SOCIAL AIDS

This is the second series of notes compiled by Warren Feek around the XVII International AIDS Conference in Mexico City, Mexico (August 2008). The first - "The Real Stuff" - communicated the set of overall HIV/AIDS policy themes developed through an online dialogue and review process by an extensive group of HIV/AIDS communicators before the Conference.

Put forth following the Conference, the note below provides an introduction to the prominent challenges, impact data, and strategic thinking that shaped the dialogues in Mexico City. The content for this note was gathered by a group at the Conference that included Sue Goldstein, Carol Larivee, Denise Gray-Felder, Cathy Watson, Robin Vincent, and Warren. This work was supported by the Joint United Nations Programme on HIV/AIDS (UNAIDS) through the offices of Brazey de Zalduondo.

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If the previous International AIDS Conference in Toronto in 2006 could be called "the circumcision conference", because of its predominant focus on that possible programming response, then the XVII International AIDS Conference in Mexico City was the social conference. "Social" was breaking out in discussion everywhere - social drivers, social complexity, social change, social mobilisation, social movements, social stigma, socio-economics, socio-cultural factors, and social phenomena (from homophobia to gender equity). This was a move back to the fundamentals for an effective long-term response - the social response.

The notes that follow are observations and highlights from the Mexico 2008 Conference pertinent to an increasing policy priority on, and investment in, a social movement/change/norm/mobilisation focus for more effective HIV/AIDS action.

These notes should be read in conjunction with the policy themes developed by a group of HIV/AIDS communicators from around the world who gathered online in advance of this conference to develop their policy ideas, from their experience and analysis, for more effective HIV/AIDS action.

There is a distinct emphasis in the below on relevant data.


THE CHALLENGE


Even though the UNAIDS data show some indication of SOME positive progress, it is clear that the programmatic challenge remains huge from any perspective that one takes on the epidemic.

The prevention challenge was perhaps best exemplified by the analysis from Geoffrey Garnett [Imperial College - London] in the Plenary Session [Monday] reviewing trends in the epidemic: he highlighted that "if sexual partners were reduced by 50% and if circumcision was adopted then we would be closer to keeping the epidemic under control". Both of these elements have deep and sensitive cultural and social roots - they will not be changed by traditional, individual behaviour-change-focused, information-based initiatives.

From a treatment perspective, Alex Coutinho [Infectious Diseases Institute - Uganda] at the same session highlighted the major issues involved with access to treatment: "For every 5 people infected three die without ever getting treatment during their lifetime." And Jaime Sepulveda [Gates Foundation], commenting on the fact that the number of new infections is still hugely outpacing the growth in access to treatment, noted that "massive change is required if we are to reach this turning point in the next few years." Massive change requires very significant work that is based on social norms, social movement, and social mobilisation principles.


THE DATA


1.Prevention Overview


The Lancet held a packed session releasing its August 2008 issue on HIV prevention. The issue includes numerous data and conclusions stressing: a long-term approach, programmes that emerge from and respond to local contexts, the 'political' nature of the strategy and programming choices that are made, the imperative for seeking change at the level of social norms, etc. - many of the themes that the communication group highlighted below.

Some examples:

"Follow up data at 6 to 9 months showed that change in housing status was associated with change in HIV/AIDS related risk behaviours...[including]...needle sharing and unprotected sex in comparison with individuals whose housing status did not change" [Aidala et al - Housing Status and HIV Risk Behaviours, AIDS and Behavior 2005, 9, pp. 251-265]

"Community solidarity" strategies involving women sex workers in the Dominican Republic "were assessed via pre-intervention and post-intervention cross sectional surveys, testing for sexually transmitted infections, participant observations, and serial cross-sectional screenings for infection. Results reveal significant increase in condom use with new clients (up from 75% to 94%); significant increase in condom use with regular partners (13% to 29%); significant reductions in prevalence of STIs (29% to 16%) and significant increases in sex workers verbal rejections of unsafe sex (50% to 70%)." [Kerrigan et al Environmental-Structural interventions to reduce HIV/STI risk among female sex workers, American Journal of Public Health 2006, 96, pp. 120-125]

"There are also country examples of successful structural approaches...Uganda...reported falling HIV prevalence throughout the 1990s...the most common explanation...was how through a range of actions the country created an open, enabling environment for confronting the epidemic...Although definitely attributing causality to any one programme or strategy is difficult, the example of Uganda illustrates that national level social mobilisation and policy efforts to involve local agencies and enable tailored structural approaches to HIV prevention are possible." [Rao Gupta et al "Structural approaches to HIV prevention," The Lancet August 2008, p. 57]

2.Communication Programme Impact - 3 Examples

a. Soul City - South Africa

Soul City is a national health promotion and communication intervention using mass media and social mobilisation to effect social change. The data cited below come from a secondary analysis of data collected to evaluate the 7th series of Soul City, which dealt with antiretroviral therapy (ART) amongst other health issues.

The Study: The original study was a nationally representative survey of 1,500 adults over 16 years. The outcome variable was a scaled measure of stigma consisting of 9 items (Cronbach alpha = 0.604). A multivariate analysis was performed using demographic variables, media exposure, and some variables measuring aspects of social capital.

Confirmed Hypothesis: The hypothesis that high social capital would predict low stigma was partially confirmed, in that the items "feeling safe in the community" and "participating in an event" were related to lower stigma.

Analysis: Data were analysed using STATA 8. The outcome variable was a scaled measure of stigma consisting of 9 items (Cronbach alpha = 0.604). This was converted into a binary stigma variable and was regressed on a number of variables including: general media exposure; knowledge; traditional beliefs; demographics; race; and measures of social capital - the influence of broader public debate; leadership's response to HIV/AIDS; and other personal contextual factors such as: knowing someone with HIV or on ART, whether the respondent has been for an HIV test in the past year, and purposive communication including the Soul City, loveLife, Tsha Tsha, and Khomanani initiatives.

Change Relationship to Programme Intervention: Exposure to 2 Soul City media (among other health communication programmes, such as Soul Buddyz and Khomanani) and participating in training or an event were associated with lower stigma. This is encouraging as it points to the media having a positive effect on stigma.

Conclusion: This analysis suggests that traditional beliefs and religious affiliation are key predictors of stigma. Race, education, and the church remain important in stigma. Although the relationship is complex and needs further research to fully understand, health communication has a positive effect on stigma.

Strategy and Programme Implications: Increasing accurate HIV/AIDS knowledge, implementing anti-stigma training in the outreach work of churches, and improving VCT services will all assist in decreased self-stigma, improved adherence, and, in the long run, improved HIV prevention.

*These data are from a poster session conducted by Soul City at the Conference. Click here to download a Word version of the data from that presentation.

b. Puntos Encuentros – Nicaragua

An evaluation of the Puntos initiative "Somos Differentes, Somos Iguales " [SDSI], a communication for social change strategy that aims to prevent future HIV infections in Nicaragua by means of mass communication actions, was presented. Highlighted at their poster session was these data:

Scale: "9 out of 10 people interviewed in Nicaragua were familiar with at least one of the mass communication components" - data from a properly constructed national sample.

Stigma: "a significant reduction in stigmatising and gender inequitable attitudes" attributable to SDSI - "the attitude of 22% of those respondents who do not agree with the statement that 'women who carry condoms in their bags are easy'"; and "the attitude of 19% of those who would eat at the same table as a person with HIV."

Services: "an increase in knowledge and use of HIV related services" attributable to SDSI - "35% of those respondents who in the last 6 months have been to a center to address issues related to sexuality."

Priority: "a significant increase in interpersonal communication about HIV prevention and sexual behaviour and...community based dialogue on key topics" attributable to SDSI - "21% of those respondents who had talked to someone about one of these [HIV-related] issues over the past 6 months."

Protection: Attributable to SDSI - "23% of those respondents who said that they had talked to their partners about using a condom in the past 6 months"' and "18% of those respondents who reported using a condom during their last sexual relationships with a casual partner in the past 6 months."

**These data are from the Puntos Encuentros/SDSI poster session at the Conference. For more information about Puntos de Encuentro and the evaluation, click here.

c. Straight Talk (STF) - Uganda

The Ugandan non-governmental organisation (NGO) STF has been implementing mass media communication programmes in Uganda since 1993 in an effort to bring information about sexual and reproductive health to young people. This initiative draws on person-to-person contact, radio, and printed materials to share information among, and foster communication between, young people and influential adults (e.g., parents and teachers) about adolescent sexual and reproductive health (ASRH), including issues related to HIV/AIDS. For more information on STF in Uganda, click here.

These data are based on their recently completed evaluation:

Impact on Youth: Exposure to STF materials was significantly associated with ever having talked with parents about ASRH - among both males and females. Researchers found that greater exposure to the materials is significantly associated with higher ASRH knowledge, and each incremental exposure is associated with increased knowledge. For more, click here.

Impact on Parents: Overall, there was a direct correlation between parental exposure to STF materials (residing in a high-intensity district) and the parent having talked with the child: 56% of those in high-intensity districts had had such a talk, compared to 40% of those in low-intensity districts. About 62% of parents who had read Parent Talk (52 parents) said that they took some type of action as a result of reading Parent Talk. For more, click here.

Impact of Mass Media Initiatives: Evaluation suggests that exposure to STF materials has improved adolescents' knowledge and attitudes about sexual and reproductive health and helped them to adopt safer behaviours, and it identifies specific impacts in these areas. The evaluation also revealed some disturbing attitudes among parents, many of whom are unable or unwilling to talk with their adolescent children about sexual and reproductive health. One-quarter of parents feel that males should be favoured when financial resources are scarce; about the same percentage feel that girls are intellectually inferior to boys; two-thirds agree that women should tolerate abuse from their husbands to keep a family together; and one-third report that there are times when women deserve to be beaten by their husbands. For more, click here.

Evaluation of the School Environment Program (SEP): Teachers sensitised under SEP were more likely to report feeling confident about talking to adolescents about sex and growing up, but not more likely to actually do so, when compared to those not sensitised by SEP. However, schools where SEP was implemented were more likely to have an adolescent-friendly environment compared to non-SEP schools. For more, click here.

Parent Survey: Interviewed 678 mothers and fathers with adolescents between 10 and 19 years of age. In short, the study found that parents are an important audience for STF materials - with about 60% having been exposed (mostly to local language STF radio shows). However, organisers find that parents still need considerable help talking to their children about ASRH issues. More positively, there was a direct correlation between parental exposure to STF materials (residing in a high-intensity district) and the parent having talked with the child: 56% of those in high-intensity districts had had such a talk, compared to 40% of those in low-intensity districts. For more, click here.

***This information is from the Straight Talk Foundation poster session at the Conference. They also relate to documents available on The CI website - see links above.

3.National Implication – Data and Strategies

Though the starting point for this insight comes from the recent "corrections" to HIV incidence rates in the USA - and particularly within the Black community in that country - the response to that data highlighted what happens when the family, community, state, and national conversation and dialogue on HIV/AIDS drops off the priority table.

These quotes from the Black AIDS Institute report "Left Behind" which was released at the Conference:

The background data include: "Standing on its own [as a country] Black America...would rank 16th in the world in the number of people living with HIV"; Despite extraordinary improvements in HIV treatment, AIDS remains the leading cause of death amongst Black women between 25-34 years of age and the second leading cause of death in Black men 35-44 years of age"; Blacks make up 70% of new HIV diagnoses amongst teenagers and 65% of HIV infected newborns [in the USA]."

The analysis of why this situation exists highlights government policy, priority, and financial issues but stresses deep social norm and cultural factors as being equally important - for example: "The SILENCE [our caps] that masks the particularly high risk of HIV risk confronting men who have sex with men in Africa and other highly impacted regions also exacerbates AIDS in Black America"; "As in many other parts of the world, many Black women in the US are rendered vulnerable to HIV as a result of GENDER INEQUALITY [our caps]...underscoring a programmatic and research priority both in Black America and throughout the world."

The policy and programmatic prescription in this report begins with this lead item: "Where national AIDS responses have succeeded, communities have mobilised to fight stigma, overcome prejudice and promote solidarity in the fight against the epidemic. While leading Black organisations, publications and constituencies are placing increasing priority on the fight against AIDS, they are typically doing so without the support of the US Government. Lacking sufficient resources, the efforts of these groups have yet to achieve maximum impact. Enhanced support for community mobilisation in Black America is urgently needed."

STRATEGIC OBSERVATIONS

Modes of Transmission

UNAIDS has initiated a three-pronged study in eight countries, called the Modes of Transmission Study. The three prongs include:

1. Examination of where new infections are occurring
2. Review of programming
3. Review of funding

In both the Lesotho presentation and the Uganda presentation the issue of communication was raised as a gap area. In both cases the issue of "message" not being effective or appropriately targeted was raised. In a subsequent discussion with Mr. Khobolo from Lesotho, he raised the need to have a broad social campaign or "social movement " to discuss the underlying issues of risk and alcohol use that fuels the epidemic. He calls for a community and society discussion. While this does not provide evidence of the impact of communication for social and behaviour change, it clearly identifies the gap in communication programming.

Sunday, August 3rd - Debrawork Zwedie, Chair

Women and Prevention

Julia Kim, from the University of the Witwatersrand in South Africa, reported on the IMAGE study, which looks at the structural interventions, such as microfinance, providing a safer space for dialogue on risk behaviours and prevention options.

One major take-home message is that we need to go beyond randomised controlled trials (RCTs) and think differently about collecting data on what is effective. Although 9 behaviour change RCTs failed (it would be useful to understand what they were and the communication components of these studies), it is clear that behaviour change programming is working in many situations.

Participative Communication and Research Design – a Cautionary Tale

Participatory communication is not often associated with effective research. One session at the conference provided a fascinating insight from a People Living with HIV/AIDS group in Thailand about how the failure of a research organisation to consult with the participants in their research trial for a possible new drug significantly undermined the efficacy and accuracy of that trial. This failure was particularly notable considering the participants’ overtures to the researchers to be able to ensure that their voices and ideas were considered in the research design decision-making process. The failure to engage with this group - to hear and consider their ideas for improving the research design based on their local knowledge and insights - resulted in much diminished research quality.

The subject group was paid to participate in the trial. That revenue was important to them. But they did not trust the researchers, following the way that they were treated. So, passive resistance such as unreported non-compliance followed. The research was corrupted.

Monday August 4th – Community Participation in HIV Related Clinical Research – 11:00am to 12-30pm – Thailand presentation

The marriage of Prevention, Care, and Treatment

HIV prevention, consisting of combination prevention "married to" treatment and care, is a central focus, if not the dominant theme at the Mexico AIDS conference. Myron Cohen said on Tuesday that prevention and treatment have been "engaged" for 25 years. They "need to get married" and to do it today. He cited Solomon and Stover’s modeling that indicated that this "marriage" could avert 28 million new HIV infections and 10 million deaths by 2015. While the focus on the Prevention plenary was on biological issues and strategies for preventing sexual transmission (probability of infection per exposure, vaccines, and ARVs) he stressed that combination prevention was essential, and cited behavioural and structural intervention strategies as parts of the package needed to get proven barrier methods and future vaccine-based and ARV-based prevention strategies into actual use.

Global Prevention Group

The Global Prevention Working Group (WG) met on Saturday before the conference, and the press conference on Monday offered a very concise summary of issues. The dominant message was: HIV prevention is difficult, but doable. If known and effective prevention strategies were brought to scale, a dramatic decrease in new infections could be achieved; and without a dramatic increase in effective combination prevention, new infections will continue to outstrip treatment gains. The WG also stressed that the difficulty of HIV prevention work was not a reason or excuse not to do it.

HIV-related Stigma and Discrimination

The fight against HIV-related stigma and discrimination has been elevated to a whole new plane in Mexico 2008. It has been a theme in conference pre-meetings – Living 2008, and the Ecumenical pre-conference, the [Men Who Have Sex with Men] MSM meeting, the huge march against homophobia, in Jorge Saavedra's poignant remark -"Finally, a plenary on men who have sex with men!", and a wide range of plenaries and sessions. It is evident that stigma and marginalisation block access and participation for vulnerable groups. Also evident is a new energy and a wide array of programmes that are combating stigma and discrimination (S&D). And a range of tools for measuring the effects of stigma reduction programmes are being reported. Ten years ago the AIDS community could say we knew S&D were important but we didn’t know what to do about them. Today, we see they are still as important, but we have programme models and strategies to combat them, and tools for monitoring and evaluating these programmes, to show what progress they are making.

POSSIBLE BOXES OR BLOCKS FOR UNAIDS REPORT

a. Soul City - Explaining the Social Change Communication process as an essential strategy for achieving universal access to HIV prevention, treatment, care and support (Poster WEPE0371)

Soul City [Southern Africa] is one of the world’s leading social change communication agencies. Here is how it explains the essential nature of social change communication for making positive progress on HIV/AIDS issues.

-Click here to view "SCC Slide on Soul City…" in PowerPoint format.

b. Caribbean Vulnerable Communities Coalition - Ecological models illustrate "levels" or "layers" of influence that affect individual opportunities and choices. Different stakeholders operate at these different "layers" and all must be reached using appropriate channels and activities in order to shift the barriers to universal access.

-Click here to view "Jamaica – Ecological Model..." in PowerPoint format.

- Click here to view the full presentation from which this model was presented.