Two launch events for the proposed collective will take place at the ASSHH conference in Paris being held from the 7th to the 10th of July. We hope that you will join us for one or both of the events to join in the conversation and to offer your voice to this newly forming collective.

1. Sunday the 7th of July: There will be a roundtable event to introduce the networks, to share ideas and discuss emerging themes in our work and to begin to set an agenda for collective and international discussion.
2. Monday the 8th of July: There will be a cocktail party for early career scholars to meet informally, discuss ideas and forge connections. Attendance at the Sunday event is not a prerequisite for participation at the event, which will focus on building networks of support and knowledge sharing more broadly.

Please sign up below to express your interest in joining the network and participating in the Paris events. If you cannot attend the Paris conference, but are still interested in joining the collective, we would still appreciate a response from you to indicate your interest in joining our mailing list and participating in future network events.

The early careers scholars events at ASSHH are being jointly organised by the Interdisciplinary Network on HIV and Innovation (UK), the Network of Young Scholars on Social Sciences and HIV/AIDS (France), and the Transcriptions Forum.

• The Interdisciplinary Network on HIV and Innovation (United Kingdom) was established in 2008 as part of the HIV Project led by Marsha Rosengarten at Goldsmiths College, University of London.  As a collective we encourage interdisciplinarity and collaboration in order to open up debate across disciplines and engage the complex problematic of HIV/AIDS in its various guises using theory such as Science and Technology Studies (STS) and an imaginative approach to novel research methods.
• The Network of Young of Scholars on Social Sciences and HIV/AIDS (France) is an interdisciplinary network of approximately 80 members that was created in 2008 to advocate for collective activities and for the professionalization of young scholars. Its members organise seminars, conferences, thematic workshops and writing/publication workshops. The network is mainly supported by the French National Agency for AIDS research (ANRS) and the Young Scholars Network on Health & Society (Réseau Santé & Société), which also provides support for scientific activities.
• Transcriptions is a collaborative forum for critical enquiry on HIV/AIDS and global health: experiment, ethics, and practice. The site, hosted by Somatosphere, is designed as a space for scholars and activists, policy makers and practitioners working at the intersections of the biosciences, social sciences, public health, and the humanities to engage in critical conversation and to take each other up on important issues that cross disciplinary divides – methodological, conceptual, and programmatic.

Please sign up here to express your interest in joining the network and participating in our Paris events:

Two launch events for the proposed collective will take place at the ASSHH conference in Paris being held from the 7th to the 10th of July. We hope that you will join us for one or both of the events to join in the conversation and to offer your voice to this newly forming collective.

1. Sunday the 7th of July: There will be a roundtable event to introduce the networks, to share ideas and discuss emerging themes in our work and to begin to set an agenda for collective and international discussion.
2. Monday the 8th of July: There will be a cocktail party for early career scholars to meet informally, discuss ideas and forge connections. Attendance at the Sunday event is not a prerequisite for participation at the event, which will focus on building networks of support and knowledge sharing more broadly.

Please sign up below to express your interest in joining the network and participating in the Paris events. If you cannot attend the Paris conference, but are still interested in joining the collective, we would still appreciate a response from you to indicate your interest in joining our mailing list and participating in future network events.

The early careers scholars events at ASSHH are being jointly organised by the Interdisciplinary Network on HIV and Innovation (UK), the Network of Young Scholars on Social Sciences and HIV/AIDS (France), and the Transcriptions Forum.

• The Interdisciplinary Network on HIV and Innovation (United Kingdom) was established in 2008 as part of the HIV Project led by Marsha Rosengarten at Goldsmiths College, University of London.  As a collective we encourage interdisciplinarity and collaboration in order to open up debate across disciplines and engage the complex problematic of HIV/AIDS in its various guises using theory such as Science and Technology Studies (STS) and an imaginative approach to novel research methods.
• The Network of Young of Scholars on Social Sciences and HIV/AIDS (France) is an interdisciplinary network of approximately 80 members that was created in 2008 to advocate for collective activities and for the professionalization of young scholars. Its members organise seminars, conferences, thematic workshops and writing/publication workshops. The network is mainly supported by the French National Agency for AIDS research (ANRS) and the Young Scholars Network on Health & Society (Réseau Santé & Société), which also provides support for scientific activities.
• Transcriptions is a collaborative forum for critical enquiry on HIV/AIDS and global health: experiment, ethics, and practice. The site, hosted by Somatosphere, is designed as a space for scholars and activists, policy makers and practitioners working at the intersections of the biosciences, social sciences, public health, and the humanities to engage in critical conversation and to take each other up on important issues that cross disciplinary divides – methodological, conceptual, and programmatic.

REMINDER: Closing date for abstract submission is on the 01 February 2013, please remember to go online and submit your abstract to meet the deadline.

HOW to SUBMIT
Submissions for abstracts will be available on ASSHH conference website www.asshhconference.org between 1 November 2012 and 1 February 2013.  Contact details of the programme organising committee and conference administration are available at www.asshhconference.org

For the 2nd International Conference, for the Social Sciences and Humanities in HIV we invite papers that address the theme of ‘KNOWING PRACTICES’. This dual concept poses questions about the multiple practices that comprise the dynamics of the epidemic and how the practice of knowing itself, is engaged and operationalised. ‘KNOWING PRACTICES’ refers to:

1. The practices that produce, reproduce and transform the social worlds in which people live. This includes what knowledge we have of the forces shaping the epidemic – whether social, structural, geographic, historical, political or economic – and their connection to practice; and
2. The different ways of ‘doing science’ or knowing (and unknowing), that is, on the ways in which we as scientists claim to have evidence.

We hope this theme will be sufficiently broad and, at the same time, nuanced in reference to the work of the social sciences and humanities to elicit papers on a variety of topics. Within the theme of ‘KNOWING PRACTICES’, we ask what sorts of knowing and un-knowing practices are assembled and enacted as ‘authentic’, ‘valid’, ‘verifiable’? What role is there for the social sciences and humanities in the increasingly biomedical vision of the future by science and its funders? Indeed, in what ways does the promise articulated at AIDS 2012 – that biomedicine will eradicate HIV and end the epidemic – put in place strategies that simultaneously evade the complexity of the everyday nature of living and working with HIV? How can the social sciences and humanities produce knowledge that has an impact on the many forces that shape the epidemic?

While papers that address the conference’s theme ‘KNOWING PRACTICES’ are especially relevant, papers contributing to the advance of rigorous social scientific and humanities approaches to HIV and take other perspectives on the social sciences and humanities are also encouraged.

Conference Papers/ Full Sessions/ Round Table Discussions
We encourage papers/discussions at all levels of analysis and from paradigms and perspectives that address the following:
• The biomedical claims of ‘turning the tide’ to end the epidemic
• Novel knowing practices within science, social science and/or communities
• Relationships among biomedical knowledge, social-scientific knowledge, local knowledge and community know-how
• How social and humanities knowledge, perhaps together with biomedical knowledge, can be used to develop more effective responses to the epidemic
• The performative work of knowing practices (for example in the use of racial, ethnic and gender categories) as they also involve not-knowing (for instance,    not knowing socio-economic difference through gender classification etc.)
• Issues of collaborating with different knowing practices
• The knowledge we have of the different forces shaping the epidemic and how we conceive their connection to practice
• What we know of global disparities in socioeconomic and/or other resources, and how well this knowledge is actioned in responses to the epidemic
• The ways in which notions of ‘the local’ and ‘the global’ inform each other and the implications of this for funding, policy and programming
• If knowledge is not neutral and but generative in ways that enact and affect different interests, how knowing practices give shape to the local and global dynamics
• The ways in which particular agencies or groups bring about changes in social, economic and political forces that shape the epidemic and/or responses to it
• What we know about risk and care practices in different contexts and how we can ensure our methods of knowing are appropriate to local needs

Submission of Abstracts and Session Proposals
Individual abstracts and proposals submitted for full sessions or round table discussions should emphasize how they will make original and timely contributions to any of the themes listed above or how they demonstrate the contribution of the social sciences or humanities to any aspect of the HIV epidemic. Submissions are a maximum of 1500 characters. Spaces count as a character.

Abstracts for individual papers (electronic submission of individual oral papers)
Each abstract (maximum of 1500 characters) should include: title; the main arguments; methodology where appropriate; and contribution to the HIV and AIDS field. The title of the abstract should be followed by the author’s name or (where a collaboration) a list of authors’ names each with their institutional affiliation or status (e.g. independent scholar) and full contact details (postal and electronic). Please list five key words to assist the programme chairs to group individual papers into sessions. All presentations will be allowed 20 minutes, and each session will include time for discussion.

Abstracts for full sessions (email proposal plus electronic submission of individual abstracts)
If you wish to submit a full session, please send an email to programme@asshh.org that includes:

1. Title for session;
2. Brief abstract of the purpose of the session (up to 1500 characters)
3. Name of organiser; and
4. Name, title and abstract of each paper.

Each abstract to be included in a ‘full session’ should be submitted as an individual abstract as above and should be a maximum of 1500 characters. It is necessary for the organiser/s of the ‘full session’ and each presenter in the session to register individually.

Session proposals should be organized around one and-half-hour time slots. A typical session will contain three or four papers of not more than twenty minutes each, with a discussant/respondent and time for open discussion. The programme chairs may assign additional papers to proposed sessions with only three or fewer papers.

Abstracts for round-table discussions: (electronic submission of single abstract)
In addition to the abstract driven sessions, we are keen to hold round-table discussions on current themes being debated across the HIV research and policy fields or emerging through community action. If you are interested in organizing a round-table discussion/forum please submit an abstract of maximum of 1500 characters indicating the topic, names of participants and their likely contribution. If selected, the conference organisers will contact you with a request for further details, including the names of speakers for the forum. Time allowed is a maximum of ninety minutes.

Queries

Programme: programme@asshh.org (relevant queries will be submitted to specific Chair)
Registrations: registrations@asshh.org
Scholarships: scholarships@asshh.org
General: info@asshh.org
Visas: mkapfer@msh-paris.fr

Expansions

Where do things stand with PrEP?
Previous Broadsheets covered the U.S. FDA’s approval of Truvada, the first ARV  prescribed as routine, pre-exposure prophylaxis.  PrEP continues to make news, especially now as an issue of the acceptability of implementation. The Body’s slide show of opinions from the HIV community are largely positive about PrEP as an additional ‘tool in the interventionist toolkit.’  Many of the responders do qualify their support (very carefully, it might be noted) by expressing cautions, such as concerns about associated costs (especially when compared to ARV coverage for those already infected), behavioral implications, and being sure that PrEP does not supplant other strategies. The HIV+ community also expresses mixed opinions; those who are more critical of PrEP do not want the challenges of adherence and drug toxicity to be taken lightly.

Another iteration of next-generation stories are those intending to clarify just how PrEP should be used.  One recent investigation asks about the extent to which PrEP requires perfect compliance (apparently it does not); another published in PLoS and reviewed by AIDS MAP, studies the costs and efficacy of PrEP compared to other intervention strategies, as a tool for middle-income countries like Peru.  Despite significantly reduced infection rates through targeted use, scientists are cautious about its use without 100% treatment coverage for individuals with existing HIV infection.   An overall impression generated by these studies is that while PrEP is an intervention that may have been given legs by the normative drug approval process, one that imagines use decisions as a matter taken up by providers and patients, Truvada’s use cannot be separated from policies that determine larger health service delivery issues, and HIV/AIDS intervention strategies.

The most vocal group that has to-date opposed Truvada is the AIDS Healthcare Foundation (AHF), who continues to wage and also expand their critical campaign.  In recent months, AHF claimed victory when the FDA introduced language that more tightly regulated Truvada’s use.  AHF also focuses its vociferous protests directly onto Truvada’s drug maker, Gilead, and members of the company’s leadership.  Protesting in the streets,  AHF points out the massive profits Gilead will make from the drug.  In a further strategic move, AHF is currently calling upon U.S. state health departments to exclude from Medicaid reimbursement the newly FDA approved four-in-one Gilead HIV drug, Stribild, from formularies until the company lowers costs to peer (Atripla) drug pricing. (In an ironic turn, other circles praised Gilead in October for their philanthropic work in Africa.)

HIV Diagnostics
Another area of expansion receiving attention is diagnostic technology. In July, the FDA approved the Oraquick at-home HIV testing kit, which is now available in stores. Time Magazine named the test one of the best inventions of 2012, and basketball great, Magic Johnson’s formal endorsement received wide coverage (here too and on POZ).  Like PrEP, home-based testing is not only promoted, but user acceptability is also being studied.  Stories list groups’ likelihood of use (AIDS MAP reviews a Spanish study and use by MSM (picked up by KFF) and an e-Health story advocates its uptake in South Africa).

Another point of interest is the recent improvement to rapid testing accuracy and cost.  Insite links to an article from the Chicago Tribune about developments made by Northwestern University scientists, and the Gates Blog cites a new test from Imperial College London (linking to Reuters) that can be used to diagnose HIV and other diseases (AIDS MAP covers too).

HIV and Healthcare Systems

Zimbabwe announced a step-down of HIV initiation from doctors to nurses, reported and reviewed by Plus News. The story was picked up by KFF, and e-Health considers using this arrangement in South Africa.

Indonesia’s prospective universal healthcare coverage will include HIV treatment, featured in a gushing UNAIDS story, summarized by KFF, and reposted on Insite.

AIDS MAP and others posted that the UK’s health service delivery will now make ARVs accessible for all individuals regardless of immigration status.

Justice: Law and Protest

A prominent event of the last weeks is Canada’s Supreme Court ruling, clarifying what counts as criminal when failing to disclose one’s positive HIV status to a sexual partner.  AIDS MAP has written original content summarizing the ruling, which refined the risk of transmission criteria (based on viral load and use of condoms) to determine whether individuals are legally bound to disclose their status.  Divided POZ readers comment here. Canadian HIV/AIDS legal advocates have been highly critical of the ruling, linked to from AIDS MAP.  The ruling was tested in early November when Steven Boone was tried and convicted of attempted murder and aggravated assault on multiple counts, including for having unprotected sex without disclosing his positive HIV status. This ruling has also been heavily criticized by HIV/AIDS activists, who argue that a penalizing environment will foment fear and stigma.

Patents are another hot issue at the moment.  Slowly making its way around the blogosphere is the “quiet shift” (description overwhelmingly applied) in Indonesia’s stance on pharmaceutical patent law. Signed by presidential decree in September, President Susilo Bambang Yudhoyono is allowing the government to license HIV drug patents, taking the production of medications out of the control of prominent pharmaceutical companies. The move is intended to promote generic competition and ultimately lower drug prices.  The Body, Insite, KFF, and AIDS MAP linked to the news, citing this Reuter’s article. POZ reported on the story as well, citing the Centers for Disease Control.  The U.S.-based NGO, Public Citizen, has been a vocal proponent of the event, and linked to from other websites.  Patents also feature in a Plus News story (picked up by Insite and KFF) that points out the consequences of South Africa’s relaxed patent office, which increases costs by allowing for renewals of intellectual property restrictions on old drugs.

As for protests, KFF reports that Zimbabweans are protesting corruption-related improper use of the national tax levied for HIV/AIDS programming.  Recall that just a few months ago, UNAIDS celebrated the domestic tax as emblematic of countries taking ‘ownership’ of their HIV funding, and in February 2012, Plus News ran a story that also highlighted the benefits of these resources for HIV/AIDS programming. No follow-up comment can yet be found on either of these sites.

Counting Exercises: Targets and Funding

The Global Fund continues to receive significant coverage, its funding profoundly shaping HIV/AIDS care and treatment worldwide.  After coming to a halt last year, the reinstatement of the Fund in 2012 invigorated “a management focus on impact” (taken up in the last Broadsheet).  As a result, there is close monitoring of countries’ uses of Global Fund resources and their ability to achieve outcome objectives. In the last six weeks, an audit of Namibia’s use of funds was released, which found positive outcomes as well as $2.23 million that went unaccounted for and which the Fund seeks to recover.  The audit was picked up by All Africa, reporting that Namibia was  ‘whipped’ by the Global Fund, language that does not correspond to the audit’s descriptions, which are largely congratulatory. Moreover, the audit comes on the heels of Hillary Clinton praising Namibia for its progress with HIV/AIDS. These disconnects raise questions as to the way donor decision-making is formulated and commented upon by the variety of constituencies who engage in discourse-making.

Myanmar, whose funds were previously cut, is now being publicly encouraged by the Fund to re-apply (posted on KFF from IRIN, and the Global Fund).

Ethiopia’s funding was recently cut by PEPFAR and its Global Fund resources have been undisbursed, reported by KFF based on this concerned posting from the Global Health Policy blog.

Synergies

In the area of lateral moves between HIV/AIDS and other diseases and health-related concerns, Plus News reports limited cervical cancer screening in Kenya, based on a recently published WHO report. Links between HIV and other determining insecurities, such as food scarcity, continue to be studied and documented, picked up by KFF.

Biomedical Topics: Vaccines

Vaccine prospects are taking center stage at the moment, spawned by recent journal publications, and vaccine conferences in Seattle and Boston. Receiving the most attention is the CAPRISA project in South Africa, which published in Nature Medicine what is considered to be a major discovery about the way immune systems can neutralize HIV.  The article has been widely cited, including by  Plus News ,the WSJ, the NYT, POZ, linking to a press release from the University of Witswatersrand (home of a lead researcher) and e-Health also featured a story about it.  Columbia University, another institutional base, also posted material.

Another study called RV144 has also shown promising immune system findings, picked up by KFF (see Bloomberg on vaccine possibilities). The Seattle conference, organized by the Gates Foundation, presented these and related findings.

Immune science research will be given a boost by AHF’s establishment of the Institute for Immunotherapeutic Research, to be headed by a clinician and researcher Otto Yang of UCLA.  The press release states that turning to immune-based sciences is the result of “the few remaining strides” with ARVs; now, big breakthrough will come about through gene therapy and vaccine research. A Canadian vaccine research bioventure has also made news from similar study objectives.

Conversations and Frictions

Online discussions have recently coalesced on the blog, ‘Science Speaks’, aiming to gather commentary from HIV/AIDS advocates about the State Department’s HIV/AIDS ‘Blueprint’ announcement by Hillary Clinton at the 2012 AIDS Conference.  The Global Fund and Hufffington Post have also teamed up and launched the “The Big Push,” aimed to keep attention on the Global Fund’s financing imperatives despite the economic downtown.  POZ has connected to the latter campaign.

Over the past six months of writing this Broadsheet, I have noticed that particular stories clearly grow legs; they gain traction by circulating, then posted online, and then reposted.  However, despite their circulation, they seem to attract very little substantive commentary.  Aside from a few areas of more overt commentary (AHF’s takedown of Gilead, protests to End AIDS at the AIDS Conference, comments made by POZ and The Body readership), AIDS activism of the past feels far from the current constellation of concerns, articulated through on-line media.

That said, two letters were recently released on-line that may expose some of the tensions simmering just below the surface of global donor programming.  One critical letter (featured on KFF) was penned by members of twelve prominent health organizations to Global AIDS Coordinator, Eric Goosby, pointing out the blindspot of PEPFAR in adequately addressing HIV/AIDS among vulnerable populations (men who have sex with men, people who inject drugs, sex workers, and transgendered persons).  They urge taking committed action in line with Hillary Clinton’s AIDS Conference remarks to address the HIV needs of ‘highest risk groups.’  The letter belies disappointments with marginalizing policies within and outside of the HIV/AIDS arena (e.g., the criminalized treatment of sex workers), and seeks changes in future funding structures.  Another recently posted letter, this time on the AHF website, was written by advocates critiquing the Global Fund’s policy and management decisions, which may be so technocratic that it undermines its country-based effectiveness.  AHF shared the letter in a press release stating that the Fund’s General Manager welcomed the input, though neither the letter, nor the open reactions, can be found on the Global Fund website to date.

Searching for differing opinions or sites of potential conflict is an emerging objective in the Broadsheet.  What is at stake, and for whom, in this on-line circulating media world?  One immediate issue to watch is that of global malaria funding.  As reported by KFF, Plus News and others, the Global Fund and other programmatic support may have inadvertently led to a rise in inappropriate treatment. This, coupled with recent failures in malaria vaccine trials and news of wide swaths of the world experiencing drug resistance, frames what might become an uncomfortable but pressing conversation about the consequences (intended and unintended) of funding. This is a tricky conversation to have in a climate of economic austerity, where funders might want nothing more than to justify pulling back their resources. How such positions interact and become entangled will be one of many issues to watch unfold in the coming weeks.

Broadsheet News Tracking Method: After a preliminary Google Alerts search using “HIV/AIDS” and “global health” as key terms, I look up stories that appear to be getting on-line attention, especially focusing on 12 organization websites: UNAIDS, IRIN Plus News (Plus News), Kaiser Family Foundation (KFF), University of California San Francisco HIV Insite (Insite), NAM AIDS MAP (AIDS MAP), Health-e, The Body, POZ, Global Fund, International HIV/AIDS Alliance (Alliance), Bill and Melinda Gates Foundation (Gates’ blog); and AIDS Healthcare Foundation (AHF). I then look over additional news covered on these websites, tracking sources used.

For the 2nd International Conference for the Social Sciences and Humanities in HIV we invite papers that address the theme of ‘KNOWING PRACTICES’. This dual concept poses questions about the multiple practices that comprise the dynamics of the epidemic and how the practice of knowing itself, is engaged and operationalised. ‘KNOWING PRACTICES’ refers to:

1. The practices that produce, reproduce and transform the social worlds in which people live. This includes what knowledge we have of the forces shaping the epidemic – whether social, structural, geographic, historical, political or economic – and their connection to practice; and
2. The different ways of ‘doing science’ or knowing (and unknowing), that is, on the ways in which we as scientists claim to have evidence.

We hope this theme will be sufficiently broad and, at the same time, nuanced in reference to the work of the social sciences and humanities to elicit papers on a variety of topics. Within the theme of ‘KNOWING PRACTICES’, we ask what sorts of knowing and un-knowing practices are assembled and enacted as ‘authentic’, ‘valid’, ‘verifiable’? What role is there for the social sciences and humanities in the increasingly biomedical vision of the future by science and its funders? Indeed, in what ways does the promise articulated at AIDS 2012 – that biomedicine will eradicate HIV and end the epidemic – put in place strategies that simultaneously evade the complexity of the everyday nature of living and working with HIV? How can the social sciences and humanities produce knowledge that has an impact on the many forces that shape the epidemic?

While papers that address the conference’s theme ‘KNOWING PRACTICES’ are especially relevant, papers contributing to the advance of rigorous social scientific and humanities approaches to HIV and take other perspectives on the social sciences and humanities are also encouraged.

Conference Papers/ Full Sessions/ Round Table Discussions
We encourage papers/discussions at all levels of analysis and from paradigms and perspectives that address the following:

• The biomedical claims of ‘turning the tide’ to end the epidemic
• Novel knowing practices within science, social science and/or communities
• Relationships among biomedical knowledge, social-scientific knowledge, local knowledge and community know-how
• How social and humanities knowledge, perhaps together with biomedical knowledge, can be used to develop more effective responses to the epidemic
• The performative work of knowing practices (for example in the use of racial, ethnic and gender categories) as they also involve not-knowing (for instance, not knowing socio-economic difference through gender classification etc.)
• Issues of collaborating with different knowing practices
• The knowledge we have of the different forces shaping the epidemic and how we conceive their connection to practice
• What we know of global disparities in socioeconomic and/or other resources, and how well this knowledge is actioned in responses to the epidemic
• The ways in which notions of ‘the local’ and ‘the global’ inform each other and the implications of this for funding, policy and programming
• If knowledge is not neutral and but generative in ways that enact and affect different interests, how knowing practices give shape to the local and global dynamics
• The ways in which particular agencies or groups bring about changes in social, economic and political forces that shape the epidemic and/or responses to it
• What we know about risk and care practices in different contexts and how we can ensure our methods of knowing are appropriate to local needs

Submission of Abstracts and Session Proposals
Individual abstracts and proposals submitted for full sessions or round table discussions should emphasize how they will make original and timely contributions to any of the themes listed above or how they demonstrate the contribution of the social sciences or humanities to any aspect of the HIV epidemic. Submissions are a maximum of 1500 characters. Spaces count as a character.

Abstracts for individual papers (electronic submission of individual oral papers)
Each abstract (maximum of 1500 characters) should include: title; the main arguments; methodology where appropriate; and contribution to the HIV and AIDS field. The title of the abstract should be followed by the author’s name or (where a collaboration) a list of authors’ names each with their institutional affiliation or status (e.g. independent scholar) and full contact details (postal and electronic). Please list five key words to assist the programme chairs to group individual papers into sessions. All presentations will be allowed 20 minutes, and each session will include time for discussion.

Abstracts for full sessions (email proposal plus electronic submission of individual abstracts)
If you wish to submit a full session, please send an email to programme@asshh.org that includes:

1. Title for session;
2. Brief abstract of the purpose of the session (up to 1500 characters)
3. Name of organiser; and
4. Name, title and abstract of each paper.

Each abstract to be included in a ‘full session’ should be submitted as an individual abstract as above and should be a maximum of 1500 characters. It is necessary for the organiser/s of the ‘full session’ and each presenter in the session to register individually.

Session proposals should be organized around one and-half-hour time slots. A typical session will contain three or four papers of not more than twenty minutes each, with a discussant/respondent and time for open discussion. The programme chairs may assign additional papers to proposed sessions with only three or fewer papers.

Abstracts for round-table discussions: (electronic submission of single abstract)
In addition to the abstract driven sessions, we are keen to hold round-table discussions on current themes being debated across the HIV research and policy fields or emerging through community action. If you are interested in organizing a round-table discussion/forum please submit an abstract of maximum of 1500 characters indicating the topic, names of participants and their likely contribution. If selected, the conference organisers will contact you with a request for further details, including the names of speakers for the forum. Time allowed is a maximum of ninety minutes.

HOW to SUBMIT
Submission for abstracts will be available on ASSHH conference website www.asshhconference.org between 1 November 2012 and 1 February 2013. Contact details of the programme organising committee and conference administration are available at www.asshhconference.org

Queries
Programme: programme@asshh.org (relevant queries will be submitted to specific Chair)
Registrations: registrations@asshh.org
Scholarships: scholarships@asshh.org
General: info@asshh.org
Visas: mkapfer@msh-paris.fr

As a result, HPTN 052 has brought a revival of hope for slowing rates of HIV infection (We CAN end the AIDS epidemic, June 2011). Although scientists have welcomed the data as opening the possibility of a significant shift in the global AIDS response, others have raised fears that that using antiretroviral medications to prevent HIV transmission, referred to as ‘treatment as prevention’ (TasP) may encourage the remedicalisation of HIV prevention. As Vinh-Kim Nguyen et al. (2010) defined it, remedicalisation is a paradigm shift in the battle against HIV and AIDS that signals a return to the early 1980s view of the epidemic as ‘a medical problem best addressed by purely technical, biomedical solutions whose management should be left to biomedical professionals and scientists’ (Nguyen et al. 2010:1).

Indeed, in light of new findings, the global response to the epidemic has been increasingly concerned with biomedical, structural and behavioural interventions aimed at scaling up HIV testing, clinical and laboratory monitoring and support of patient adherence. According to Nguyen et al., the growing emphasis on TasP is occurring at the expense of non-medical prevention efforts such as safe sex education or harm reduction strategies. It also risks ignoring a broader discussion inclusive of local epidemiological and socio-historical contexts. Critics argue that debates emerging under TasP do not account for community orientated and context-sensitive prevention, which has often originated from high-risk populations. These include the practice of ‘negotiated safety’, which offers a possibility of risk avoidance other than using condoms in regular relationships as long as safe sex agreements are negotiated to cover sexual behaviour outside those regular relationships (Kippax and Race 2003: 3-4).

Although populations targeted by prevention strategies appear to actively change those strategies, the framework of remedicalised prevention draws attention away from that fact. As a part of the audience of the “Controlling the HIV Epidemic with Antiretrovirals” Summit, I observed how social actors appear in the discussion mostly in the context of patients’ adherence to ART regimes. Yet I believe that the question of ‘how to make them take pills’ could be replaced with a much more imaginative debate on how investing in new ways of using antiretroviral drugs may alter an already rich environment in which HIV positive people live and access health care. As experience of living with HIV differs accordingly to geographical location (see for example, Rosengarten & Michael, 2009a; 2009b; Davis & Squire, 2010), we could ask if ART may produce different outcomes in various contexts. It is the role of social scientists to carefully attend to its conditions and potential trajectories.

Currently, more than 70 percent of people living with HIV lack full access to treatment (Rosengarten 2009: 3). Places where ART is available experience difficulties that challenge and/or alter the course of the disease and its treatment. These include HIV-related stigma, medication side effects that may increase uptake of alternative therapies, and heterogeneous ways in which people form relationships with their sexual partners and within their communities (see for example Race 2001, Rosengarten 2009, Tiruneh 2011). I argue here that understanding what informs patients’ thinking around treatment requires us to engage with such complexities as well as with biomedical advances and their implications.

Pharmaceutical interventions have already been recognised as having profound ethical and social consequences. Studies have shown how they generate a new kind of a patient who can, and is expected to take responsibility for his or her well-being (Rosengarten et al. 2004). Indeed, the possibility of monitoring viral loads through blood tests allowed providers to ‘see’ a patient’s adherence and discipline them accordingly. It also created the possibility for patients to adopt inventive and diverse styles of risk reduction. Research in Australia demonstrated how gay men spoke of being either the insertive or receptive partner in unprotected anal intercourse depending upon their HIV antibody status. Respondents also described how low or undetectable viral loads lowered risk of infection (Rosengarten, Race, & Kippax 2000).

In HIV prevention the social and the biological are co-constitutive. Kane Race (2003) proposed that forming a response to HIV risk is a reflexive mediation between embodied practices and medical knowledge. Race shows how historical, diverse gay communities incorporate medical knowledges, prevention tools and varied ideas about the risk of HIV transmission in a way which sustains gay culture and recasts gay men’s agency as creatively achieved. His argument revises the presumption of the target of prevention as a passive individual measured against behavioural models of adherence.

Neither biomedical advances nor the HIV-positive individuals that they act upon can be assumed to be passive or invariable. Acknowledging their agency opens up novel possibilities of approaching issues such as the ethics of TasP. According to medical ethics, one of the fundamental requirements that must be met by healthcare providers is that of patient autonomy. This implies that every patient has a fundamental right to autonomy in making informed decisions about their treatment, free from coercion. Such a position assumes that:

• doctors possess a complete knowledge about the virus as well as the drugs and their influence on the human organism
• such knowledge can be communicated to the patient in a straightforward way
• patients are able to make decisions independently of their healthcare providers and the people they are surrounded with.

Though I am far from suggesting that physicians are violating patients’ rights in how they provide advice and prescribe medication, I argue that the principle of patient autonomy is often incommensurable with the conditions under which HIV care can be provided. Firstly, the knowledge of TasP and its effects on patients’ health is still widely debated. Yet, in New York and San Francisco anybody diagnosed with HIV is offered ART regardless of their CD4 count (Krellenstein and Strub 2012). Critics assert that doctors pursue the implementation of TasP by describing the individual benefits of an early start to ART, even though the research on the benefits and risks of initiating the treatment before clinically indicated is far from conclusive (Krellenstein and Strub 2012). It is important to acknowledge that TasP policies are entering clinics that have a long history of discouraging an early start of therapies due to pharmaceuticals’ toxicity and their side effects. Instead of witnessing a straightforward application of TasP policies, clinical spaces may become arenas where new ideas are negotiated alongside, and often in contradiction to, old beliefs about ART.

Also, conversely to the principles of patient autonomy, the translation of knowledge during doctor-patient consultation is unlikely to be straightforward as patients often offer their own interpretations of medical recommendations (e.g. Coyle 2008, Gil et al. 2010). In some local contexts, for example, patients with full access to antiretroviral drugs may consider TasP a liberating tool that enables them to protect sexual partners. On the other hand, some individuals may lack confidence to discuss an early initiation of ART with their physicians and some may be discouraged by side-effects or difficulties in sustaining adherence regimes which add to the burden of illness. TasP may also introduce discussion about trust in a relationship and partners’ responsibilities for each other’s health.

Finally, it must be acknowledged that patients make decisions that incorporate the opinions of doctors they trust, fellow patients, or partners who they love (e.g. Kippax and Race 2003, Kippax 2010). A study of serodiscordant heterosexual couples in Kenya who were offered a choice of antiretroviral prevention methods found that not all participants were willing to use early treatment for prevention. Instead, a majority of HIV-negative participants expressed their readiness to share the responsibility for preventing HIV transmission through taking a daily dosage of antiretroviral drugs to reduce their risk of becoming infected (PrEP) (Heffron et al. 2012). This may indicate that sexual partners of people living with HIV are active actors in the decision making process.

The complexity of TasP cannot be assumed and should not be underestimated. Investigation into TasP, however, can only be done if efforts that present ARVs as a straightforward means of prevention are abandoned in favour of a richer debate on the potential trajectories of biomedicalised prevention. Both social and biomedical sciences have to recognise the creative potential of ART for creating new dynamics in clinic spaces as well as within the relationships people form outside it. The history of the epidemic shows how communities develop their response to HIV risk through incorporating medical knowledges, prevention tools and varied ideas about the risk of HIV transmission. In future, we might expect that consequences of biomedical interventions will also introduce varied phenomena, e.g. new ways of seeking trust and pleasure within relationships and new forms of safe sex negotiation.

References

1. Coyle, J., (2008), Exploring the Meaning of “Dissatisfaction” with Health Care: The Importance of “Personal Identity Threat”, Sociology of Health & Illness, 21: 95–123

2. Davis, M., Squire, C., (2010), HIV technologies, in: HIV Treatment and Prevention Technologies in International Perspective, Palgrave Macmillan, Basingtoke.

3. Gill, V.T., Pomerantz, A., Denvir, P., (2010), Pre-emptive resistance: patients’ participation in diagnostic sense-making activities, Sociology of Health & Illness, 32: 1–20.

4. Heffron, R., Ngure, K., Mugo, N., Celum, C., Kurth, A., Curran, K., Baeten, J.M., (2012), Willingness of Kenyan HIV-1 Serodiscordant Couples to Use Antiretroviral-Based HIV-1 Prevention Strategies, AIDS, 61(1):116-9.
5. Kippax, S., (2010), Reasserting the Social in a Biomedical Epidemic: The Case of HIV-Prevention, Presented at the Reframing the social dimensions of HIV in a biomedicalised epidemic: The case of treatment as prevention, London.
6. Kippax, S., Race, K., (2003), Sustaining safe practice: twenty years on, Social Science & Medicine, 57 (1): 1-12.
7. Krellenstein, J.B., Strub, S., (2012), The ethical implications of “treatment as prevention” in The United States, HIV/AIDS Policy and Law, 16: 11-14.
8. Nguyen, V., Bajos, N., Dubois-Arber, F., O’Malley, J., Pirkle, C. M., (2010), Remedicalizing an epidemic: from HIV treatment as prevention to HIV treatment is prevention, AIDS, 25(3):291-3.
9. Race, K., (2001), The Undetectable Crisis: Changing Technologies of Risk, Sexualities, 4: 167–189.
10. Race, K., (2003), Revaluation of risk among gay men, AIDS Education and Prevention, 15 (4): 369-81.
11. Rosengarten, M., (2009), HIV interventions biomedicine and the traffic between information and flesh, University of Washington Press, Seattle.
12. Rosengarten, M., Imrie, J., Flowers, P., Davis, M. D., Hart, G., (2004), After the euphoria: HIV medical technologies from the perspective of their prescribers, Sociology of Health and Illness, 26 (5): 575-96.
13. Rosengarten, M., Michael, M., (2009a), Rethinking the Bioethical Enactment of Medically Drugged Bodies: Paradoxes of Using Anti-HIV Drug Therapy as a Technology for Prevention, Science as Culture, 18: 183–199.
14. Rosengarten, M., Michael, M., (2009b), The performative function of expectations in translating treatment to prevention: The case of HIV pre-exposure prophylaxis, or PrEP, Social Science & Medicine,69:1049–1055.
15. Rosengarten, M., Race, K., Kippax, S., (2000), “Touch Wood, Everything Will Be Ok”: Gay Men’s Understandings Of Clinical Markers In Sexual Practise, Monograph, Sydney: National Centre In HIV Social.
16. Tiruneh, Y., 2011. Complementary and Alternative Medicine Use in the Era of Treatment Led HIV Management, Presented at the Locating the Social: 1st International HIV Social Science and Humanities Conference, Durban, South Africa.
17. We CAN end the AIDS epidemic, 2011,   < http://www.avac.org/ht/d/sp/i/34301/pid/3430.1>

Samuel R. Friedman, National Development and Research Institutes, Inc., New York, NY USA

Tetyana Vasylyeva, MS Degree student in Epidemiology at the School of Public Health, SUNY-Albany, NY USA

Pavlo Smyrnov, International HIV/AIDS Alliance in Ukraine, Kyiv, Ukraine

I (Sam Friedman) recently received a US National Institute on Drug Abuse Avant-Garde Award to develop, conduct and study a new HIV prevention project. The proposal was based in part on what was done in the allied “Project Protect” project in Ukraine. The new project will focus on two situations where HIV incidence has remained high for many years (IDUs and sex workers in a Ukrainian city, probably Odessa; and African American MSM in Chicago, Illinois) and on one recent HIV outbreak (focused among IDUs in Athens, Greece—which may have been sparked by the ongoing economic difficulties, cutbacks, and political turbulence in Greece in recent years, which we look at as a “big Event” (Friedman et al. 2009).  The new research project aims to zero in on people with recent HIV infection and then recruit people into the project who are in their risk networks and social networks, or who find sex or injection partners at the same locations as participants with recent infection. When we find someone with acute or recent infection in the networks or venues, we will follow their networks and venues as well. All of these people are strategically important because some studies have found that half of new infections are transmitted by people within a year of their becoming infected.  We aim to prevent such transmission insofar as we can while referring them to needed medical and other assistance.

Once we find people with recent infection, whether through the project itself or by referral from medical services or local NGOs, we will interact with them in several ways. In addition to eliciting information and assistance in tracing their networks and venues, we will give them appropriate counseling and then put them in touch with treatment services for HIV, alcohol or drug problems, and other services that may benefit them and perhaps reduce the probability that they will transmit HIV to others. We will also put out “community alerts” to their immediate social networks and venues that tell people that someone in their immediate social neighborhood has recently been infected with HIV and is thus highly infectious. We will urge them to be super-cautious for the next 6 months and provide them with condoms, syringes and other materials. This should help them avoid becoming infected, and in addition may mean that others in the infection chain who have acute or recent infection may also take precautions even if they do not know they are infected.

For this to work, we will educate at-risk communities in the cities where we will be operating about the natural history of early HIV infection. We will emphasize the fact that high infectivity lasts for only a few months and thus that they should support each other during community alerts rather than stigmatizing people they think might have recently become infected. In doing this, we want to avoid panic and perhaps stigmatization or violence directed at people whom others come to think of as “super-infectors.” In the pilot project in Ukraine, we did not encounter such problems. This favorable outcome may have been because of the community-embeddedness of our Ukrainian team and because of their sensitivity to the concerns and fears of participants. If we proceed in the new project, we will take pains to assure community embeddedness and to forestall and (if we fail) to understand, research, and avoid repetitions of any untoward events.

The funding of this project shows a willingness on the part of NIDA and perhaps a growing willingness on the part of other agencies to support projects that synthesize the social with the biomedical.  The social aspects of this project include both social network theory and methods and also community intervention theory and methods. Biomedical methods will be used to detect whether potential participants have acute or recent HIV infection. Epidemiologic theory comes in through the concept of infection chains, which are the pathways through networks through which the infection actually traveled. Deep sequencing of the virus with which they are infected will let us conduct phylodynamic analyses to determine these infection chains. Phylodynamic techniques will also be used to help us determine whether the intervention is reducing transmission.

Unlike many other HIV prevention and treatment methods, this technique will follow the virus to where it is likely to be transmitted. Since we will follow infection chains as they pass through bridge groups, our intervention will not be restricted to any one “key population” such as MSM, PWID, or sex workers, but will find people who have recently been infected regardless of such sociobehavioral categories. This is important. From Friedman’s work and that of many other network researchers over the last two decades or more, it has become apparent that “identity categories” like gay man or person who injects drugs are only loosely aligned with whom people have sex with or with whom they use drugs. This first became glaringly obvious in the high infection rates of women who both have sex with other women and who inject drugs (Jose et al, 1993; Friedman et al 1995, 1997), but is also quite evident in a variety of community network and group sex studies such as those described in Friedman et al (1997, 2007, 2008, 2011). Thus, although there are good reasons why some kinds of prevention programs might focus in on Key Populations or identities, programs that directly target HIV transmission should consider a broader focus.

The editorial group that oversees this blog asked us to speculate about why a transdisciplinary project of this kind interested NIDA funders and indeed led them to see it as having the potential to transform the field whereas other projects with a major social component might not get funded. We think that one important reason is the clarity of the goals of this project and the ways in which it meshes with central goals of NIH.  This project aims to reduce HIV transmission and to get people into HIV treatment soon after infection through a well-integrated set of social and clinical interventions. Its underlying methods and theory rest firmly on those of socially-informed epidemiology, clinical science, and community intervention methods that NIDA has helped to develop. It thus integrates the social with epidemiology and clinical science in pursuit of clearly practical outcomes. In this, it might perhaps appear to many reviewers as quite distinct from research proposals whose main outcomes are or appear to be the advancement of social science theory. In addition, it might appear to reviewers to be “grounded in material reality” rather than in concepts of social emergence, identities or interaction that reviewers may not understand. However, we want to emphasize that this paragraph is very speculative. We also want to be clear that we do not subscribe to these critiques that we are speculating the reviewers might have.

There is another way to frame this that may be useful for the field. The emergence of “Treatment as Prevention” as a primary HIV intervention strategy may seem on its face to be a thoroughgoing biomedicalization of the field. This interpretation is premature, however, because Treatment as Prevention has three major Achilles Heels that all show the vital necessity of social analysis and of socially-based transdisciplinary prevention. The first Achilles Heel, and that which is the focus of our new project, is the inability of biomedical institutions to recruit enough people in their acute and recent infection periods to prevent a large proportion of transmissions. (We hope to solve that problem, based on years of social network and community intervention research). A second Achilles Heel is one we are just realizing the importance of for our study (and for effective prevention and care): This is that many medical institutions are hostile environments for many people likely to have recently become infected (ongoing drug users, sex workers, high-risk MSM, poor people), at least in some countries. Social research can contribute to analyses that may help make these environments less hostile and that also may make it easier for the recently-infected to go to medical and other institutions and to adhere to medically-important regimens.  The third Achilles Heel, economic sustainability, is clearly critical to prevent what we hereby name “Rebound Epidemics,” and likewise can benefit from social research and action (although these are not the focus of the project being discussed here.)

We hope that this project will encourage others to develop transdisciplinary integrated approaches to preventing transmission or to improving medical outcomes for people with HIV.

Acknowledgments

We would like to thank Konstantin Dumchev of CDC-Ukraine for his assistance. We gratefully acknowledge support from National Institute on Drug Abuse grants P30 DA11041 (Center for Drug Use and HIV Research); DP1 DA034989 (Preventing HIV Transmission by Recently-Infected Drug Users); and National Institutes of Health D43TW000233 funded by the Fogarty International Center. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

References

Jose B, Friedman SR, Neaigus A, Curtis R, Grund JPC, Goldstein MF, Ward TP, Des Jarlais DC. Syringe-mediated drug-sharing (Backloading):  A new risk factor for HIV among injecting drug-users. AIDS, 7(1993)12:1653-60.

Friedman, S.R., Jose, B., Deren, S., Des Jarlais, D.C., Neaigus, A. & National AIDS Research Consortium.  Risk Factors for HIV Seroconversion among Out-of-Treatment Drug Injectors in High and Low Seroprevalence Cities.  American Journal of Epidemiology, 142 (1995)8:864-874.

Friedman SR, Neaigus A, Jose B, Curtis R, Goldstein M, Ildefonso G, Rothenberg RB, Des Jarlais DC.  Sociometric Risk Networks and HIV Risk.  American Journal of Public Health 87(1997);8:1289-1296.

Friedman SR, Bolyard M, Mateu-Gelabert P, Goltzman P, Pawlowicz MP, Zunino Singh D, Touze G, Rossi D, Maslow C, Sandoval M, Flom PL. (2007). Some data-driven reflections on priorities in AIDS network research. AIDS and Behavior, 11 (5), 641-651.

Friedman, Samuel R; Bolyard, Melissa; Khan, Maria; Maslow, Carey; Sandoval, Milagros; Mateu-Gelabert, Pedro; Krauss, Beatrice; Aral, Sevgi O. (2008). Group Sex Events and HIV/STI Risk in an Urban Network. J Acq Immun Syn.49(4):440-446.

Friedman, Samuel R; Rossi, Diana; Braine, Naomi. (2009). Theorizing “Big Events” as a potential risk environment for drug use, drug-related harm and HIV epidemic outbreaks. International Journal on Drug Policy 20:283-291.

Friedman, Samuel R; Mateu-Gelabert, Pedro; Sandoval, Milagros. Group-sex events amongst non-gay drug users: An understudied risk environment. International Journal of Drug Policy DOI: 10.1016/j.drugpo.2010.06.004. Volume 22, Issue 1, Pages 1-8 (January 2011). PMC3019255

Registration for this Health Workshop is now open and free. To register, please send an abstract of your current or proposed project along with your contact information to: ASAhealthworkshop2012@gmail.com. We will provide workshop participants with compiled abstracts and contact information of all participants to facilitate networking and collaboration.

The format for the workshop is a panel of interdisciplinary researchers from the humanities, social sciences, public health and medicine who will present information about health-related interventions in African settings from around the continent. After the panel session we will break up into small groups to discuss emergent topics related to particular types of health interventions and plan for the health workshop in Baltimore in 2013 where we can interact more easily with representatives from various branches of the NIH. Young scholars are encouraged to participate.  Unfortunately, food and drinks will not be provided at the workshop. We ask all participants to come to the workshop with their lunches.

The Lolo Jones issue and the female guest’s response, speak to two issues that I, as an HIV researcher and prevention practitioner, have been intrigued by for some time now. These are our limited understanding of the experiences of young people who choose to, and successfully, abstain from sex and the lack of HIV prevention interventions for sexually abstinent youth.  Unfortunately, the concept of abstinence has become so politically incorrect and emotionally charged in the HIV world that there is great reluctance to acknowledge that every single day around the world young people are successfully delaying sexual debut—if not until they are  married, for one more month or for one more year, and so on. However, these choices seem not to count for much in the dominant HIV prevention landscape with HIV researchers and practitioners often too quick to argue that “abstinence does not work”. This phrase typically means one of two things: abstinence is impossible, that is, we all succumb to our sexual urges before we marry; and abstinence-only messages are inadequate as an HIV prevention strategy. In this article, I argue that an HIV prevention response that is based on the belief that “abstinence does not work” is just as problematic as one that is based on abstinence-only messages.

Many years back I was involved in designing and implementing an HIV prevention program for university students in Zimbabwe.  We faced major challenges attracting Christian students to our activities and I vividly recall numerous occasions when Christian students would ask us “So, are you saying we should use condoms?”.  I often replied in the affirmative and would then try to “show” these students the “folly” of remaining uninformed on correct condom use. I also recall literally forcing female students attending our workshops to touch and feel and even smell the male and female condoms that we brought along to these trainings.  I was always exasperated by their unwillingness to touch a condom, which they seemed to associate with impurity and contagion. To further drive my sense of outrage home, I would usually close a session on correct condom use by moisturizing my lips with the lubrication from the condom.

In the intervening years since, in which I have primarily donned the hat of an HIV researcher rather than that of an HIV prevention educator/activist, I feel that I have a better grasp of Christian students’ concerns. I have learned that, for many Christian youth, pre-marital abstinence is not simply something that one does, but is what one is. Abstinence is not an action one performs or a “behavior”, but is an integral part of one’s identity as a Christian. A critical first step towards developing an appropriate HIV prevention response for sexually-abstinent youth, for me, therefore, is one that takes into account the fact that pre-marital sexual abstinence is, for some young people, deeply embedded into their sense of self. Such an approach would lead us down a substantially different path than an approach which views abstinence strictly as a behavior because the focus would not be on changing the behavior but on understanding what the behavior means or signifies for the individuals practicing it.

Scholars have noted that the term “identity” refers to that which an individual uniquely possesses (i.e. it is who one is or who one thinks they are) and that it also signifies and is embedded in broader social relationships. Identities therefore have both individual and social aspects. In this vein, therefore, the ideology of pre-marital sexual abstinence must be seen as providing some Christian youth with an opportunity to exercise sexual agency while also simultaneously strengthening their place within the broader Christian community that they are a part of. It is this dual character of the self and the self-embedded in others that, in my opinion, complicates Christian youth sexualities and makes the “abstinence is difficult, so use condoms” approach to HIV prevention with this group doomed to fail.

When abstinence is viewed as a core part of one’s Christian identity, succumbing to “sexual temptation”—a commonly used term among this population—means that one’s sense of self is disrupted, resulting in a deep sense of “guilt” in the youth who has failed to abstain. None of our HIV prevention interventions thus far attend to the issue of “guilt” in any meaningful way. What I see, instead, is a naïve belief that educating Christian youth on HIV and on correct condom use constitutes an effective HIV prevention response and no attempt is made to truly engage with the guilt and sense of personal failure that studies show Christian youth often experience when they engage in pre-marital sex. Guilt, as we all know, is a complex psycho-social phenomenon and more complex response than we have offered thus far. Under these circumstances, telling Christian youth that “abstinence does not work, so use condoms” is a pretty pathetic response. Thrusting condoms in the faces of Christian youth adds a second layer of psychological distress to these youth who, in most cases, are still trying to figure out who they are as “Christians” once they engage in premarital sex. These complications are what I think Lolo Jones was trying to get at when she stated that remaining a virgin was way more difficult than training for the Olympics. Whatever her reasons and motivations for not engaging in pre-marital sex, it is clear that this decision represents something of extremely great value to her and that she is committed to putting in the hard work that is involved. The general response to Lolo Jones, unfortunately, has been to trivialize her decision (What’s the big deal?) or even mock her for it. No one seems interested in learning about how she has successfully abstained and what she has to share about her journey in this regard.

As a society, our default position on abstinence is that it is a ludicrous and impossible expectation. While this is true in some contexts, it is not true in all contexts. Our failure and refusal to accept and support young people’s decisions to remain sexually abstinent until marriage must be viewed as a failure to recognize and support a specific type of youth sexual agency.

I worked on a longitudinal, qualitative study following 20 PLHIV over a 30 month period. Data was collected using repeat interviews and audio diaries (the latter of which are not discussed explicitly here). Through iterative analysis the study’s focus was honed to explore how PLHIV managed insecure delivery of HIV treatment, given that anti-retroviral therapy (ART) was intermittently missing from the State pharmacy shelves, and in particular how they coped with this in their daily lives.

Unlike the more common stories of the rejuvenating effects of improved access to anti-retroviral treatment in low income settings, in Serbia, a resource-stretched setting, life for PLHIV was characterised by deep uncertainty caused by erratic treatment supplies, continuing stigma and an atomised ‘community’ of PLHIV. There was minimal participation in ‘community action’ around HIV treatment access and anti-stigma efforts. But when I asked what their thoughts were for the future individuals were consistently hopeful. Despite their apparent despair in the political capacity to improve the situation and their resolute disengagement from community efforts they were hopeful things would get better.

I wanted to examine why they did not want to be involved themselves in community action and what the basis for their hope was, if they could not identify a source of effective action. But I found, and maybe it seems obvious now, that, however thoughtfully done, the act of asking about hope- why are you hopeful, what do you hope for- exposed its fragility. I had to step away from exploring it directly because of the risks it seemed to present in disrupting it.

So there are three key learning points that I want to share from this experience. They concern the methodological issues involved in examining the concept of ‘hope’ in relation to HIV/AIDS; the potential for researchers to raise false hope and expectations through conducting such research; and the emotional labour of undertaking this type of work for HIV/AIDs researchers.

How might we look at hope in the context of social research around HIV? My explorations in Serbia were primarily done indirectly, so that in both the data collection and analysis I looked at how hope (or its relative absence) was framed through other subjects. Yet, when it was spoken about it, it seemed to follow an incomplete logic. Informants consistently spoke about their own disengagement and disbelief that they would be part of any positive change in the future. They often could not describe the reason for their hope to me. Yet, they frequently talked about being hopeful. I was initially frustrated that I could not elicit why they felt that way or what their hope was based on. But in my analysis I came to understand that hope was created and maintained by informants rhetorically, i.e. through repeatedly talking about being hopeful explicitly in interviews seemed to affirm their belief in being hopeful. That the interviews and research in general, should provide such a significant forum to maintain hope exposed the limited resources and opportunities had by PLHIV outside of the research.

Unwittingly, this study itself became a source of hope and as a researcher this finding was a source dilemma and discomfort throughout the conduct of this work. This came to light as participants reflected on their transient support networks and opportunities and then as they described how this study became a source of stable support and comfort, not least because now they know “that there was someone doing something about it and it would get better.”  (‘It’ in this case was the insecure availability of State- funded HIV treatment in Serbia). Were participants’ comments to be ignored, addressed or dispelled? What would be the consequences of each of these options on the individuals’ well-being and the results of the research? The potential of social research to have a therapeutic function in relation to interactions with PLHIV raised two critical issues: the first is how the research was inadvertently changing the phenomenon under study; and the second is the ethical concerns that are provoked by raising (or maintaining) the expectations of participants beyond what the study can deliver. Much has been written about the effects of research on participants, but to my knowledge little has been discussed about the influence that the interaction with the researcher might have on participants in qualitative research- in this case garnering (potentially falsely) elevated hopes in the researchers’ capacity to instigate positive change. Certainly, there is little more than anecdotal discussion amongst qualitative researchers examining the uncertainty and trauma created by HIV/AIDS  and about the potential or actual influence their research may have on the informants perception of their condition.

As a researcher you can explain the limited role of the study, but this doesn’t mean that you can actually convince participants that the research at best will be part of incremental change when what they want to hear, because it is what is needed, is that it will bring a dramatic shape-up! At each stage of the study its time-bound nature and limited influence was discussed with the individuals. Towards the end of the study we held a focus group to discuss what else could be done with the research and came to a consensus on the aims, dissemination outputs and challenges we faced. Participants were given regular updates on the dissemination plans up to a year after the end of the study. I think this contributed considerably to ameliorating their disappointment that their early expectations were not met, but it also showed me that the capacity that I had to control participants’ expectations, as in most forms of control, was limited.

Finally, I want to discuss the effect of qualitatively researching HIV on researchers themselves. This is particularly pertinent when a researcher feels pressured to deliver unrealistic outcomes and is often working alone.  Given that much qualitative HIV research focuses on the experiences of those whose lives are characterised by insecurity, fear and social marginalisation (which in my case study was perpetuated, rather than instigated, by an HIV diagnosis), why don’t we talk more about how hard these stories are to hear and work with? The obvious answer is because it is fatuous to compare the hardship involved in experiencing and listening to the experience. The focus, rightly, has been on collecting evidence and then using this to urgently advocate for improvement. This is what needs to be done. But there is a secondary thread to this. Listening for three years to these stories – imbued with an unrealistic expectation, is affecting. To talk about the demanding effects this may have on researchers is not navel gazing, but fair and appropriate to ensure that researchers are equipped to continue to conduct such research.  Listening during the interview, writing the fieldnotes, trawling through the data during analysis- labouring over desperate incidents over and over again- takes a toll that would in other professions, such as social work, psychology, counselling, be managed as part of a professional duty of care and best practice. In research it is considered the responsibility of the individual researcher to ‘get on with it’. Few supervisors take the time or have the capacity to provide effective support. We need to take this element of our work more seriously. Not least by those of us who have a sharp awareness of the emotional challenges involved. We have a responsibility to other researchers who are about to go through it.  We can start by talking about it.