. I’ve learned that this is actually a really common situation; I was blown away at the number of serodiscordant in long term relationships.

PL: Did you always have that attitude around transmission?

Chris: I didn’t totally understand undetectable. I saw a bottle of PrEP at my previous partner’s house. I thought it was meds for HIV. I freaked out, it never occurred to me if it was meds for HIV that was a good thing. When I broke it down, it’s really not a risk.

PL: What are your thoughts on the U=U message?

Chris: I love that statement. That’s part of the reason why I’m not fearful of it. If you have an undetectable viral load and taking the medicine you can’t pass on HIV. You’re less likely (to transmit HIV) than somebody who might not get tested right away or who thinks he is negative.

Liam: I still find it hard to believe, my cultural background is just to think once you have it you will pass it on. I haven’t heard it from anyone else.

Chris: It didn’t register fully at first. I heard incorrectly but from a credible source you still have a 0.1 percent risk.

I heard it once, but that lingered. Only after hearing

P5SITIVE LIVING | 14 | JANUARY •• FEBRUARY 2019

(U=U) repeated so many times I was like, ‘oh wait you can’t transmit it if your undetectable.’ That misinformation is really harmful. It takes that one time to hear it and you have to really make up for it, especially from credible sources.

Liam: That’s hard to undo. I think, who else is like me that doesn’t know and even if they know find it hard to believe? Where I’m from there’s not much publicized other than to be scared. Be scared of the disease it kills you.

PL: What are your HIV prevention strategies?

Liam: We try to use condoms.

Chris: Perhaps it was a mix of impulsiveness or information but the only prevention method we use consistently is his treatment.



How sexual practices have changed in an era of prevention strategies like TasP, PrEP, and U=U remains to be seen in full. 

PL: Had you considered PrEP? Chris: Actually, I have an appointment with my doctor today.

I’m considering it in addition to something that’s already bullet proof. More sex the better—I want to get more info on the side effects.

Liam: I think it’s a good idea.

PL: Have your plans on starting a family changed in light of U=U? Liam: I remember when I had my diagnosis crossing off the things I couldn’t have and a child was one of them. It’s good to know the possibility still exists and the child would be healthy.

PL: Is there anything you want to share with other serodiscordant couples?

Liam: Try not to be afraid, seek information the more I learn the easier it is to live with the diagnosis. Secondly, if you’re in a relationship try to be as open as possible cause you’re going to need the mental support. Having someone that’s familiar of the disease like a peer navigator is really helpful, I can talk to them anytime, it was comforting to know the support was there. Take

your pills! Get into a routine, don’t run out because that’s not only protecting you but also your loved ones.

Chris: I just think everyone needs to hear the fact that if someone takes the medication to reach undetectable that means they can’t transmit it. People still think HIV and AIDS are the same thing.

Denise and Henry have been together for five years.

PL: How did you find out you were HIV positive?

Denise: In 1994 I had a baby girl; six months later we were at BC Children’s Hospital. They tested us for HIV. I had HIV, my then husband was negative, and they found my daughter was exposed in the womb. Funnily enough my first thought was how much I’d judged people in the past. I was worried about getting it from a glass in those days. My HIV knowledge was terrible.

Henry: I didn’t really know a lot about it before we met. I knew what it was, basically a disease that was affecting the homosexual population. I was neither here or there about it.

PL: How has your sex life changed since your diagnosis?

Denise: My antidepressants and sleeping pills I take to prevent PTSD is the only change. When I take a sleeping pill at night I’m pretty much out right away.

Henry: Yeah!

Denise: When I forget one I get really horny. Apart from that we have a good sex life. My doctor was very jealous of my sex life. It’s always been good.

PL: Is there any fear associated with the sex you have?

Denise: In the end I was 18 years with my ex-husband and he never got it. Condoms are a bit of a kill joy.

Henry: Nope, I never worry about it. When I met Denise she didn’t want to date me — she liked me I liked her but dating, she wasn’t sure about it.

Denise: I’d told him I couldn’t see him and that it was me not him.

Henry: When somebody tells you it’s me not you – you immediately think it’s you. She told me she had HIV and I said, well yes I know. I Googled you; it’s no big deal. She’d told me before we hook up I have to get an HIV test.

Denise: I didn’t want the guilt of passing it on to him. I’d already passed it on to my child I couldn’t take that again passing it to somebody I loved.

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continued next page

Henry: I was sure I never had it, but who knows. I went and got one and I was of course clean.

Denise: As opposed to me being dirty?

Henry: Yes (awkward silence). I didn’t have anything so we moved on from there.

PL: Do you always disclose your status?

Denise: Always, to every partner, every boyfriend and every guy I met on Plenty of Fish. I’d say there’s something I need to tell you and he’d say, oh you’re a man? I feel I have to educate everyone I disclose to. I’ll send them some educational material; it also proves that you are disclosing to someone. I’ve always taken the attitude if they have a problem with it move on.



We have a good sex life.

My doctor is very jealous of my sex life.

PL: What are your HIV prevention methods?

Denise: Well, I take meds. And he reminds me to take them.

Henry: If you miss a dose of your HIV meds it’s not the end of the world.

Denise: Yeah, he can’t take it if I’m not on my antidepressants.

PL: Has your healthcare team discussed prevention?

Denise: Dr. Montaner was my doctor. I trusted him completely.

I asked what my chances of infecting someone and he said you’ve got more chance of walking down the street and having a piano dropping on your head than infecting someone. This was kind of nice. He never told me I should be using condoms.

Henry: Denise has taught me a lot about it. After I read what I read and I listened to hear talk I felt secure. I put my faith in her a lot that what she was telling me was honest and truthful.

PL: Are there negative attitudes family and friends?

Henry: No, none at all.

Denise: The interesting thing is my last husband did experience that. His family was worried about him; they were surprised he was with me.

PL: Do you think U=U has helped reduce stigma?

Denise: A little. I can use that to help educate people and they understand better. There is still willful ignorance and

they can’t let go of what they already think they know.

I’m aware of that amongst women with HIV, they know the information but they are scared to date anyone.

U=U means I don’t worry about him having HIV. It gives me a more positive attitude reminds me having HIV is who I am but as a part of my journey. It’s helped me go back to being the person I am without thinking of it all the time.

PL: Do you have any advice for others in a serodiscordant relationship?

Henry: I’d say for most people it’s not a big deal from the other side of the fence. I just hope it works out for them.

Denise: It all comes down to self confidence, it’s hard to believe you can go out and date again without it. Half of the stigma is self imposed stigma where you believe you are not worthy to date and you might infect them.

Henry: People aren’t walking around with a big HIV tattoo on their forehead. You can’t say get over it but if you want to have a life you need to do the best you can to meet people and explain it to them . And U=U is great cause it’s an easy line to remember.

PL: How did you meet? Love at first sight?

Denise: For him it was.

Henry: We met at a wedding. I was very overcome with her she just knocked me out. She was one of those girls that come along and are like wow. I was truly enamoured with her.

Denise: Except now he loves the dog more, he had that wow feeling when he met the dog.

Henry: The relationship is strong, the fact that she has HIV is not important to me at all, undetectable equals untransmissible and I don’t worry about that. We just do what other couples do, it’s a normal relationship.

Denise ended the call acknowledging they wanted to share their relationship so as to show others in similar partnerships they are not alone out there. Liam and Chris asked to remain anonymous echoing fears around the stigma of being outed as HIV-positive or the stigma to be in a serodiscordant relationship. We’ve witnessed the detrimental effects of fear based campaigns over the last 30 years, it’s time those messages not only stop but are replaced with a picture of strength and hope to counter the damage done in the past. U=U provides a means to this. 5 Yaz Shariff is Treatment Outreach Coordinator at Positive Living BC.

P5SITIVE LIVING | 16 | JANUARY •• FEBRUARY 2019

C

By Emma Duncan

onsistent condom use among Western Australian sex workers has declined over the past decade. However, compared to the Australian general population, there are still high testing rates, higher rates of condom use, and comparable rates of sexually transmissible infections (STI) among sex workers. The drivers for this decline are varied, with criminalisation of sex work being a primary factor, finds new research published in Frontiers in Public Health.

The study of 354 sex workers found unexpectedly low rates of reported condom use for all forms of penetrative sex—but particularly oral sex, where only 33 percent of respondents reported consistent condom use with clients. This compares to 84 percent and 96 percent reporting consistent condom use during oral sex with clients in two studies of female sex workers in 2007.

The study also found that female sex workers working exclusively in brothels reported higher rates of condom use compared to those working privately.

“Participants in our study told of the increased requests by clients for “natural” or condomless sex. This, coupled with the economic downturn (resulting in decreased demand for sexual services) and the criminalisation of sex work in Western Australia, brings further challenges for sex workers to hold the line on condom use,” says Julie Bates AO (Order of Australia), one of the study authors and Head of Urban Realists Planning & Health Consultants.)

“We don’t know whether this change has also occurred in other Australian states and territories—but our findings in Western Australia point to the need for increased sexual health education

in the wider community and increased peer support opportunities among sex workers, particularly those new to the industry.”

The authors highlight criminalisation of the sex industry and how this inhibits health promotion and the ready availability of condoms as a significant impediment to safe practices.

“In order to facilitate peer-based education and support services for sex workers, as well as accessible health services, we recommend decriminalisation of sex work in Western Australia and other Australian jurisdictions where sex work is currently either criminalised or licensed,” says Bates. “Increased funding is also needed for peer-based education and support— particularly for private sex workers, as the law in Western Australia currently prohibits two workers working together in a private situation thus impeding the benefits of long established informal peer support opportunities.”

“Sex workers have held the line so to speak in safe practices for over 30 years, it’s now time for the rest of the community to catch up,” says Bates. The authors also recommend broad-based education on sexual health and condom use in the general community, highlighting the importance of condom use during sex with casual partners and testing for sexually transmissible infections.

The research was prompted by observed changes to the sex industry in Australia over the past decade, with an increasing proportion of private sex workers working outside of brothels.

To read the original research paper visit https://www.frontiersin.org/articles/10.3389/fpubh.2018.00342/full 5

P5SITIVE LIVING | 17 | JANUARY •• FEBRUARY 2019

P5SITIVE LIVING | 18 | JANUARY •• FEBRUARY 2019

Giving Well P

FLAG Canada is one the strongest links within the LGBTQ+ community helping to support young people and their families to better understand how to “come out.” I spoke with one of the PFLAG’s local stalwarts, Colin McKenna, to discuss his role with PFLAG and his connections to Positive Living.

PL: What does PFLAG do? And what’s your role with them?

CM: PFLAG stand for Parents, Friends, or Family of LGBTQ+. The mandate for PFLAG is to educate and advocate. What this means is people who are parents, friends, or family of LGBTQ+ people, we want to make sure they understand what it means to be LGBTQ+, we want to help people to understand that being LGBTQ+ isn’t a choice someone made. We’re also advocates and sometimes activists depending on need; for example, in BC during the municipal elections, there was a lot of attention being paid to Sexual Orientation & Gender Identity (SOGI) guidelines put forward for teachers. PFLAG has taken an active role to help parents understand the new guidelines and get past some of the hateful rhetoric being put forward by some of the candidates.

Nowadays, when people come to our meetings, most are there because their child is identifying as transgender and they are looking to educate themselves so they can support their child.

It’s different today than it was when I got involved. We used to see a lot of “My son is gay and I don’t know what to do. My life is ending!”, but we don’t see so much of that anymore.

A DONOR PROFILE

By Jason Hjalmarson

PL: Shifting to the AIDS WALK, how long have you been involved with the WALK? CM: I started WALKing in 2000 as well. I came out in 1998 and got involved in my community not long afterwards. My partner and I had just met; I think the first WALK I did we’d been together maybe a month. The 2018 WALK was my 19th year WALKing!

PL: Tell me more about the reasons you got involved with the WALK? CM: I grew up in Langley and Abbotsford, and when I moved to the West End in 1999, I saw people who looked ill living on the street. As someone who had recently come out myself, I was afraid.

I didn’t know a lot about AIDS or HIV except that I was told, “You need to be very careful, you need to protect yourself, watch out for those types of people.” This is what I was hearing then, and obviously to this day there is still a lot of stigma. I realized at that point that this was my community, that the people living with HIV or AIDS on the street mattered.

So as time moved on and younger people came out after me, I realized that they didn’t realize what had happened, they didn’t know what AIDS & HIV meant. So continuing the WALK was good way to help educate some of the younger members of our community.

PL: Tell me more about how you approach fundraising for the AIDS WALK? CM: Aggressively! I have a sales background and at this point in my life, I have a large network of people to draw from. I’ve been participating for a long time, so people know, this is Colin’s thing, this is what I do every August and September. I use social media and follow up with people personally—I might even have lost a few friends over the years, but I don’t really care, because the cause is an important one. 5 Jason Hjalmarson is Director of Fund Development at Positive Living BC.

P5SITIVE LIVING | 19 | JANUARY •• FEBRUARY 2019

By Tom McAulay

“SEX

, SEX, SEX! Now that I have your attention, here’s a report on our closed meeting which had sex as a topic.” (Issue 5, Feb. 1987) This is the title and introduction of the first article I was able to find in our archives of society newsletters (the original predecessor to this magazine). It goes on: “Most, if not all of us, went into shock upon diagnosis, and the thought of sex was the last things on our minds. However as time went on, we noticed that we weren’t dead, and neither were other parts of our anatomies (although some report a certain degree of comatoseness).

At this point, some people opt for celibacy, others go it alone, and still others face the perils of the social whirl and the anxieties of rejection. Sure, we know about safe sex, and the fact that we’re no more infectious than almost half the gay men around (maybe even less), still, most of us felt like damaged goods. “Who would want to sleep with me?. We wondered (but as one of our members pointed out that’s how we felt before diagnosis anyway). We also wondered, how does one bring up the subject tactfully when with someone interesting (on the other hand, saying, “I have AIDS” is not a commonly used line; so it does have the virtue of novelty). One useful suggestion, from those of us who have tried it, is to visit San Francisco. Since they’ve dealt with the situation longer and on a larger scale, having AIDS is no big deal, or at least not important enough to get in the way of things that really count like relationships. Strictly speaking, (and the stricter the better, I say,) the topic of sex is different from the topic of sex; but it seems that, most people really want a meaningful (hate that word) relationship with emotional intimacy, rather than just slam-bam sex (on the other hand, some of us, though not many, are just horny).

In the final analysis, everyone, from those of us who are vanilla, to those of us who are interesting (I have never claimed to be unbiased), felt that it was interesting and even beneficial to discuss the whole area of sex and relationships. So no doubt they will continue to come up as topics for future meetings (probably ad infinitum).”

Okay, so there’s a lot there that I wish to address. First, I must acknowledge that this article, and my own experiences, are those of a gay male. I do not pretend to speak to the sexual experiences of other groups.

Curiously, this was the only article I could find in the early editions of the newsletter on the topic of sex. I found one associated article with references to intimacy and “unconditional love.” (Issue 3, Dec 86 – Sleeping Buddies, excerpt from a letter to Rick) and the another direct reference to sex in the form of personal ads (Issue 9, June 87). Neither lasted as an ongoing feature; too bad because I had a good laugh at the ad where a “GWM/PWARC looking for a top/daddy/master who can be hard yet soft” ended with “the offer still stands for you Bob at A/V.” We can’t behave like that at the office anymore!

It was not until 1991 (Issue 51, Oct/Nov 91—SAFE SEX SURVEY) before another article, even remotely or otherwise, related to sex appeared. I did not search exhaustively through past issues, but when I got to 1992, it was clear there was little written on sex during the epidemic’s first decade.

What this screams loud and clear to me is what I consider to be the great conundrum of our epoch: the ‘sex sells everything vs. sex morality’ paradigm. We are bombarded with daily messages that sex is good, desirable, and readily available; on the other hand, societal morality and religious doctrine decree that sex outside the sanctity of marriage or for pleasure is shameful or even dirty.

This is so eloquently stated above where “still others face the perils of the social whirl and the anxieties of rejection.” What struck me while reading that line was that it was written in 1987—when men met other men face to face in a bar or on the beach or in a park. In my experience, by the time I got to speak to the guy whom I was cruising, or who was cruising me, a number of non-verbal clues of interest were already established—the nod of a head, wink of an eye kind of thing. I knew that the guy was interested in me before we ever said a word. I never experienced rejection until the anonymity of cyberspace came along. With the Internet comes a whole new level of rejection the likes of which could not have been imagined pre-online dating—one that

P5SITIVE LIVING | 20 | JANUARY •• FEBRUARY 2019

LET’S TALK ABOUT SEX, BABY I am sad to say I am all too acquainted with now.

The next interesting thing I noted from that article was the issue of disclosure. Until the Internet changed the way I conducted my sexual searches, the novel approach of just being up front with my diagnosis was exactly how I dealt with this dilemma. I was disclosing my probable HIV-positive status about two years before I got my test result. (I just figured that my 10 year-plus history of unprotected sex as a total bottom put me firmly in the danger group.) But even after diagnosis confirmation, I still disclosed to every potential sexual partner, even well into the age of online dating. And that is when I first began to experience rejection in a major way. Funny how that when I met men face to face nobody rejected me for my HIV status, and yet, once the façade of cyberspace allowed people to hide behind a delete button and remain anonymous rejection runs rampant.

The other standout point in the older article was the suggestion to visit San Francisco to learn how to deal with disclosure issues “since they’ve dealt with the situation longer and on a larger scale.”

In 1987, the term barebacking had yet to be coined or had just been invented … in San Francisco. Barebacking refers to the practice of having penetrative sex without using a condom. This term was used by gay men in San Francisco who wanted to disclose their HIV status in public to find other HIV-positive men looking for sex without the whole bar finding out who had AIDS. Because it was believed that once infected with HIV one could not become re-infected with HIV,

Poz on Poz sex didn’t really need to play safe. This was our secret code word that was supposed to protect us from unwanted disclosure and potential harm.

It didn’t take long for this ‘members only’ code to get perverted.

Before long, HIV-negative men decided that it was their God given right to have bareback sex with other HIV-negative men. Barebacking became a way to reject HIV-positive men rather than the way to find other HIV-positive men. This has always confounded me. I mean this is the antithesis of safer sex practices and because not everyone is going to be completely honest, it’s quite foolish to believe that someone is truly HIV-negative just because they say it. So, for someone to forego safer sex just because some hottie here says he is safe or “clean” (now there’s a word I hate when referring to my status) just doesn’t make sense.

We talk a lot about the right to have sex, but not a lot about having the right kind of sex. That is healthy, mutually consensual sex and whatever kind of sex one finds desirable. It’s like we think we’ll be judged by what we desire and feel that we must hide it. This for me is evidenced by the lack of articles from the past and, dare I say, the lack of discussion still evident. Perhaps we can try to start changing this today.5 Tom McAulay is chair of the Positive Living Society of BC.

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I-Score—Making Measurement Meaningful

By Sean Sinden

How

can clinicians accurately measure their clients’ concerns and opinions about antiretroviral treatment adherence? What is the best and most effective way to engage patients? These are the questions that led to the launch of the I-Score Study (CTN 283) in 2016.

This study was summarized in the May/June 2017 issue of Positive Living when enrollment began. Briefly, the study is developing and testing a tool to help clinicians understand, from the patient’s perspective, what makes treatment adherence difficult. The study investigators are developing what is known as a patient-reported outcome measure (PROM) related to treatment barriers. The tool will consist of an electronic questionnaire that is being developed with PLHIV and includes past research on adherence barriers.

The I-Score researchers knew that the most important aspect of this new tool would be that it was valued by the PLHIV who were providing the information. With this type of meaningful engagement in mind, researchers reached out to the community to form an advisory committee that would be involved in the project from the start.

A 10-member team was formed through ads at community organizations and health clinics and included a mix of different groups, ages, and experiences. Members participate in decision making, research, and evaluation relating to the study. Recently, the researchers and team members began a project to focus on evaluating how well team members were being engaged throughout the course of the I-Score study. To measure the level and quality of patient engagement in the study, the team participated in a series of open-ended group meetings and answered questionnaires.

The results were published in Health Expectations (October 2018). Results showed that patient engagement increased over time and highlighted the importance of self-determination and a collaborative approach to the research process. The project members also felt that, after participating in a research project, they improved their general communication skills, ability to support their peers

in treatment adherence, and personal adherence skills, such as discussing known barriers and side-effects with their care provider.

This process provided ongoing assessment of patient engagement in the early stages of a research study. The opportunity to engage community members throughout the process will indeed lead to a more successful and useful measurement tool at the end of I-Score, but also serves as an example for meaningful collaboration. 5 Sean Sinden is the communications and knowledge translation officer at CTN.

Other Studies enrolling in BC CTN 222

Canadian co-infection cohort BC site: St. Paul’s

CTN 262

Canadian HIV Women’s Sexual and Reproductive Health Cohort Study (CHIWOS) BC Coordinator: Rebecca Gormley, 604.558.6686 or rgormley@cfent.ubc.ca

CTN 281

EPIC 4 Study BC site: BC Women’s Hospital and Health Centre

CTN 283

The I-Score Study BC site: Vancouver ID clinic

CTN 292A

Development of a screening algorithm for predicting highgrade anal dysplasia in HIV+ MSM BC site: St. Paul’s

CTN 292B

Treatment of high-grade anal dysplasia in HIV+ MSM BC site: St. Paul’s

Visit the CIHR Canadian HIV Trials Network database at www.hivnet.ubc.ca for more info.

P5SITIVE LIVING | 23 | JULY •• AUGUST 2018

For a full list of donors visit positivelivingbc.org

$5000+

Brian Lambert

LEGACY CIRCLE Peter Chung

$150 - $499

$1000 - $2499 CHAMPIONS Paul Goyan Fraser Norrie Jackie Yiu Joss J. de Wet Malcolm Hedgcock Paul Gross Blair Smith Don Evans

$500 - $999 LEADERS Cheryl Basarab Christian M. Denarie Cliff Hall Dean Mirau Emet G. Davis James Goodman Mike Holmwood Pierre Soucy Rebecca Johnston Robert Capar Ross Harvey Scott Elliott Stan Moore Elgin Lim

HEROES Katherine M. Richmond Brian A. Yuen Len Christiansen James Ong Bonnie Pearson Brian Anderson Darrin D. Pope Dena R. Ellery Gbolahan Olarewaju Glynis Davisson Gretchen Dulmage Jamie Rokovetsky Jean Sebastian Hartell Joel N. Leung John Bishop Keith A. Stead Ken Coolen Lawrence Cryer Lorne Berkovitz Mark Mees Maxine Davis Mike McKimm Pam Johnson Patrick Carr Ralph E. Trumpour Ralph Silvea Ronald G. Stipp

Ross Thompson Sergio Pereira Vince Connors William Granger Elizabeth Briemberg Barry DeVito George Schwab Jane Talbot Patricia Dyck Penny Parry Ron J. Hogan Susan C. Burgess Tom Mcaulay Wayne Avery Stephanie Tofield Glyn A. Townson Stephen French Dennis Parkinson Edith Davidson Jeff Anderson Larry Hendren Patricia E. Young Rob Spooner Carmine Digiovanni

John Yano Lisa Bradbury Sandra Bruneau Sharon E. Lou-Hing Tracey L. Hearst Zoran Stjepanovic Christine Leclerc Adrian Smith Adrienne Wong Chris G. Clark Chris Kean Heather Inglis Lindsay Mearns Lisa Raichle Miranda Leffler Tobias Donaldson Jason Hjalmarson

$20 - $149 FRIENDS Andrea Reimer Angela McGie Catherine Jenkins Hans-Krishna Von Hagen

P5SITIVE LIVING | 24 | JANUARY •• FEBRUARY 2019

To make a contribution to Positive Living BC, contact the director of development, Jason Hjalmarson.  jhjalmarson@positivelivingbc.org  604.893.2282

PROFILE OF A VOLUNTEER “Kirsten first volunteered for Positive Living BC at AIDS Walk 2016. Her amazing personality and skill set was quickly noted. We invited her to participate in a more impactful way.

Kirsten has supported our team with administrative tasks, and rallied her fellow Apple employees to join in and volunteer at various events. A joy to have around.”

Ken Coolen, Director of Fund Development

*Kirsten Bowles*

What volunteer jobs have you done with Positive Living BC? I have worked with other organizations doing mostly event management. I work with the Fund Development team and I supported coordinating volunteers for the 2018 AIDS Walk.

Why did you pick Positive Living BC? I had been wanting to volunteer somewhere. I went to the AIDS Walk and I had so much fun. The cause and people seemed like the right fit for me.

How would you rate Positive Living BC? 10! I’ve met some amazing people here!

What is Positive Living BC ‘s strongest point?

The passion of the people who work here, and all the amazing resources they provide to their members.

What is your favourite memory of your time as a volunteer at Positive Living BC? Watching the employees do drag performances, that was definitely memorable!

What do you see in the future at and /or for Positive Living BC? I hope to continue volunteering, and support more incredible events!

P5SITIVE LIVING | 25 | JANUARY •• FEBRUARY 2019

Where to find

HELP

If you’re looking for help of information on HIV/AIDS, the following list is a starting point.

For more comprehensive listings of HIV/AIDS organizations and services, please visit www.positivelivingbc.org/links

bA LOVING SPOONFUL

1449 Powell St, Vancouver, BC V5L 1G8  604.682.6325  clients@alovingspoonful.org  lovingspoonful.org

cAIDS SOCIETY OF KAMLOOPS

(ASK WELLNESS CENTRE) 433 Tranquille Road Kamloops, BC V2B 3G9  250.376.7585 or 1.800.661.7541  info@askwellness.ca  askwellness.ca

bAIDS VANCOUVER

1101 Seymour St Vancouver, BC V6B 0R1  604.893.2201  contact@aidsvancouver.org  aidsvancouver.org

bAIDS VANCOUVER ISLAND (Victoria)

713 Johnson Street, 3rd Floor Victoria, BC V8W 1M8  250.384.2366 or 1.800.665.2437  info@avi.org  avi.org

bAIDS VANCOUVER ISLAND (Courtenay)  250.338.7400 or 1.877.311.7400  info@avi.org  avi.org/courtenay

bAIDS VANCOUVER ISLAND (Nanaimo)  250.753.2437 or 1.888.530.2437

 info@avi.org  avi.org/nanaimo

bAIDS VANCOUVER ISLAND (Port Hardy)  250.902.2238  info@avi.org  avi.org/porthardy

bANKORS (EAST)

46 - 17th Avenue South Cranbrook, BC V1C 5A8  250.426.3383 or 1.800.421.AIDS  gary@ankors.bc.ca  ankors.bc.ca

bANKORS (WEST)

101 Baker Street Nelson, BC V1L 4H1

 250.505.5506 or 1.800.421.AIDS  information@ankors.bc.ca  ankors.bc.ca

bDR. PETER CENTRE

1110 Comox Street Vancouver, BC V6E 1K5  604.608.1874  info@drpetercentre.ca  drpetercentre.ca

bLIVING POSITIVE

RESOURCE CENTRE OKANAGAN 168 Asher Road Kelowna, BC V1X 3H6  778.753.5830 or 1.800.616.2437  info@lprc.ca  livingpositive.ca

bMCLAREN HOUSING

200-649 Helmcken Street Vancouver, BC V6B 5R1  604.669.4090  info@mclarenhousing.com  mclarenhousing.com

bOKANAGAN ABORIGINAL AIDS SOCIETY 200-3717 Old Okanagan Way Westbank, BC V4T 2H9  778.754.5595  info@oaas.ca  oaas.ca

bPOSITIVE LIVING

FRASER VALLEY SOCIETY Unit 1 – 2712 Clearbrook Road Abbotsford, BC V2T 2Z1  604.854.1101  info@plfv.org  plfv.org

bPOSITIVE LIVING NORTH

#1 - 1563 Second Avenue Prince George, BC V2L 3B8  250.562.1172 or 1.888.438.2437  positivelivingnorth.org

bPOSITIVE LIVING NORTH WEST

3862F Broadway Avenue Smithers, BC V0J 2N0  250.877.0042 or 1.866.877.0042  plnw.org P5SITIVE LIVING | 26 | JANUARY •• FEBRUARY 2019

bPURPOSE SOCIETY FOR YOUTH & FAMILIES 40 Begbie Street New Westminster, BC V3M 3L9  604.526.2522  info@purposesociety.org  purposesociety.org

bREL8 OKANAGAN

P.O. Box 20224, Kelowna BC V1Y 9H2  250-575-4001  rel8.okanagan@gmail.com  www.rel8okanagan.com

bRED ROAD HIV/AIDS NETWORK

61-1959 Marine Drive North Vancouver, BC V7P 3G1  778.340.3388  info@red-road.org  red-road.org

bVANCOUVER NATIVE HEALTH SOCIETY 449 East Hastings Street Vancouver, BC V6A 1P5  604.254.9949  vnhs@shawbiz.ca  vnhs.net

bVANCOUVER ISLAND PERSONS

LIVING WITH HIV/AIDS SOCIETY 1139 Yates Street Victoria, BC V8V 3N2  250.382.7927 or 1.877.382.7927  support@vpwas.com  vpwas.com

bWINGS HOUSING SOCIETY 12–1041 Comox Street Vancouver, BC V6E 1K1  604.899.5405  wingshousing@shaw.ca  wingshousing.org

bYOUTHCO

205–568 Seymour Street Vancouver, BC V6B 3J5  604.688 1441 or 1.855.968.8426  info@youthco.org  youthco.org

POSITIVE LIVING BC SOCIETY BUSINESS UPCOMING BOARD MEETINGS 2018

JOIN A SOCIETY COMMITTEE!

EVERY 2ND WEDNESDAY | 2 pm | 2nd Floor Meeting Room

If you are a member of the Positive Living Society of BC, you can join a committee and help make important decisions for the Society and its programs and services. To become a voting member on a committee, you will need attend three consecutive committee meetings. Here is a list of some committees. For more committees visit positivelivingbc.org, and click on “Get Involved” and “Volunteer”.

Reports to be presented >> January 23, 2019 Written Executive Director Report | PHSA Quarterly Reports | Director of Communications and Education | Executive Committee Update | Standing Committees | Membership Statistics | Events Attended

February 6, 2019

Reports to be presented >> Executive Committee Update | Board Evaluation Chart (1) | Director of Fund Development | Events Attended

February 20, 2019

Reports to be presented >> Executive Committee Update | Written Executive Director Report | Board Skills Chart (1) | Events Attended

March 6, 2019

Board & Volunteer Development_ Marc Seguin  604.893.2298

 marcs@positivelivingbc.org

Education & Communications_ Adam Reibin  604.893.2209

 adamr@positivelivingbc.org

History Alive!_ Adam Reibin  604.893.2298

 adamr@positivelivingbc.org

Reports to be presented >> Executive Committee Update | Standing Committees | Events Attended

Positive Action Committee_ Elgin Lim

March 20, 2019

Positive Living Magazine_Jason Motz

Reports to be presented >> Executive Committee Update | Written Executive Director Report | Director of Program and Services | Events Attended Positive Living BC is located at 1101 Seymour St, Vancouver, V6B 0R1.

For more information, contact: Mike Hedges, director of operations  604.893.2268 |  mikeh@positivelivingbc.org

Name________________________________________ Address __________________ City_____________________ Prov/State _____ Postal/Zip Code________ Country______________ Phone ________________ E-mail_______________________ I have enclosed my cheque of $______ for Positive Living m $25 in Canada m $50 (CND $) International Please send ______ subscription(s)

 604.893.2252

 604.893.2206

 elginl@positivelivingbc.org

 jasonm@positivelivingbc.org

ViVA (women living with HIV)_Charlene Anderson  604.893.2217

 charlenea@positivelivingbc.org

m BC ASOs & Healthcare providers by donation: Minimum $6 per annual subscription. Please send ____ subscription(s) m Please send Positive Living BC Membership form (membership includes free subscription) m Enclosed is my donation of $______ for Positive Living * Annual subscription includes 6 issues.

Cheque payable to Positive Living BC.

P5SITIVE LIVING | 27 | JANUARY •• FEBRUARY 2019

Last Blast Fishing for a Prince

By Denise Wozniak

I

was newly divorced and 49-years old when I landed on the dating scene for the first time in 18 years. I had heard about something called Plenty of Fish and was curious. What could possibly go wrong?, I thought. This is a question I’ve asked myself many times before—and later found out, that yes, plenty could and would go wrong.

I began looking at profiles. There were scores of men standing with their gun behind a newly killed deer or holding a fish. Really?

Then there were photos of men with a woman cropped out.

Really?? And there were the men who had photos of them when they were 25 but their age said 49. Really???

I noticed a man named Mau who was pictured playing a guitar and I gingerly pressed “like,” adding a short comment: “what songs do you like?” Within 24 hours there was an answer: “I write my own songs.” Okay! I found out he also liked to keep fit and was looking for a wife so that he wouldn’t have to move. Yikes!

Within a week, I told him I was HIV-positive. He was shocked and had lots of questions, but we continued to chat and became Facebook friends. It seemed Plenty of Fish did have its upside. That was until I met the second man.

“Michael” lived in my hometown. We met for lunch. This was when I realized that many POF men don’t look like their photographs. As we ate our food, he asked if I wanted to hear his fantasy. A little shocked at how fast the conversation was moving and wanting to look cool, I said “sure, what ya’ got?” He told me how he was a Maytag repairman coming to service my washing machine. I decided to use my get away card. “Maybe I should let you know something—I’ve got HIV.” He smiled. “It’s okay, I was with a woman with Chlamydia last week.” I said I had to get going. He asked me if there could be a date number two. I replied, “doubtful to non-existent.”

You might think that would be enough to put me off POF, but I soldiered on. There were men who wanted to tell me about how many women they had “serviced” and another who was messaging me from the basement suite across from my home.

The worst was a man who invited me for a game of pool at his house. (Ladies, let this be a caution for you). Everything went fine

until he placed his big “cue” on the table. I looked, tried not to be shocked, and hit a few balls down the pockets.

Don’t get me wrong, there were many nice POF men who continued to want to meet after I told them I had HIV. Any who suddenly didn’t message me anymore were best gone from my life. I judged when to tell people according to when I would tell them I had any other illness.

Mau moved to Costa Rica but he played happy birthday on his guitar for me each year. Then one day, he was gone. Silence.

A few months later that I saw sad messages on his Facebook wall.

“Remembering my friend,” “Can’t believe you’re gone.” Mau had been stung by a scorpion while camping and died from an allergic reaction. I was sad and missed the man I had never met.

Now, I’m happily married to an HIV-negative man. We met at a wedding and later shared our stories of the ones that got away. 5 Denise Wozniak is a Board Member of the Positive Living Society of BC.

P5SITIVE LIVING | 28 | JANUARY •• FEBRUARY 2019