Brittany Greene, BHSc Jessica Lax- Vanek , BHSc Karen Chung, BHSc Sofija Rans , BHSc

1. The Impact of HIV/AIDS criminalization on awareness, stigma and prevention in Ontario: A qualitative analysis of stakeholders’ perspectives Brittany Greene, BHSc Jessica Lax-Vanek, BHSc Karen Chung, BHSc SofijaRans, BHSc Allyson Shorkey, BHSc (c) Michael G. Wilson, PhD

2. Conflict of Interest • We declare that we have no conflicts of interest with regards to this study

3. Background • 1989 to 2009: 104 cases in Canada • 65% of cases in the last 6 years • 63% of cases resulted in convictions • In only 38% of convictions did transmission actually occur • 65% of those charged were males in heterosexual relationships • “leading some to describe the country as a world leader in HIV-related criminal prosecutions” • 1998: prominent case in Canada, R. v. Cuerrier • established the legal requirement of disclosure when engaging in an activity posing a “significant risk” of HIV transmission • Charges have ranged from assault to murder • Variety of views advocated in the media (Mykhalovskiy et al, 2010; Mykhalovskiy, 2011)

4. Methods – Systematic review • Searches: 11 databases (search terms HIV and criminal*), related article search using a key paper (Mykhalovskiy, 2011) and reviewed reference list of an earlier ‘rapid review’ on the topic (OHTN 2011) • Inclusion criteria: Address HIV criminalization and its impact on or relationship with prevention, awareness and stigma in high-income countries • Phase 1 • Search results independently reviewed by two reviewers for inclusion • Iteratively developed and applied coding framework to map the literature based type of literature, study design, population, jurisdiction and topics discussed • Phase 2 (primary literature only) • Data extraction (conducted by two independent reviewers) • Quality appraisal (STROBE for quantitative article and Attree and Milton’s checklist for the quality appraisal of qualitative research)

5. Methods – Qualitative study • Sample • Developed sample frame of executive directors, front-line workers from community-based HIV organizations in Ontario, Canada as well as policy/content experts • Selected a purposive sample • Data collection • Conducted one-on-one telephone interviews with each participant • Interview guide asked questions about: • Views and experiences • Impact (if any) on daily work/organization • Perceived impact (if any) on HIV awareness, prevention, stigma • Concerns about future impact • Data analysis • Used constant comparative methods to identify emerging themes • Collectively revised key themes as a team after reviewing all of the transcripts and coded the data using Nvivo-9

6. Results – Systematic review • Phase 1 • Literature included: primary research, policy/advocacy papers, theory/discussion papers, commentary/editorials and case reports • Literature focused mainly in Canada (33%) and the United States (30%) • Main topics discussed: Stigma (41%), HIV-specific laws (33%), Significant risk (32%), Justification of laws (32%) and Disclosure (26%) • Phase 2 • 16 primary research articles identified (11%) • 6 quantitative studies • 9 qualitative studies • 1 mixed methods

7. Systematic review – take home messages • Positive effects of criminalization are unclear • Uncertainty surrounding disclosure obligations causes confusion for PHAs and difficulty in counselling relationships • Potential negative public health repercussions of criminalization include placing sole responsibility on PHAs and disincentivizing testing • PHAs are wary of the legal system regarding HIV criminalization

8. Results – Qualitative Study • 14 participants interviewed (data saturation reached) • Participant information • Five executive directors • Five front-line workers • Four policy/content experts

9. Key Themes • Confusion regarding behaviours constituting “significant risk” • Negative impact of media • Impact on disclosure • Perceived decrease in testing rates • Negative impact on shared responsibility for safer sex • Recommendation of guideline development to ensure optimal use of criminal law

10. Confusion regarding behaviours constituting “significant risk” • “significant risk seems to be this kind of roller coaster that doesn’t really have any firm grounding” • “it [significant risk] really depends on the prosecutor, the judge, the investigators…so it’s a difficult thing to educate clients on.” • “look at viral load, look at whether a condom was used or not…also the importance of making sure that the law is organic and that it can change.” • “new prevention technologies that come up and the science is changing so fast, that the courts need to keep up to it.”

11. Negative impact of media • “it [the media] paints a picture of people living with HIV as being sort of malicious and intend[ing] to hurt others by not disclosing.” • “I mean, the question is, how much coverage is there of other HIV-related issues in the media?” • “It [the media] just undermines the public education, it undermines the anti-stigma campaigns, and it gives people a very one-dimensional view.” • “I think a lot of our clients see what’s in the media. That can sometimes be the catalyst for coming and talking to us about it…Sometimes, that can be the catalyst for further isolating.”

12. Impact on disclosure • “there might be people that more so do not want to disclose to people because they are afraid…if things happen in the relationships…they may be…criminally charged.” • “increase in the stigma that people living with HIV face in terms of negotiating sex between partners, consenting partners.” • “it does not take into account all the complexities that come along with that [disclosure]” • “pre-criminalization, post-criminalization, most people are really really cautious in terms of disclosing and using protection.”

13. Perceived decrease in testing rates • “They may be concerned that public health will now report them. There’s a misconception of public health working with police.” • “won’t get tested because of fear of what will happen if somebody finds out if they are HIV positive, and that further can contribute to the spread of HIV.” • “if they are positive and they’re not accessing services then they are putting themselves at risk for their health.” • “Whereas criminalization might put someone off, it’s probably a fairly minor reason. So the research into testing shows that there are quite a few other issues that are likely higher priority in people’s lives as to testing.”

14. Negative impact on shared responsibility for safer sex • “it [criminalization] creates the illusion in the larger public that all they need to do is rely on HIV+ people to tell them that they’re positive and otherwise they may not have to practice safe sex at all. And if that’s the lesson that’s being learned…then people are actually raising their risk levels and possibly raising transmission levels” • “be the person who is always having to talk about this, to be the person that has to disclose their status.” • “you need to see that it is difficult for someone who has HIV to disclose right up front and everybody has a responsibility to protect each other.”

15. Legislative Reform • “I think the law needs to be clarified, so the people living with HIV know what their legal obligation is. I think that the law needs to be interpreted and applied in a way that takes into account advances in medical science surrounding HIV and its transmissibility. And I think that police and prosecutors need to be given some guidance from provincial attorney general in the way the law should be used.” • “if there is a role for the law it’s when there is intent around harm and there is actual transmission of the disease.” • “I don’t think that the prosecutorial guidelines are going to make an impact on the frontline with police services and police officers who are directly dealing with this who don’t have the education and knowledge and understanding.”

16. Conclusions • Further primary research is necessary to understand the full impact of HIV criminalization laws • Guidance and clarification is imperative within the legal system • Changes at the level of law enforcement and within the media need also be addressed • Must ensure that criminalization laws are not hindering public health initiatives targeting awareness, prevention and anti-stigma

17. Acknowledgements and contact Information • I would like to thank my co-authors: Brittany Greene, Karen Chung, Sofija Rans, Allyson Shorkey and Mike Wilson • We are grateful to the Bachelor of Health Sciences program at McMaster University for providing funding to attend and present this work at AIDS 2012. • Further questions or comments please contact: • Jessica.lax.vanek@learnlink.mcmaster.ca