Subscribe to our RSS feed

Articles tagged with: OHTN

Nov14

In search of a level playing field

Wednesday, 14 November 2012 Written by // Guest Authors - Revolving Door, Ontario HIV Treatment Network - Research Categories // OHTN OHTN/PositiveLite.com, Research, Health, Treatment, Living with HIV, Revolving Door, Guest Authors, Ontario HIV Treatment Network

In Canada, is access to HAART/ARV therapy, HIV viral load testing or HIV medical care in general associated with demographic characteristics of people living with HIV? The Ontario HIV Treatment Network (OHTN)’s Rapid Response Unit files their report.

In search of a level playing field

This article first appeared on The Ontario HIV Treatment Network    (OHTN)’s website here.

Questions

1. In Canada, is access to HAART/ARV therapy associated with demographic characteristics of PHAs?

2. In Canada, is access to HIV viral load testing, or HIV medical care in keeping with established guidelines and standards, associated with demographic characteristics of PHAs?

Key Take-Home Messages

. In many Canadian studies, issues related to access to HAART are not addressed because it is assumed that everyone in the universal health care system has the access they need. However, most provinces provide only partial coverage for prescription drugs and individuals are responsible for any amount not covered through provincial health insurance plans (either through private insurance and/or out-of-pocket expense). More research must be conducted to uncover the barriers to accessing HAART given the financial barriers that some may face in accessing treatment.

. The demographic factors associated with adherence to HAART have been studied more fully and may be more applicable to the Canadian context where, theoretically, everyone has access to HAART.

. There are a large number of people with HIV who do not undergo viral load testing or CD4 cell count monitoring according to established guidelines, but most people access HIV care within one month of initial diagnosis. Most of the people who have difficulty accessing continuous HIV care belong to marginalized populations.

The Issue and Why It’s Important

On Friday 5 October 2012, the Supreme Court of Canada released two decisions regarding the criminal law obligation of PHAs to disclose their HIV status to sexual partners. Amongst other changes to the law, the Supreme Court decided that people living with HIV (PHAs) do not have a criminal law duty to disclose their HIV status to a sexual partner prior to sexual intercourse if: 1) a condom is used; and 2) the HIV-positive person’s HIV viral load is “low.” Thus, at least in the case of sexual intercourse, criminal liability is now contingent in part upon a PHA achieving HIV viral suppression (usually achieved through appropriate use of HAART, and access to quality HIV and healthcare), and being able to prove he/she had a “low” HIV viral load (established through HIV viral load test results) at the time of sexual intercourse.

 

Based on the details of this decision, it may disproportionately impact marginalized PHAs, which could include: women in abusive relationships, newcomers to Canada, members of African/Caribbean/Black communities, Aboriginal people, and other people who face challenges accessing health, social and legal services. Specifically, some may now face greater criminal liability due to: 1) inequitable access to HAART and HIV-related medical care, making it more difficult to achieve and sustain HIV viral suppression; 2) ability to access and adhere to HAART and HIV-related medical care, which has been found to be associated with certain demographic characteristics (e.g., race, ancestry, immigration status, gender, residence, substance use, mental health status, having suffered physical/emotional/psychological abuse, housing status, involvement in sex work, income level and source and history of imprisonment); and 3) inequitable access to viral load testing, which may impede one’s ability to receive proper defend themselves in criminal legal proceedings.

What We Found

Question 1: In Canada, is access to HAART/ARV therapy associated with demographic characteristics of PHAs?

In the context of Canada’s universal health care system, coverage for HAART for people with HIV/AIDS varies by province. While some Canadians have access to HAART free of charge, others incur expenses that must be paid for by private insurance plans or out-of-pocket. A large number of studies consider the impact of demographic characteristics on adherence to HAART, but few address the impact of these characteristics on access. In Ontario, a study of patients attending hospital-based, outpatient HIV clinics found that male and female patients did not experience differential access to HAART.(1) Both male and female patients were found to initiate HAART approximately 2.2 years following diagnosis, and both had similar average CD4 counts at the time of HAART initiation.(1) A study of injection drug users with HIV/AIDS found that marginalization from the healthcare system acts as a barrier to both access and adherence to HAART – because female injection drug users and more likely to be street involved and more likely to engage in survival sex, they are more likely than male injection drug users to face barriers to accessing HAART.(2) Another study found that among 153 women participating in survival sex in Vancouver’s Downtown Eastside, only 15% of those who had been diagnosed with HIV had ever initiated HAART, and only 9% were currently accessing HAART.(3) The women in this study indicated that the reasons they did not access HAART included fear of side effects (72%), inability to adhere to daily regimes (48%), inability to make regular medical appointments (55%), and fear that others would suspect their HIV status (46%).(3)

Question 2: In Canada, is access to HIV viral load testing, or HIV medical care in keeping with established guidelines and standards, associated with demographic characteristics of PHAs?

A larger number of studies assessed the impact of demographic factors on access to HIV viral load testing or HIV medical care according to established guidelines. The factors that were considered include demographic characteristics and other factors, including province or city of residence, injection drug use, age, sexual orientation, time since HIV/AIDS diagnosis, time since HAART initiation, viral load, education, number of drugs in a HAART regime, whether HAART is being accessed at all, ethnicity, CD4 count, and refugee status.

The International AIDS Society recommends that patients with HIV/AIDS undergo viral load testing once every three to four months.(4) In an Ontario-based study of more than 1,000 HIV-positive individuals, findings indicated that many people access care sporadically.(5) In other studies of people with HIV/AIDS in Ontario, it was found that 13-15% of patients underwent fewer than three viral load tests per year.(5, 6) In another Ontario-based study among people who underwent at least one viral load test between June and December, nearly 20% did not undergo at least two additional tests in the following year.(7) In the same sample of 10,930 HIV-positive patients, only 65% had undergone a viral load test within the last year, and only 55% had done so within the last six months.(7, 8) This study found that while the majority of men and women – 81% and 82%, respectively – underwent viral load testing within three months of their original HIV diagnosis, 10% of men and 7% of women did not undergo viral load testing within the first year following diagnosis.(7) Overall, the mean number of days between diagnosis and first viral load testing in this sample was 65 days.(7) While there is evidence that people with HIV/AIDS may not undergo viral load testing according to established guidelines, one study found that when HAART was prescribed in hospital-based HIV outpatient programs in Ontario, prescribing practices were consistent with guidelines established by the U.S. Department of Health and Human Services.(1)

Similarly, a study in Vancouver found that less than 5% of people who inject drugs had CD4 monitoring that was consistent with local guidelines.(9) People who inject drugs who were female, of non-Caucasian ethnicity, and use heroin daily were significantly associated with decreased frequency of CD4 cell count testing.(9) Use of methadone was associated with more frequent and regular CD4 monitoring.(9)

One study found that discontinuous care (i.e., care that was inconsistent with established guidelines) among HIV-positive women in Ontario was associated with identification as lesbian or bisexual, being a refugee, having discontinuous care in the previous year, or having experienced the lowest observed CD4 count within the last five years.(6) A national study found that injection drug use and non-receipt of HAART were independently associated with greater frequency of longer than recommended gaps between viral load testing.(10) This study also found that a gap between viral load tests of greater than nine months was more likely to occur in Ontario and Québec than in British Columbia, and among people who injection drugs; but less likely to occur among older people, men who have sex with women, people within their first year of accessing HAART, people taking HAART at the time of viral load testing, and people with viral loads of less than 50 copies/ml at their previous test.(10) Other factors that have been associated with less frequent viral load testing include lower educational attainment, history of injection drug use, younger age, residence in Toronto, and fewer drugs in the current HAART regime.(5) The greatest delays were observed among people who inject drugs, and people who were not currently accessing HAART – for each, the gap between tests was typically increased by 10 days (5). Few studies examined the impact of ethnicity on continuity of care, but one study in Ontario found no significant differences in continuity of care between Aboriginal and non-Aboriginal patients.(11)

One study also assessed how long people who had recently been diagnosed with HIV/AIDS waited before accessing care. It was found that the patients who waited the longest were younger than 45 years of age, lived in non-metropolitan regions, injected drugs, and engaged in heterosexual activity with high risk partners.(12) Typically, patients with these characteristics waited 31-32 days for care, compared to other patients who waited approximately 15-21 days for care.(12)

Factors That May Impact Local Applicability

Most of the studies included in this report were conducted in major cities in Ontario and British Columbia. Only one study was national in scope, and many provinces in central and Atlantic Canada had little representation. Further, it is difficult to study the population of people with HIV who are undiagnosed, and whether the reason they remain undiagnosed is related to access to care or treatment. The studies included here largely relate to people who have accessed HIV testing and care at least one time. The findings reported here may not be applicable to regions outside of Canada.

What We Did

We extracted relevant information from studies that were sent to us from the group (Ontario Working Group on Criminal Law & HIV Exposure) that requested this rapid response. Next, we contacted colleagues working in this area to see if they could identify any additional studies that might address either of the questions. We then conducted a related articles search using one study (5) that was directly relevant to the rapid response. Lastly, we conducted a search in PubMed using the following combination of search terms: ((viral load testing) or (access to HAART)) AND (Canada)).

© Ontario HIV Treatment Network ~ 1300 Yonge Street Suite 600 Toronto Ontario M4T 1X3 p. 416 642 6486 | 1-877 743 6486 | f. 416 640 4245 | www.ohtn.on.ca | This email address is being protected from spambots. You need JavaScript enabled to view it.

EVIDENCE INTO ACTION

The OHTN Rapid Response Service offers HIV/AIDS programs and services in Ontario quick access to research evidence to help inform decision making, service delivery and advocacy.

In response to a question from the field, the Rapid Response Team reviews the scientific and grey literature, consults with experts, and prepares a brief fact sheet summarizing the current evidence and its implications for policy and practice

References

1. Furler MD, Einarson TR, Walmsley S, Millson M, Bendayan R. Longitudinal trends in antiretroviral use in a cohort of men and women in Ontario, Canada. AIDS Patient Care STDS. 2006;20(4):245-57.

2. Tapp C, Milloy MJ, Kerr T, Zhang R, Guillemi S, Hogg RS, et al. Female gen-der predicts lower access and adher-ence to antiretroviral therapy in a setting of free healthcare. BMC Infectious Dis-eases. 2011;11:86.

3. Shannon K, Bright V, Duddy J, Tyndall MW. Access and utilization of HIV treat-ment and services among women sex workers in Vancouver's Downtown Eastside. Journal of Urban Health. 2005;82(3):488-97.

4. Hammer SM, Eron JJ, Reiss P, et al. Antiretroviral treatment of adult hiv in-fection: 2008 recommendations of the international aids society–usa panel. JAMA: The Journal of the American Medi-cal Association. 2008;300(5):555-70.

5. Raboud JM, Abdurrahman ZB, Major C, Millson P, Robinson G, Rachlis A, et al. Nonfinancial factors associated with decreased plasma viral load testing in Ontario, Canada. Journal of Acquired Immune Deficiency Syndrome. 2005;39(3):327-32.

6. Light L, Burchell AN, Gardner S, Benoit A, Tharao W, Rourke SB, et al., editors. Risk factors for being in discontinuous HIV care: An examination of women participating in the OHTN Cohort Study (OCS). OHTN Research Conference; 2012 2012.

7. Bayoumi AM, Degani N, Remis RS, Walmsley S, Millson P, Loutfy M, et al. HIV Infection. In: Bierman AS, editor. Project for an Ontario Women's Health Evidence-Based Report. Toronto2011.

8. Krentz HB, Worthington H, Gill MJ. Adverse health effects for individuals who move between HIV care centers. Journal of Acquired Immune Deficiency Syndrome. 2011.

9. Wood E, Kerr T, Zhang R, Guillemi S, Palepu A, Hogg RS, et al. Poor adher-ence to HIV monitoring and treatment guidelines for HIV-infected injection drug users. HIV Medicine. 2008;9(7):503-7.

10. Raboud JM, Loutfy MR, Su D, Bay-oumi AM, Klein MB, Cooper C, et al. Regional differences in rates of HIV-1 viral load monitoring in Canada: Insights and implications for antiretroviral care in high income countries. BMC Infectious Diseases. 2010;10:40.

11. Warren L, O'Brien-Teengs D, Zoccole A, Loutfy M, Benoit A, Gardner S, et al., editors. Engagement in Continuous Care between 1997 and 2009 among Aborigi-nal participants in the Ontario HIV Treat-ment Network Cohort Study (OCS). OHTN Research Conference; 2012 2012.

12. Plitt SS, Mihalicz D, Singh AE, Jayara-man G, Houston S, Lee BE. Time to test-ing and accessing care among a popula-tion of newly diagnosed patients with HIV with a high proportion of Canadian Abo-riginals, 1998-2003. AIDS Patient Care STDS. 2009;23(2):93-9.

Nov12

Researcher Trevor Hart featured on CANFAR’s Thinking Positive video series

Monday, 12 November 2012 Written by // Bob Leahy - Editor Categories // Gay Men, Research, Health, Living with HIV, Population Specific , Bob Leahy

Leading Canadian researcher and all round nice guy Trevor Hart talks to TV's Valerie Pringle about how the mind, sex are HIV connected.

Researcher Trevor Hart featured on CANFAR’s Thinking Positive video series

If you are active in the Canadian HIV community you may well know Dr Trevor Hart, or have learned of his work. If you don’t know him, the video which follows will position who he is and the important work he does, always side by side with representatives form the community, including people with HIV like me.  He's a nice guy. We’ve worked together on the Gay Poz Sex (GPS) program for HIV+ gay and bisexual men, in particular.

Dr. Hart is an Associate Professor in the Department of Psychology at Ryerson University and Adjunct Faculty at the Dalla Lana School of Public Health at the University of Toronto. Dr. Hart's research in HIV prevention and care spans a wide variety of fields, including health psychology, public health, clinical psychology, and community psychology.

His research focuses on:

  • identifying risk factors for unprotected sex among youth and adult populations at high risk for HIV, such as gay and bisexual men and homeless youth
  • examining the positive and negative relationships between physical health and psychological health among people living with HIV
  • designing and testing behavioural interventions that promote sexual and mental health and prevent HIV and STI transmission among populations at high risk for HIV and people living with HIV 

Dr. Hart is committed to pursuing research that is conducted with full community empowerment and engagement. For example, peer facilitators for the Gay Poz Sex study are not only research staff -- they are actively engaged in the continued success of the program, and through capacity building are becoming researchers in their own right.

Dr. Hart is supported by an OHTN Career Scientist Award until 2016.

In the video which follows, the second of CANFAR’s series with TV journalist Valerie Pringle interviewing, Dr. Trevor Hart, sat down with CANFAR to discuss his work on the psychological aspects of HIV. Watch his insightful interview to learn more about how he’s using psychological research to help promote sexual health and HIV prevention.

A link to the CANFAR web-page on which this also appears is here

Nov12

The Smoking Project with Sean Rourke

Monday, 12 November 2012 Written by // Bob Leahy - Editor Categories // OHTN OHTN/PositiveLite.com, Features and Interviews, Health, Smoking Cessation , Living with HIV, Opinion Pieces, Bob Leahy, Ontario HIV Treatment Network

Today marks the unveiling of an important collaboration between ourselves and the OHTN designed to bridge research and action, to improve the health and well-being of people living with HIV who smoke. Here Bob Leahy interviews OHTN head Sean Rourke.

The Smoking Project with Sean Rourke

Many people will know Dr. Sean Rourke, Scientific and Executive Director of the Ontario HIV Treatment Network (OHTN). He’s approachable, eloquent and clearly highly committed. You’ll get a sense of all that in the video which follows where he talks about The Smoking Project.

I don’t want to paraphrase what he says, but one of the frustrations of anyone involved in the research field must be the historic difficulty of turning research in to practice. “I think the OHTN’s role is to provide the evidence to make healthy choices” he says in the interview below, “not just to look at the problem but the solution.”

In the interview you’ll see that the OHTN, in collaboration with PositiveLite.com, is taking that evidence-based approach to health promotion one step further with The Smoking  Project, announced today at the OHTN Research Conference.  It comes from the recognition that people living with HIV have much higher smoking rates than in the general population, often for good reason, but the impact on PHA health, longevity and quality of life needs to be addressed. That's a wellness issue whose solution will, I think, comfortably fit in to the variety of other solutions to help people living with HIV live healthier and longer that we already provide.  And an important one too. Many experts would say, in fact, that stopping smoking is the best thing someone living with HIV can do for their health, bar none.

So far, things like smoking cessation programs have not been widely offered or  even referrals made, by organizations that serve people living with HIV, or to any great extent, by their doctors. The Smoking Project wants to change that, while coming from a place that recognizes that people living with HIV need solutions tailored to their history and their circumstances. That often includes  support.

We here at PositievLite.com have aired more than a few articles on the issue of smoking and HIV in the last few months.  We’re not anti-smoking zealots. Rather we recognized, after carefully reviewing the research, including the OHTN’s, that there is an unmet need here.  So we decided some time ago  to put a  spotlight on an issue that hasn’t hereto been given the attention it deserves

But more than just highlighting the issue, we are delighted to be teaming up with the OHTN on this joint initiative. You’ll see both our logos on project material, and both Sean and I will be playing an active part in the project’s leadership.

That we are partners with the OHTN  on this initiative marks, of course, a significant step in PositiveLite.com’s evolution, which makes us both happy and proud. Like the OHTN we are not just interested in identifying what are the unmet needs in the community we are so much part of, we want to be part of the solution too.

In any event, why talk more?  As I said at the beginning, Sean is an eloquent speaker. I’ll let him tell you about The Smoking Project.

Nov05

Webinar: HIV and mental health: New thinking, new strategies

Monday, 05 November 2012 Written by // What's Up Categories // Community Events, Events, Mental Health, Research, Health, Treatment, Living with HIV, Revolving Door, Events, Guest Authors

ACT’s third Community Health Forum in the current series is on new thinking and strategies with regard to HIV and mental health. Attendance is free. The forum will also be available as a webinar.

Webinar: HIV and mental health: New thinking, new strategies

The third workshop in the current series of free open discussion forums for people living with HIV hosted by the AIDS Committee of Toronto (ACT) will be held on Wednesday, November 14, 2012 at 7:00 pm at the Ramada Plaza Hotel, 300 Jarvis Street in Toronto.  The topic this month is HIV and mental health: New thinking, new strategies.

Topics to be discussed at this forum include: 

  • Mental illness is common in HIV, whether present before infection or as a complication of living with HIV
  • Optimizing mental health improves compliance with HIV medications
  • Reduction of high-risk activities improves health and quality of life
  • Client tracking 

The guest speakers will be:

  • Dr Evan Collins, psychiatrist at the Immunodeficiency Clinic at Toronto General Hospital
  • Dr Jennifer Grochocinski, naturopathic doctor

The workshop will be webcast live so those who cannot attend in person can participate in the event online. The forum and the webcast will begin promptly at 7:00 pm and last two hours. 

To join the live webinar: login at 7:00 pm EDT on November 14 (00:00 UTC, November 15) at www.actoronto.org/forum.   

The forum will also be recorded and should be available for viewing on the day following the event at the same website: www.actoronto.org/forum. 

This forum and webinar are free and no registration is required. For those attending in person, a light buffet will be available from 6:00 pm. 

For more information, see the flyer below or contact Robin Rhodes at This email address is being protected from spambots. You need JavaScript enabled to view it. or 416 340 8484 ext. 219. 

Oct01

New insights in HIV management and strategies for a cure

Monday, 01 October 2012 Written by // Guest Authors - Revolving Door, What's Up Categories // Community Events, Events, Health, Treatment, Living with HIV, Revolving Door, Events, Guest Authors

ACT’s second Community Health Forum in the current series is on new insights in HIV management and strategies for a cure. Attendance is free. The forum will also be available via webcast.

New insights in HIV management and strategies for a cure

The second workshop in the current series of free open discussion forums for people living with HIV hosted by the AIDS Committee of Toronto (ACT) will be held on Wednesday, October 10, 2012 at 7:00pm at the Ramada Plaza Hotel, 300 Jarvis Street in Toronto. 

The topic this month is New insights in HIV Management and Strategies for a Cure. The forum will address questions such as: 

  • What is the current problem with curing HIV infection?
  • Reservoirs and immune containment.
  • What should we do in the future? 

ACT has lined up a distinguished panel of experts to present on this topic, including Dr. Tae-Wook Chun from Johns Hopkins University, who is one of the world’s leading experts in this field. 

The workshop will be webcast live so those who cannot attend in person can participate in the event online. The forum and the webcast will begin promptly at 7:00 pm and last two hours. 

To join the live web cast: login at 7:00 pm EDT (23:00 GMT) on October 10 at www.actoronto.org/forum.    

The forum will also be recorded and should be available for viewing on the day following the event at the same website: www.actoronto.org/forum. 

This forum is free and no registration is required. For those attending in person, a light buffet will be available from 6:00 pm. 

For more information, see the flyer below or contact Robin Rhodes at This email address is being protected from spambots. You need JavaScript enabled to view it. or 416 340 8484 ext. 219. 

 

RELATED ARTICLES

How to live well with HIV, John McCullagh’s interview with Robin Rhodes about ACT’s community health forums.

Sep25

Show Me The Love – Part One

Tuesday, 25 September 2012 Written by // Megan DePutter - Life Categories // Research, Health, Sexual Health, Living with HIV, Sex and Sexuality , Megan DePutter

What are the barriers to intimacy, sex and relationships that people living with HIV can face? The AIDS Committee of Guelph and Wellington County set out to answer that question. Here’s Megan DePutter’s report.

Show Me The Love – Part One

In the interview with Bob Leahy, Editor, PositiveLite.com that you can watch below, I share some of the findings from the community-based research project we recently completed at the AIDS Committee of Guelph & Wellington County (ACG). It’s called Show Me the Love:  Understanding the Barriers to Sexual Intimacy among People Living with HIV & AIDS. You may have read my earlier post describing the project, or Wayne Bristow’s account of being an interview participant in the project.

We have completed the project, This blog post will provide a snapshot of our findings and my thoughts about them for PositiveLite.com readers; a full report can be downloaded here

This project was funded by a Capacity Building Fund for Community-Based Research by the Ontario HIV Treatment Network (OHTN), which is important to know because the values and principles of community-based research guided our project from the get-go, including a commitment to involving members of our community – including people living with HIV – from the very beginning. This was a terrific opportunity for all of us, as it gave our clients and community the opportunity to be involved in a research project that was very different from the “ivory tower” kind of academic research they may have become disenchanted with.

This project was to help us at ACG understand the barriers to sexual intimacy faced by our clients, people living with HIV. Why this topic? We’d heard, at ACG, for over 10 years – longer than I myself have been employed at the agency – from people who have struggled to meet, disclose, and maintain fulfilling relationships. We recognized that many of our clients face prohibitive barriers to sexual intimacy, and we wanted to better understand the challenges our clients were facing in order to help support them.

We used a face-to-face, qualitative semi-structured interview technique, and a thematic analysis was used to interpret the data, which included a data validation follow-up session with the participants. Eighteen participants were interviewed. For more details about who participated, you can read the report.  But for now, let’s skip to the juicy stuff: the actual findings.

What did the Research Find?

First and foremost, our participants experienced barriers to sexual intimacy related to their HIV status. During the interviews, the participants expressed a number of barriers that significantly intruded upon their ability to experience sexual intimacy, sometimes leading to celibacy, as a choice or as a default. Across cohorts of gender, sexual orientation and relationship status, participants described a number of barriers that related to HIV status, often centring around stigma and fear, while other experiences such as trauma, aging, and lack of connectedness to a gay community further complicated matters. 

The findings are fleshed out in a broader discussion in the report, along with other issues you may find interesting – including criminalization, resilience and other topics. Here are the more pertinent five findings that address key barriers to sexual intimacy.

1. Fear of transmission

In simplest terms, fear of HIV transmission created a barrier to sex, and in many cases participants adopted a celibate lifestyle to avoid HIV transmission. Sometimes participants had an exaggerated sense of risk, while others feared transmission even if they knew the risk was low. The “what if” scenarios these participants described carried more weight than the actual likelihood of transmission. This fear led participants to dismiss reassurances from their doctors as well as from their partners. Often they reported that a partner’s reassurance and willingness to take the risk was not enough to overcome their fear. Imagining the potential harm and guilt they would feel if their partner acquired HIV outweighed everything else. The fear of transmission led participants to avoid sex, despite the availability of condoms, undetectable viral loads, treatment adherence, or other ways of making sex “safe.”

2. Fear of rejection

Fear of rejection was sometimes associated with delaying disclosure or avoiding disclosure altogether by avoiding intimacy. However, many participants talked about needing to be up front about HIV, reporting that they told potential partners about their status right away. For some, this strategy was associated with the desire to “weed out” anyone who would reject them.  This strategy was used to prevent attachment in case of rejection. Participants characterized this strategy as “self-preservation”. Participants’ fear and struggles with disclosure were well-founded. Some participants shared rejection experiences, including having partners respond with anger or having partners turn away.

3. Social isolation

Putting up barriers, while a way to protect one’s self from being rejected, was also related to social isolation, which was a barrier to sexual intimacy. Avoiding relationships and sex was connected to experiences of isolation. Participants described putting up their own barriers to avoid getting close to someone. These “self-preserving” barriers were intertwined with experiences of stigma and uncertainty. For these participants, isolation appeared to be easier to manage than rejection.

4. Challenges in meeting new people/potential partners

The experiences of the gay/bisexual men in the sample show how living in a midsized city or rural area can be isolating. According to the participants, the city of Guelph and surrounding county lacks the presence of a strong gay community. Many reported that it is not easy meeting new people, especially as one gets older. There was the sense that one lives with the ‘triple jeopardy’ of being gay, living with HIV, and being middle-aged. The gay male participants frequently spoke of ageism in the gay community. Being older, or “middle-aged”, was another stigma on top of living with HIV. 

Challenges to meeting new people were further connected to the financial constraints imposed by living with HIV. A few participants noted that having less income meant that they cannot afford the usual ways of meeting sexual partners by going to bars or being able to go out on dates. Limited income also meant that it can be difficult to maintain good self-presentation since going shopping for clothes or going to the gym was unaffordable. Far from insignificant, these constraints had a negative impact on how participants in these circumstances felt about themselves.

4. Negative self-perception

In addition to the experiences of stigma and fear of being rejected, participants expressed concerns about physical changes and relayed a diminished sense of body image. Participants described changes to their bodies that were related to aging and to living with HIV, from the disease itself and from HIV medications. These changes diminished their sense of body image, which further inhibited their desire to be sexually intimate. They expressed concerns about whether others would find them attractive. Feeling badly about one’s self and discomfort with one’s own body was connected to avoiding sexual intimacy. 

My own thoughts.

I could offer some further analysis of these findings, but I will let those interested read the report. Instead I would prefer to add a personal commentary.  

One of the things that really struck me is that the research participants are carrying an enormous burden of responsibility, to be the one who manages risk in a relationship – and that includes emotional as well as physical risk.  It is a huge burden to shoulder.  Sometimes, it is just easier to just bow out of the game completely, rather than having to deal with the deluge of emotions that come from disclosing, or from engaging in sexual activity.   

When we discuss criminalization of HIV non-disclosure, one of the themes that emerges is that sex does not seem to be a shared partnership when it comes to risk management. Under the law, the burden of proof lies with the HIV-positive person, and so does the burden of disclosure. Is it possible to shift this balance so that sex becomes a more of an equal partnership when it comes to decision making around risk?

Stigma clearly wove itself through the data; both enacted and internalized stigma deeply affected the sexual experiences of the participants.  Stigma posed a huge threat to the wellbeing of the participants, and is probably the leading culprit in disrupting the sex lives of people living with HIV.  The fact that we need to address stigma in our communities is not surprising, but it is an important reminder that we need to work hard to reduce stigma - and address deeply internalized stigma as well.  Rejection and trauma affects people long after the incident is over.

The last comment I would like to offer is intertwined with one of the reasons I was invested in the research project in the first place, and that has to do with the recognition that sex is an important element in the quality of life.  In the Denver Principles, which I cite during the interview with Bob, People with AIDS are named as having the right to “a satisfying a sex life as anyone else.” As service providers, it is important that we honour that principle.  We invest a lot into HIV prevention efforts. But if we also have the goal of supporting people living with HIV, and believe that Positive Prevention includes goals such as nurturing the health, dignity and wellbeing of PHAs, then we need to acknowledge that having sex is an important part of life. We can’t forsake the importance of sex to prevention, and we can’t assume that everyone who wants to have sex is able to do so, either.  HIV brings forth certain realities, and is intertwined with life experiences that may come together that create formidable barriers to sex, and by extension, relationships. Celibacy is an understandable choice, but – let’s be honest – isn’t really a satisfying lifestyle for anyone.

What I haven’t mentioned in this miniaturized version of the findings, is that we allowed our participants to define their optimal sex life for themselves, imposing no assumptions about what the preferred kind of sex life may look like. But – and perhaps this had to do with the age of the participants - everyone described their optimal experience as having a single, monogamous, partner, and many people also described wanting a component that included other forms of physical contact.  In this research, participants were not only missing sex – a significant loss in itself – but also partnership, romantic love, and other forms of intimacy.

Some of the lessons we learned from this research around resilience included an important piece around community-building and less traditional models of peer-support.  My hope is that we can use this research as a springboard for further communication and work to address the issues around loss of sex, loneliness and isolation for people living with HIV.  

MarketPlace