The HIVe: Harnessing digital technologies to challenge the dominant HIV and AIDS paradigm

Introduction
Judith D. Auerbach, PhD
Published Online: April 15, 2012
Full Text: HTML, PDF (528 KB)

In the fourth decade of the global AIDS epidemic, the digital universe has solidified itself as a new setting for HIV and AIDS risk, prevention, and community response. This is particualry true among gay and other men who have sex with men and transgenders (G/MSM/TG).  As the papers in this special issue detail, networked and digital technologies are used in multiple ways in the global fight against HIV and AIDS. These include education, the design and conduct of research and prevention programmes, and fomenting community mobilisation.

Networked and digital technologies have been vital to expanding access to information about HIV and AIDS and its attendant health and social issues to anyone with access to and basic competency in using a computer or smart phone.  One can easily find an array of brochures, educational videos, fact sheets, blogs, news feeds, and other resources that provide updates on research and policy developments, and that air controversies in the field—including those that relate to the interpretation of research findings and the conduct of research itself.  The information sharing made possible by the Internet also has produced opportunities for creating new online networks to build communities not bound by geographical proximity.  This has been essential to building advocacy and strengthening civil society responses among G/MSM/TG people and their allies around the world, as evidenced in the work of the Global Forum on MSM and HIV (MSMGF).  Producing new knowledge and buffeting civil society organisations among those most vulnerable to HIV are essential ingredients in combating the pandemic for the long term.

At the same time, the Internet and other social networking and digital technologies have changed interpersonal interactions, including enhancing the ease of opportunities for seeking and selecting partners for sexual encounters. This has particular relevance to HIV transmission and prevention in G/MSM/TG communities.  The vast array of websites and smart phone applications for finding sex partners selected for specific sets of characteristics—body type, HIV-serostatus, age, race/ethnicity/cultural group, gender preferences, geographic proximity, etc.—afford users a level of frequency, agency, and control not previously available.  The relative privacy of online interactions also allows for those who do not wish to publicly acknowledge their sexual preferences (for personal, legal, or safety issues) to meet others with desirable characteristics without “outing” themselves to the broader world.  This then enables individuals to control—to  a great extent—the performance of their gender and sexual identities.

By promoting and facilitating sexual encounters that are often fleeting, based on desire, focused on pleasure, and conducive to individual agency, networking sites run counter to traditional HIV risk reduction approaches.  These emphasise the sublimation of individuals’ desire, pleasure and agency in service to the greater public health goal of disease prevention.   In this way, the growing information-sharing, network-creating, community-building, and sexual encounter-facilitating usages of social media and other digital technologies complicate and challenge mainstream, hegemonic public health and biomedical science-based approaches to HIV prevention.

The HIVe is conceptualised to embrace this challenge for the long-term.  Its mandate is to enhance understanding of the impact of current—and future—networked and digital technologies on HIV transmission. This includes the meanings people imbue to it. The HIVe aims to harness the potential of such technologies for new dynamic models of HIV prevention and care that are relevant to and sustained by G/MSM/TG communities.  The HIVe explores how networking and digital technologies have, and can be used, to build AIDS-resilient communities (Campbell and Cornish 2010) and effective AIDS response coalitions (Grebe 2009) among G/MSM/TG groups. In so doing, the HIVe is poised to flip the traditional, pathology-based frame that has dominated HIV prevention discourse for decades to an assets-based frame.

This contribution is particularly important in the context of two paradigms currently dominating the mainstream AIDS response: “treatment as prevention” and “combination prevention.”

Advances in new HIV prevention techniques using anti-retroviral drugs have shown  that treating HIV-infected individuals earlier in their disease can suppress the virus sufficiently to reduce transmission to partners by as much as 96 percent (Cohen, Chen, McCauley et al., 2011).  This has spawned an almost dogmatic belief among leaders in the global HIV and AIDS response that treatment is prevention.  In this view, the core to stemming the epidemic is to identify everyone with HIV infection through more routinised testing and to get them on drugs as early as possible. This is the so-called “test and treat” or “seek, test, and treat” approach.  Much less is said about what to do with people found to be HIV-negative or people who decline treatment. The belief is that, not only will widespread use of anti-retroviral medication improve the health and well-being of HIV-positive individuals, it also will reduce the amount of virus circulating in a community, known as ‘community viral load’. This thereby reduces the likelihood of new HIV transmissions across a whole population (Das et al., 2010; Johnston et al., 2010).

While some in the HIV and AIDS field are zealous about this singular approach, others advocate a broader, comprehensive strategy that includes biomedical, behavioural and social/structural interventions, community mobilisation, and social change, under the rubric of  “combination prevention”  (Hankins and de Zalduondo 2010; Coates, et al., 2008; Padian, et al., 2011).  In this view, it is necessary to not only develop effective tools, including but not limited to antiretroviral drugs for prevention, but also to assure access to them and to create an enabling environment in which they can be used with maximum effect by both HIV-positive and HIV-negative persons as appropriate  (see Auerbach, et al., 2011).

But, how best to design, implement, and evaluate “test and treat” and  “combination prevention” approaches remains a practical and methodological challenge.  The core issue is how to move from the efficacy of different strategies demonstrated in the rarified context of clinical trials to effectiveness at the population level in “real-world” contexts.   This move requires more than reliance on the somewhat ill-defined fields of “implementation science” and “operations research” which focus on health systems, supply chains and other infrastructure necessary for scaling-up proven interventions.  And it requires more than adding “one from column A and one from column B” of efficacious interventions to create an effective, packaged response that can be tested in clinical trials.  Rather, it requires understanding and addressing the ways in which people—as individuals and members of communities—comprehend and interact with HIV prevention and treatment tools and incorporate them into their everyday lives (or not) in a reflexive way. This is the purview of historically marginalised critical social science  (see, for example Mykhalovskiy and Rosengarten 2009) and collaborative community research of the sort being operationalised by The HIVe.

The HIVe, through its global examples, incorporates an important critique of hegemonic public health science and its valorisation of controlled clinical trials as the gold standard of real “evidence” of what works.  It applies a broad range of “ways of knowing” derived from social and political science and the lived experience of communities. These ways acknowledge the contextual, relational and reflexive nature of individuals’ participation in HIV transmission and prevention, including through their use of networking and digital technologies.   The papers in this volume are co-authored by researchers, activists, and practitioners who understand the central role of communities. Communities are not tokens in, consultants to, or passive recipients of interventions imposed from the outside.  Rather they are social entities and structures that make or break the AIDS response, including the outcomes of clinical trials and the scale-up of promising strategies.  This Special Issue makes it clear that it is only by engaging and building critical capacity among communities—including those created in the digital universe—that we will see the true effectiveness of HIV and AIDS prevention and treatment globally in the decades to come.

References

Auerbach J, Parkhurst J, Cáceres C. 2011.  Addressing social drivers of HIV/AIDS for the long-term response:  Conceptual and methodological considerations.  Global Public Health, 6 (suppl 3), 293-309.

Campbell C and Cornish F.  2010. Editorial: towards a fourth generation of approaches to HIV/AIDS management: creating contexts for effective community mobilisation. AIDS Care, 22 (s.2).

Coates T, Richter L, and Cáceres C. 2008.  Behavioural strategies to reduce HIV transmission: How to make them work better. Lancet, 372 (9639), 669-84.

Cohen M, Chen Y, McCauley M, et al. 2011.  Prevention of HIV-1 infection with early antiretroviral therapy.  New England Journal of Medicine, 365, 493-505.

Das M, Chu P, Santos G, Scheer S, Vittinghoff E, McFarland W, Colfax G. Decreases in community viral load are accompanied by reductions in new HIV infections in San Francisco. PLoS One ,5(6), e11068.

Grebe E. 2009.  The emergence of effective ‘AIDS response coalitions’: A comparison of Uganda and South Africa.  Paper presented at the Mobilizing Social Capital in a World with AIDS Workshop March 2009, Salzburg, Austria.  Available from: http://www.aids2031.org/pdfs/grebe-aids_response_coalitions-feb_2009.pdf

Hankins C and de Zalduondo B.  2010.  Combination prevention: A deeper understanding of effective HIV prevention. AIDS 24, (suppl 4), S70–S80.

Johnston K, Levy A, Limac V, Hogg R, Tyndall M, Gustafson P, Briggs A, and Montaner J.  2010.  Expanding access to HAART: A cost-effective approach for treating and preventing HIV.   AIDS 24, (12), 1929-35.

Mykhalovskiy E and Rosengarten M.  2009.  Commentaries on the nature of social and cultural research: Interviews on HIV/AIDS with Judy Auerbach, Susan Kippax, Steven Epstein, Didier Fassin, Barry Adam, and Dennis Altman. Social Theory & Health 7, 284–304.

Padian N, McCoy S,  Manian S, Wilson D, Schwartlander B, and Bertozzi S.  2011. Evaluation of large-scale combination HIV prevention programs: Essential issues. JAIDS Journal of Acquired Immune Deficiency Syndromes, 51(2), e23-8.

Biographical Statement

Judith Auerbach is a public sociologist currently working as an independent science and policy consultant in San Francisco, California, USA.  She has held high-level positions in a number of organisations, including the San Francisco AIDS Foundation, amfAR (The Foundation for AIDS Research), the Office of AIDS Research at the U.S. National Institutes of Health (NIH), the White House Office of Science and Technology Policy, and the Institute of Medicine. Dr. Auerbach received her Ph.D. in sociology from the University of California, Berkeley, and has taught, presented, and published in the areas of HIV/AIDS, social science and public policy, and sex and gender, with articles appearing in such journals as Global Public Health, American Journal of Public Health, Science, Health Affairs, and the Journal of Health and Social Behavior.  She serves on a number of commissions, editorial, and advisory boards, and has received a number of awards, including the 2008 Career Award from the Sociologists AIDS Network.

Email: judithd.auerbach@gmail.com


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