TRANSFORMING HIV PREVENTION & CARE FOR MARGINALISED POPULATIONS Using information & communication technologies (ICTs) in community-based & led approaches ____________________________________________________________________________ Edited by Christopher S Walsh 2015 Published by Digital Culture & Education (DCE) Transforming HIV Prevention and Care for Marginalized Populations: Using information & communication technologies (ICTs) in community-based & led approaches by Christopher S Walsh is licensed under a Creative Commons Attribution 4.0 International License. You are free to: • Share — copy and redistribute the material in any medium or format for any purpose, even commercially. The licensor cannot revoke these freedoms as long as you follow the license terms. Under the following terms: • Attribution — You must give appropriate credit, provide a link to the license, and indicate if changes were made. You may do so in any reasonable manner, but not in any way that suggests the licensor endorses you or your use. • NoDerivatives — If you remix, transform, or build upon the material, you may not distribute the modifed material. Original cover artwork by Liam Kenny All chapters have been double blind peer-reviewed by members of the Digital Culture & Education (DCE) Editorial Board Contents Preface i Kevin Osborne Forward ii Susannah Allison Introduction 1 Christopher S Walsh, Darrin Adams, Kent Klindera and R. Cameron Wolf Part 1 1 The HIVe: Harnessing digital technologies to challenge the dominant HIV and AIDS 14 paradigm Judith D. Auerbach, PhD 2 Local languages, global exchange: Digital networking, communication and 20 collaboration for the health and human rights of men who have sex with men Jack Beck, Lily May Catanes, Pato Hebert, Goldie Negelev & George Ayala 3 The use of the Internet in male sexual encounters by men who have sex with men 40 in Cameroon Emilie Henry, Yves Yomb, Lionel Fugon & Bruno Spire 4 ICT & HIV prevention: Experiences from a biomedical HIV prevention trial among 53 men who have sex with men (MSM) in Cape Town, South Africa Andrew Scheibe, Ben Brown & Linda-Gail Bekker 5 Digital media and the Internet for HIV prevention, capacity building and advocacy 65 among gay, other men who have sex with men (MSM), and transgender (TG): Perspectives from Kolkata, India Rohit K. Dasgupta 6 Innovative digital HIV and AIDS education and prevention for marginalised 89 communities: Philadelphia’s Frontline TEACH Val Sowell, Juliet Fink & Jane Shull 7 The social technographics of gay men and other men who have sex with men 106 (MSM) in Canada: Implications for HIV research, outreach and prevention Dan Allman,Ted Myers, Kunyong Xu & Sarah Jane Steele 8 Sexperts! Disrupting injustice with digital community-led HIV prevention and legal 126 rights education in Thailand Nada Chaiyajit & Christopher S Walsh 9 When in Ghana, do as sexual minorities do: Using Facebook to connect gay men 148 and other men who have sex with men(MSM) to HIV Benjamin Eveslage 10 YouTube viral videos and HIV prevention among African-Americans: Implications 174 for HIV prevention Jocelyn D. Patterson & Khiya J. Marshall 11 Variations in recruitment yield, costs, speed and participant diversity across 186 Internet platforms in a global study examining the efficacy of an HIV/AIDS and HIV testing animated and live-action video among English- or Spanish-speaking Internet or social media users Winnie Shao, Wentao Guan, Melissa A. Clark, Tao Liu, Claudia C. Santelices, Dharma E. Cortés& Roland C. Merchant Part 2 12 Achieving HIV risk reduction through HealthMpowerment.org, a user-driven 211 eHealth intervention for young Black men who have sex with men and transgender women who have sex with men Kathryn E. Muessig, Nina B. Baltierra, Emily C. Pike, Sara LeGrand & Lisa B. HIghtow-Weidman 13 Assessing needs and capabilities: Towards an ICT resource to support HIV- 231 positive gay men and other MSM in Southeast Asia Benjamin Hanckel, Laurindo Garcia, Glenn-Milo Santos & Eric Julian Manalastas 14 “Hidden on the social media”: HIV Education on MSM through Cyber-educators in 246 Central America Jorge Rivas, Jennifer Wheeler, Marcos Rodas & Susan Lungo 15 Reaching men who have sex with men in Ghana through social media: A pilot 259 intervention Kimberly Green, Phillip Girault, Samuel Wambugu, Nana Fosua Clement, & Bashiru Adams 16 Two internet-based approaches to promoting HIV counselling and testing for MSM 266 in China Matt Avery, Gang Meng & Stephen Mills 17 Resistance to the Swedish model through LGBTQ and sex work community 281 collaboration and online intervention Nicklas Dennermalm 18. Bambucha media: Using social media to build social capital and health Seeking 295 behaviour among key populations Collins M. Kahema, John Kashiha, David Kuria Mbote & Michael R. Mhando 19 Silueta X: Lobbying to establish a LGBTI counseling and medical Center in 309 Ecuador Diane Maria Zambrano Rodríguez 20 Interview with Carl Sandler, CEO of MISTER ® 323 Interview with Carl Sandler Author Biographies 329 Preface Introducing Transforming HIV prevention & care for marginalised populations: Using information & communication technologies (ICTs) in community-based & led approaches The very notion of the ‘end of AIDS’ is an ideal that many people—communities, researchers, policymakers and programmers—have tirelessly strived for over many years. Turning this into a living reality is predicated on applying lessons creatively with ‘out of the box’ thinking and ensuring that communities at the forefront of the epidemic are a key part of the response. This is especially true with rapidly evolving online environments where populations most affected by HIV and AIDS now frequently connect and communicate, from reaching key populations who meet partners and clients online to ensuring that prevention and care messages and services meet the demands of today’s online reality. We are only 20 years into the digital revolution, but now is the time to "upload" our HIV research, service delivery, and programming approaches to this virtual environment. This open-access and online book edited by Christopher S Walsh is highly welcomed and timely. Its contributors address in succinct and practical ways, the challenges and opportunities of using information communication technologies (ICTs) to improve HIV outcomes among especially marginalised communities. Any researcher, programmer or practitioner working towards an “AIDS-free generation” should read this agenda-setting book, for in equal measure this resource enlightens and educates. It also instigates and inspires. Kevin Osborne Project Director LINKAGES FHI360 i Forward Powerful tools to reach and engage marginalized individuals in HIV prevention and care Information and communication technologies (ICTs) offer powerful tools to reach and engage marginalised individuals in HIV prevention and care. This book provides a compilation of strategies for how best to reach and engage gay, bisexual and other men who have sex with men (MSM) and transgender persons around the world, people who have historically been excluded from many of these efforts. It has been almost 20 years since I started work as a clinical psychologist with children and families affected by HIV and AIDS. It was a different time in the HIV epidemic. The early and mid-1990s had brought a number of strides in HIV prevention and treatment that were literally life-saving, for example the discovery of the ability of antiretrovirals (ARV) to prevent mother to child transmission (PMTCT; Connor, Sperling, Gelber et al., 1994) and the advent of triple ARV drug therapy to effectively treat individuals living with HIV (Hammer, Squires, Hughes, et al., 1997; Gulick, Mellors, Havlir et al., 1996). Individuals living with HIV now had access to treatments that worked, at least in the United States, and HIV began to shift from a lethal disease to a chronic illness. This new era, however, brought new challenges. While we knew how to treat HIV and prevent MTCT, we struggled with determining when individuals should start treatment, how to help them stay on therapy and we still had only a limited number of strategies to prevent new HIV infections. We had few tools at our disposal to address these challenges, but we used what we had. I handed out numerous pillboxes, saw families for therapy to address the challenges in their lives that hampered medication adherence, purchased and programmed countless watches with alarms, and printed charts that I handed out with stickers. I even had a colleague who called a family every day to make sure that they had given their son his medication. Not only were there limited tools at our disposal but also limited ways in which we could reach and work with families. Appointments took place at the clinic or hospital, requiring families to come to us during clinic hours outreach services were available but the demand far exceeded the supply forcing outreach workers to focus on families in crisis, not those struggling with maintaining adherence. The last few years have brought yet another set of life-saving advances in both HIV treatment and prevention. We now have confirmation that HIV treatment should start immediately after diagnosis (The INSIGHT START Study Group, 2015) and we know about the power of ARVs to prevent the onward transmission of HIV among those living with HIV (Cohen, Chen, McCauley et al., 2011) and prevent acquisition among those who are HIV- but exposed (pre-exposure prophylaxis or PrEP; Grant et al., 2010). In addition to all of this new knowledge, we have more tools at our disposal to reach those not traditionally engaged in HIV prevention and care. Mobile technologies are growing exponentially all over the world helping to overcome barriers due to weak infrastructure. In 2013 there were 778 million mobile subscriptions in Africa and that number is projected to reach 1 billion during 2015 (Informa Telecoms & Media, 2013). Technology breaks down boundaries that distance imposes and increases our ability to reach and connect with people. This growth in information and communication technologies over the past decade has produced a wealth of new tools for working with MSM and transgender persons.