The first day of the conference with the sub theme of ”Access to resources: Commitment and Accountability”. The report covers a variety of sessions from the Symposia, debates, Global Village and reflections on the plenary written by members of the Community Rapporteur Team.
Access for all, to be truly effective and meaningful has to be translated in concrete terms, to make a difference in the lives and realities of people that live with, and are affected by HIV. Important issues were highlighted in a variety of sessions today, including a session in the Global Village entitled ”Does access for all include migrants”? (GV 2)
The session featured migrants from Vietnam and Burma, a trafficked woman from Nepal and a spouse of a migrant worker from the Philippines. They all spoke about conditions in migration, labor bondage and trafficked situations that put their health and lives at risk, particularly to getting infected with HIV/AIDS. Subjected to miserable working conditions and unable to access health information and services, migrant workers endure physical and psychological stress. Women migrants are particularly vulnerable to sexual and physical abuses. Those who are trafficked into bondage labor or sex work are even more at risk. In order to reduce vulnerability of migrants, female spouses and trafficked people to HIV/AIDS, it is imperative that their human rights are respected. They must be treated as human beings, equal to the rest of society who have health rights that require recognition, protection and fulfillment. Their right to work and access to redress mechanisms must be ensured so that they do not become vulnerable to exploitation and abuse.
The prevention session (BS01) looked at current challenges in HIV prevention and examined whether resources now directed at care and treatment were limiting resources for treatment. Most presenters concurred that the ”treatment vs. prevention” debate presented a false dichotomy, but there was an urge for caution against any decrease in the momentum needed to maintain prevention efforts and treatment was becoming more popular with politicians and better understood by the public. The panel higlighted the fact that the prevention and care/treatment have in fact more synergies that contrasts and that prevention and care/treatment should address the whole person.
ABC as a strategy is epidemiologically and programmatically sound, as was discussed in the debate session entitled ” Condoms Work, Needles Save Lives, Negotiation Empowers” (DB02). But by severely twisting the concept, the US government and its allies in the religious right have reduced the campaign to “Big A”, “Big B” and “little C”. Concretely, the US government has removed correct scientific information about condoms in its national institutes of health websites. The US government is in partnership with the Vatican in the campaign versus condoms, with the latter requiring the church hierarchy to denigrate condoms as flawed products. Millions have been persuaded by the US and religious right. Condoms are a key component of prevention strategy and have played a decisive role in preventing HIV in many societies. It must be seen as an integral part — and not as a separate strategy and must be judged, not on the quality of the product but in its effective use.
There is no clear evidence that abstinence only works. Marriage and illusion of fidelity is increasingly a risk factor. A young woman’s first sexual encounter need not be experimental – it could be marriage at 14 to an older man. So how can she say NO to this man, without risk of being beaten or thrown out of the house? Women’s vulnerability is intimately linked to power and negotiation is only possible between equals. In this context how practical is the ABC approach? Access to health education is more empowering as it builds self esteem. Young people want to know the full story about sexuality, about negotiation, about options because whether adults will like it or not, they will find out about it – either from their peers, the media, or others who will help them experience what they are looking for. ABC is a vague concept. Many young people are not very clear about what they are exactly abstaining from. Further, it excludes those without rights and those who don’t get into heterosexual relationships.
From a human rights perspective, young people must be viewed as human beings with sexual needs and rights. They have a right to make choices about their lives and sexuality.
In the Global Village programme, the session on ”Community Mobilization: From Examples to Replicable Models” The presenters and moderators drew out several lessons from these and other studies on how best to engage in community mobilization:
Community members must play the lead role in assessing their needs, assessing their capacities, defining their priorities and establishing their goals. This cannot be imposed from outside “expertise.”
Peers an play a crucial role in program/project design, delivery and evaluation, at the leadership and on the ground levels.
Communities are not homogenous. Communities can define their own sub-sets of communities. It’s important when doing so to avoid the “risk-group” mentality.
Community mobilization must start where people are, and recognize their current knowledge, lived experience and expertise.
Information is often not enough. Individuals and communities must be supported to explore their own understandings, interpretations and adoption of information.
Given the support and tools, communities can reach their own conclusions and can develop their own solutions. Social change and transformation can often be the result.
Skilled facilitation can be key to successful community mobilization. Community facilitators need training and ongoing support
The session on ”Mobilizing women leadersin the fight against AIDS: critical question for critical times (SY03), brought together a panel of high powered and influential women that addressed this critical issue.
The essential issue about women’s involvement in HIV/AIDS is taking personal ownership and increasing their leadership in all levels and sectors of society. Women must act out of the reality of their lives and take action, especially those who are living with HIV/AIDS. Other concrete strategies include;
Identify and strengthen networks of support of women in various levels and sectors of society to include, women living with HIV/AIDS; women in the communities; women political leaders; women in business, especially in pharmaceutical companies; women in the academe, etc.,.
Mobilize young women to become leaders and provide safe spaces for them to exercise their choices and decisions.
Utilize the media in providing role models of empowered women
Involve the women’s movement in the fight against HIV/AIDS as they have not played a key role in HIV/AIDS interventions. To achieve this, HIV/AIDS must be linked more closely to sexual and reproductive health and rights, which are core issues of the women’s movement. Faith-based groups must also recognize this link.
Work in partnership with men. But in order to achieve that, women must first strengthen and build solidarity among themselves. There is a need to change the mindset of boys and men so that they recognize and undertake their roles in reducing the vulnerability of women and girls.
Accelerate national development policies and use Beijing +10 platform.
Review laws that discriminate against women
Have serious investment for women.
End violence, trafficking
Ensure access to treatment
Improve health care system
The Silabha Art and Cultural Programme brings together a range of extraordinary artistic and cultural events and people from all over the world to share and express ideas and experiences relating to HIV/AIDS in creative ways – bringing out the issues which affect all of us into the open and helping to build greater understanding, and is one of the most extensive and interactive cultural programmes of the International AIDS Conference to date – truly demonstrating that culture is at the heart of everything that we do – it shapes our ideas, behaviour, expression and perception of the world around us. The cultural programme included poetry readings before the morning plenary, multi-cultural and interactive performances of music, song and dance at various locations around the conference center and the global village.
Participant quotes from the Coordination of effective AIDS responses at country level (Sy)5) session
“10 years ago we started to talk about the 3 1s (1 strategic framework, 1 monitoring and evaluation mechanism, and 1 national authority) coordination and all the terms that we call it. We still have not done it. We need to look at what has failed to implement before we move on.”
“There is no point in having the 3 1s if communities of people living with HIV, drug users etc are not included, because the interventions will be inappropriate and ineffective anyway. The incidence of the opening ceremony of the conference is an example of this.”
“We are building vocabularies around coordination and not doing anything, we need to take decisions”.
“The main stumbling block to coordination is that we are worried about control and competition”
Lets talk about strategies of how to make CCMs accountable.
“Workers constitute a majority of the people that are infected by HIV, the people that are economically active. We need to involve trade unions in national responses to the epidemic, they need to be part of the CCMs.”
”Scaling up access to treatment” was the sub theme for today’s conference proceedings. It was a little dissapointing that there was no community voice or perspective in the plenary entitled ”Scaling up access to treatment”, and it was evident that the latent capacity of community to be used more effectively in ARV roll out, is still not fully appreciated or understood.
Speakers in the plenary provided an update on antiretroviral therapies, an examination of the twin epidemics of HIV and TB, and an analysis of the diverse clinical manifestations of AIDS in diffferent areas of the world. In a stirring call to action on the ”3 X 5” initiative, the WHO Director Jim Joung Kim paid tribute to the role of activists in moving the world to action. ”Amidst our anger and frustration let us also remember our leaders who have brought us to where we are today” he said. ”The movement to expand treatment did not start and will not end with 3 X 5, it was led, above all, by the activists” he said. We should also remember the profound impact that the Durban conference had on ensuring that this was brought to center stage, and was no longer seen as a negotiable issue.
The WHO Director urged the delegates to take real and immediate action towards 3 x 5, and not to waste more time dwelling on what’s not possible, but rather make it happen, and called on activists to ”hold our feet to the hottest fire possible”. ACT UP Paris took up the challenge earlier in the plenary by taking over centre floor as French Prime Minister Jacques Chirac was introduced. ACT UP held up a large banner that stated ”AIDS: G8 must pay!”, and were joined by many delegates in the audience in chanting ”G8 – we can’t wait, where’s the 10 billion”.
The session entitled ”Cost of failed commitments – can we go back to course?” was an emotive and interactive session that highlighted the many varied and experienced voices of those living with, and affected by HIV/AIDS. The presentations were passionate, invigorating and almost a renewed call to action that was felt by many of the delegates sitting in the room. Graca Machel challenged the audience to think about ways of how WE can change the course of history by our actions, and went on to say that these conferences are filled with lots of promises, but most of them are not kept. A representative of the World Bank came under fire from one of the delegates after he painted a gloomy picture by using a model developed to forecast the impact of HIV on South Africa, without identifying strategies and concrete actions on what to do about the scenario, and was told that he was being irresponsible by not providing hope!
The issue of what role leaders need to play in holding each other accountable was passionately highlighted (although not discussed often enough), when a young HIV positive women from South Africa spoke directly to the session chair Graca Machel, and in an emotional voice asked her what she was doing, or what she could do to interact and influence what was happening with regards to South Africa and the confusion around the Minister of Health’s decision that “impacts and destroys our lives”. (Ms Machel requested to speak with the young women after the session). One of the leading activists from South Africa Zachie Achmat asked who was going to pay for failed commitments to date, and unfortunately people most affected by the disease were already paying for this with their lives. He challenged all people with HIV, who are fortunate enough to have access to treatment to ensure that there was no division created between those that have and those that do not have, and that it was our responsibility to ensure that we constantly speak out and advocate for, all people to eventually have access to treatment.
While the Community Rapporteur Team (CRT) was tasked with covering ”community aspects” of the conference programme, we felt that it was also important to cover abstract driven sessions that were of importance to communities infected and affected by HIV. The important role of community preparedness and community involvement in clinical research is an area that is not often understood, beyond just seeing community as trial participants or research subjects. This was once again illustrated in some of the clinical research related sessions that were covered by the CRT. As one CRT reported that the conference is full of presentations of various research undertaken mostly by scientists, researchers, academics and medical practitioners (and little community research, or community orientated research presented). The language used was often too scientific and technical and most of the researches do NOT speak to communities. There is something foreign and alienating about researches because even though they are culled from experiences of real people, the data is reduced to percentages, aggregates and averages which even the research participants themselves cannot recognize and understand. Sometimes, it is forgotten that these researches deal with real people, whose lives fuel the engine of these investigations.
Research must be demystified. It is a process that communities should be engaged in, not just as respondents or subjects, but also as investigators and researchers. Research must be placed within a broader societal context. Too often, in the course of many investigations on HIV/AIDS, the larger socio-cultural, political and economic determinants are not put into context. For example, there was research dealing with HIV vulnerability of certain populations that did not take gender issues into consideration. The translation of research into action must be probed for it to have real meaning and impact. It would have been more insightful if the presentations went beyond the sharing of results of the research but on the consequent actions and interventions that took place. How were interventions developed or improved as a result of the research? How were the interventions informed by the research? How did communities participate in the entire process? What were the barriers towards effective implementation of the recommendations of the research or translation of research findings into policy development and action? How can communities be empowered so that they get to be co-owners in the process? What practical steps can be undertaken to achieve this? These would have made a more interesting discussion and would have been more relevant to communities.
A paedeatric and HIV session was covered and although there was a wealth of slides, graphics and charts, the language of the panel was very technical and therefore hardly comprehensible by the community participants in the audience. It ended up being a technical presentation by technical experts for other technical experts. The presentations were aimed at calculating the impediments to Pediatric HIV/AIDS Care and Treatment. More specifically, they addressed the relationships between orphanhood and seroprevalence; sugar-daddies and seroprevalence; school-based prevention and seroprevalence; and, finally, the relationship between household wealth, school enrollment and risk of HIV-infection. All these studies were conducted mainly in sub-Saharan Africa and one from Mexico.
The conclusions were as follows:
In the Developing World, one often finds that:
Pediatric treatment often is a low priority
Paucity of pediatric health professionals
Lack of expertise and experience in pediatric drug dosing and monitoring
Complexity of pediatric treatment in the context of the family
Mistaken beliefs regarding the risks and benefits of pediatric treatment
Parental presence acts as a safeguard against HIV and other STIs
Sugar-daddies (or the much older boyfriends of young women) are, contrary to popular opinion, not more prone to risky behaviour than the rest of the male population and there is therefore no proof that they cause infection rates to skyrocket. (this final conclusion was extremely resented by the female audience who basically accused the survey takers of being a bunch of reality-ignoring foreigners who go to the third world with pre-conceived ideas and then try to twist the facts in order to fit the data).
Young people from poor households are less likely to be attending school.
Attending school is associated with early sexual contacts (predominantly female) and lower HIV prevalence
Successful poverty alleviation initiatives might improve school enrolment rates and therefore have a knock-on effect of reducing HIV rates in poor rural settings.
The scaling up of ARV therapy is the greatest challenge to public health, and we have to get it right in order to restore confidence in the public health care system. The session on scaling up of ARV therapy in resource constrained settings gave some insight in ”how to scale up” with examples from Uganda and Brazil. The Brazilian case is ”free access for all who need it” and based on the guiding principles of universality, equity, decentralization and participation , whilst the JCRC in Uganda situation is based on ”recovery model”, which relies on the capacity of its clients being able to contribute to the cost of their treatment. Issues that were identified as contributing to the success of the Brazilian model were strong civil society participation, an early and effective government response that included multisectorial participation and a carefully balanced approach and emphasis between prevention and care.
Community activists may find some interesting lessons from two evaluation projects that were presented in the session on ”Evaluation of HIV/AIDS policies and their impact on programs”, as they may be helpful tools for advocacy to improve public policy responses to HIV/AIDS. The one project described the macro-evaluation project in Central America conducted by the PASCA Project/Futures Group. The evaluation, known as the AIDS Program Effort Index (API), measures the amount of effort put into this response by domestic organizations and individuals and by international organizations. The API measures progress along a wide range of factors including: political support, policy formulation, organization structure, resources, M&E;, legal and regulatory, prevention programs, care programs, human rights and mitigation. It was noted that noted that political support would measure such outcomes as the number of time the head of state had spoken out against AIDS, whether there was a national AIDS commission, the involvement of people living with HIV in guiding state policy and other measures. The resulting evaluation will no doubt prove a useful tool for community advocates as they apply pressure to fill the gaps.
Another evaluation project of interest to human rights advocates was from Nigeria. In 2003, a group called “Journalists Against AIDS” launched a two-year investigative study looking at the gaps between stated policy commitments and lived practice. Not surprisingly, they found that there was little enforcement, legal backing, or general education to turn the commitments into reality. Stigma and discrimination unfortunately remain a reality for many infected with and vulnerable to HIV. The resulting report, and the group’s promise to conduct a follow-up study, will hopefully pressure governments to act to protect human rights with more rigour. The session highlighted the fact that policy evaluations can be an important tool for advocates seeking improved policy and practice in the fight against HIV/AIDS.
The CRT also managed to attend some of the satellite sessions, and in particuliar the important issue of ”Questioning the community sector”. This was a satellite co-hosted by ICASO and the International HIV/AIDS Alliance. ICASO published “Re-think, re-tool and scale-up” which called our community leaders to re-tool their thinking and efforts from the narrow silo interests of AIDS to more holistic approaches that include intimately inter-related priorities in environment, health, education, poverty alleviation, and human rights. Alliances and partnerships need to be built and strengthened with other non-state actors, specifically NGOs working on other development issues. The International HIV/AIDS Alliance presented a paper entitled “who will take the money a run with it?”. The paper reflected on the capacity to absorb and the capacity to disburse ”new” money, the challenges to provide an emergency relief and develop our community. The Alliance made a pledge for humility, describing the community response as the “glue that holds response to HIV/AIDS together, without our skills, insights, commitment and energy, million of dollars could fail. The debate moved into the concern of NGOs and CBOs in the field of the brain-draining process, many organisation faced when their experts or skilled colleagues migrate to INGOs that provide improved work options and better salary scales. A fair amount of discussion had happened in pre conference electronic discussion forums, so it was felt that a great opportunity was lost by rediscussing issues and challenges that have been discusse for the last 10 years, and not discussing more concrete strategies on how to develop capacity, be more accountable as a community sector, or ensure that we are able to retool sensibly to ensure a more effective scaling up of our efforts.
The other satellite that was covered was entitled ”HIV, Human Rights and IDUs” and was hosted by the Global Network of people living with HIV/AIDS. Peter Piot was the main speaker and acknowledged and thanked GNP+ for ”pushing the envelope” and contributing to the new leadership that is needed in the pwa movement.
”Ensuring access for youth and women”, a noble theme, but challenging to realise and ensure concerete strategies to move beyond the rhetoric. The plenary covered a variety of topics, and was also the only plenary that included a person living with HIV, as well as including the Jonathan Mann Memorial Lecture – a concept that was introduced at the XIII International AIDS Conference, by the AIDS 2000 Development Project (A community programme).
A large portion of today’s report will focus on the plenary, as the CRT felt that it was the ”highlight” plenary of the week. Unfortunately the CRT found it difficult to cover some of the other sessions as the quality of presentations and input presented was very weak.
Plenary: Ensuring Access to Youth and Women The Treatment Action Campaign (TAC) was given the space to raise the issue of access of pregnant women to nevirapine in South Africa. The alarm was raised on the recent action of the Health Minister and the Medicines Control Council to withdraw the use of nevirapine in the prevention of parent transmission to children and on the confusion she sowed because of her actions. TAC made the appeal to the scientific community to support access of treatment for women. It stressed its position of working in partnership with government to create solutions. But the question was raised, “what do we do in situations where governments continue to create confusion or undermine efforts of civil society in eradicating HIV?” If civil society groups raise the alarm, they are accused of being unpatriotic. Yet what could be more shameful or unpatriotic than letting a large segment of the population suffer and endure the impact of HIV infection?
There is a need to reach consensus about leadership and speaking out. HIV/AIDS is a political issue because what politicians, government ministers and officials say or do on the issue impacts on society as a whole. It also means getting the participation of the scientific community. Is the scientific community ready for this challenge? After the speakers from TAC had spoken, the chair of the session began her spiel by saying, “I think we can start the scientific session now”. Yet, another glaring manifestation of the binary split that has pitted community versus science in dealing with HIV/AIDS issues and all its dimensions.
Mary Crewe discussed HIV and AIDS and the education system, characterized today, as mentalistic, technocristic, with no vision of a society past AIDS. The curriculum is not transformative and there is no excitement in meeting the goal to eradicate HIV/AIDS. There is also no critical engagement with how this epidemic might positively transform and improve entire school systems. Young people in developing nations with high risk are not given education they need. We’re told that they need facts and skills, that they must not learn how to live but to survive. Is this enough? We need to find ways to transform education. We need to think and imagine a future rewritten by this epidemic. We need to seek new education explanatory models. How do we train teachers so that they also recognize their roles as change agents?There is danger when cultural theories transform into dogma. One example: ABC. This kind of education about HIV is susceptible to intolerance of other alternatives, choices and solutions. We can use AIDS education to bring back social integrity, equality and human rights, and to enhance sexual, racial and cultural diversity. AIDS education should embody messages of transformation.
Raoul Fransen and a representative of young positives spoke about the need to integrate young people in all efforts to respond to the HIV pandemic. They are the most affected but they are the least visible. They are not the problem, they are part of the solution. They are not target groups but a resource that can be harnessed. Improvement of young people leads to improvement of programs. Empowering youth builds self-esteem and having a new generation of people involved brings in new agendas and ideas. How do we involve the youth? Not by tokenism but by real participation in all aspects and levels of HIV/AIDS programs, from development, to implementation to monitoring and evaluation.
The head of the UNFPA spoke of the progress in the response to HIV/AIDS that has been made since the last decade. In the same vein, she also cited the persistent issues, continuing gaps and failed efforts. Women and girls are still the most vulnerable – as they continue to be coerced into early marriage, die of labor, contract sexually transmitted infections, have unequal access to education and health care, and are told to get married so that they will be saved from HIV. Poverty and gender discrimination must be confronted to halt HIV. There is a serious lack of condoms and female controlled prevention methods. These have to be continuously promoted and subsidized. The Global Coalition on Women and AIDS was formed to sustain efforts to prevent HIV infection among women and girls. Ten years after the International Conference on Population and Development (ICPD) in Cairo, world leaders have yet to keep their promise. AIDS has exposed social and economic inequities. We must promote and protect human rights of women and girls and condone violence against them. Violence is present in peacetime and war. All rape survivors must have access to counseling. Human rights begin at home, but ultimately the government is accountable. Failing to curb HIV is a crime against humanity. We must work together to scale up response. Some leaders are asleep or in denial. We need the Cairo agreement to be funded in full for reproductive and sexual health programs. We must make money work and ensure that resources and services reach the most vulnerable.
Jonathan Mann memorial lecture
“Our response to HIV is the central test of human decency and solidarity.”
Dennis Altman’s talk focused on MSMs, IDUs and sex workers. He cited actual situations, difficulties and actions undertaken by such communities in the fight against HIV/AIDS. He noted that there is a conceptual problem in lumping vulnerable populations together, but then if they can organize around an identity, they can be a potent force.
Without respect for human rights, there is no security. Unfortunately, the resources to check HIV is small compared to the resources to check security. There are many different ways of acting out being a man. Men who deviate from cultural and social ideals of masculinity are more vulnerable. The more socially marginalized the individual or the community, the greater the vulnerability. However, there can also be a problem in talking about vulnerable populations as people may not name themselves in these ways. The recurring fear of stigmatizing homosexual men by putting them close to HIV, has unfortunately also resulted to their invisibility. The same can be said for other “vulnerable” populations. Structural interventions recognize that vulnerability goes behind personal behavior. Good interventions include legal and social interventions. They support people and protect their choices. They provide safe space for those whose behaviors put them at risk, such as safe street areas for prostitution or drop-in centers for homosexuals.
The session on the involvement of stakeholders was a diverse session covering issues related to scaling up of ARVs, community mobilization around HIV vaccines, PMTCT and stigma and discrimination. Many of the presentations highlighted the impact that involving communities in programmes and interventions can have on the outcome of the project. The development of ARV competent communities requires training, information and ongoing support to make them more effective, and people living with HIV/AIDS have a range of important roles to play in community preparedness for ARVs. Community preparedness for ARVs will mean having the necessary information, knowledge, skills and materials including regular uninterrupted supplies of medicines and diagnostics. Another presentation focused on the valuable role that people with HIV/AIDS can and do play in scaling up treatments, where the PWAs are trained as assistant pharmacists, treatment literacy educators, and counsellors.
Although it was encouraging to see the issue of MSM (males who have sex with males) in the conference programme, it was a little dissapointing that it seems as if the ”homo” has been taken out of sexuality, and no session concentrated on the issues and challenges related to homosexuality as an identity. A session that was convened by MSM groups from Asia Pasific and other region presented a draft statement on MSM issues, to be presented as part of the Leadership Forum of the conference. The draft statement was produced with assistance from UNAIDS and in essence requested the following broad issues; from States there was the request for basic human rightsr for males who have sex with makes and for States to be accountable to address the issue of violence against this group. From donors, there was the request for adequate resources to fight HIV/AIDS within this population and all its diversity and from civil society there was the request to take the issue of MSMs more seriously.
An interactive workshop in the skills building programme entitled ”reducing stigma and discrimination in health care facilities” highlighted that when dealing with HIV within the health care setting, health care professionals need to be held accountable for the way in which they treat patients if it is discriminatory and contrary to their professional standards. Communities should remember that health professional are also part of society and have the same shortcomings/prejudices displayed by other people, and therefore there is a pressing need for health professional to be educated to see the social rather than just the medical aspects of HIV. This can not always be left to governments or professional institutions.
The session on “Reproductive Health: Vital for an Effective Response”, was a well organised and coordinated panel discussion. The speakers agreed on the fact that it is absolutely essential to reaffirm the linkages between HIV/AIDS and sexual and reproductive health, and their inter-relationships with broader issues of public health, development and human rights, as agreed by the international community in the following commitments: the Cairo Convention of 1994, The Beijing Declaration of 1995, The UN Millenium Declaration and Millenium Development Goals, 2000 and the UNGASS Declaration of 2001. Concrete recommendations on issues related to policy and advocacy, programme development, resource mobilisation, monitoring, evaluation and research were discussed and explored.
Although the precedent was set by the inspiring plenary presentation by Raoul Fransen (young man living with HIV), who demonstrated strong leadership qualites, we lost a great opportunity to discuss leadership issues within the ”PWA movement”. In the ”meet the leaders session – PWAs”, issues of leadership, accountability and requirements to develop and sustain leadership within the movement were not discussed as the session a GNP+ and ICW board members session. The networks invested most of the session describing their role within the GFATM and in organising the conference, and ended up being a defensive, reactive GNP+ session as opposed to defining and understanding what me mean by positive leadership.
”Expanding options and access for prevention”
Community activist eager to know the impact of their efforts would find some interesting lessons, and some familiar conclusions, from this session on assessing program effectiveness.
A review of monitoring and evaluation systems in Brazil, Cambodian, India and Kenya concluded that monitoring and evaluation were generally weak, and particularly lapse in evaluating the impact of NGO programs. Presenter Martha Ainsworth from the World Bank urged countries and organizations to develop monitoring processes that track trends over time, rather than those that produce single “snap shot” results. She also urged organizations to build monitoring and evaluation processes up-front in program design, rather than add them on as an after-thought or as an obligation to funders. She noted that funders should encourage monitoring and evaluation as a supportive, not punitive measure.
An evaluation of an extensive public education campaign in South Africa, dubbed the “khomanani campaign” found that found that the campaign had had extensive reach, and a significant impact on attitudes and behaviours. The campaign, which included messages encouraging solidarity with people living with HIV, motivated many to be more supportive. Not surprisingly, the evaluation found that the campaign had had its biggest impact when it was supplemented by local “face-to-face” community education. The evaluation noted, however, that community activities were limited in their reach.
An evaluation of HIV prevention programs in India led to conclusions familiar to community workers across the world. The most effective prevention strategies involved targeted outreach, peer training and education, and links with STD diagnoses and treatment. Vulnerable populations (including MSM, sex workers, and people living with HIV) reported significant changes in knowledge and in risk behaviour as a result of the programs, but noted that stigma and discrimination remained major issues for them. The key barriers to further success of these prevention programs will resonate with many: inadequate funding, lack of long-term funding, and inadequate training and compensation for community-based workers.
Monitoring and evaluation should be built into program design from the outset, not as an afterthought to satisfy funders. Funders should support evaluation as a self-improvement process, not a punitive measure.
Large-scale social marketing campaigns are most successful when accompanied by local community-based education efforts.
HIV prevention campaigns work. But they need adequate, stable funding and well trained and compensated staff to have impact over the long-term
A multi-stakeholder symposium featuring two Jonathan Mann Memorial awardees, Dr. Cynthia Maung and Irene Fernandez (representing migrant workers and NGO, respectively), and representatives from government, donor and international organizations discussed the various facets of stakeholder involvement and responsibility in finding solutions to HIV Vulnerability of Mobile Populations. Chaired by Dr. Mary Haour-Knipe of the International Organization of Migration, the co-chair, an asylum speaker in the Netherlands could not attend the meeting because of travel restrictions. His situation highlights the limits of engaging migrants in HIV/AIDS responses.
I. Dr. Cynthia Maung spoke about the situation of Burmese workers at the border and the factors that impede their access to health services and information, particularly on HIV/AIDS. These include: language barriers, constant fear of arrest and harassment and their displacement due to economic and political reasons have rendered Burmese migrants. They are left untreated until they require emergency care. Dr. Maung also stressed the difficulty in measuring HIV prevalence among unstable populations.
Without registration, Burmese migrants cannot access the public health system. Because some of them are not just fleeing poverty but also political repression, registration is not an option for them. Others cannot simply afford to pay the registration fees.
She further stressed that community participation is key to addressing HIV/AIDS.
If migrants are continually prevented from seeking health care and counseling, their vulnerability will continue.
II. Government speaker: government minister from Uganda How can HIV/AIDS programs be successfully integrated among mobile populations, particularly with refugees, internally displaced persons, and labor migrants?
Have governments formulated policies? There are barriers ranging from culture, religion, language, stigma and discrimination.
The presenter stopped at the level of proscribing integration of HIV/AIDS programs among mobile populations. She did not link the basic about the push and pull factors of migration. Indeed, if the reasons for being displaced and being mobile are not resolved, the HIV/AIDS interventions will only achieve a cosmetic effect.
III. International organizations, Paul Speigel from UNHRC Challenges faced by international organizations in HIV/AIDS programs for mobile populations:
Coordination of numerous structures in the global, subregional, regional, country level and field level
Non-inclusion of Mobile populations into proposals and interventions by the national government and consistent exclusion from programs of host countries.
Protection from gender violence, discrimination and stigma, (mandatory) HIV testing, access to equitable services.
– Mandatory testing resulting to denial of asylum, resettlement and right of return according to HIV status.
– Lack of informed consent prior to further disclosure of HIV status
– Systems for protection, HIV care and treatment available post-testing.
Collection of reliable data for use in assessment, decision-making, monitoring and evaluation, and advocacy
Problem in implementation of effective, equitable and sustainable programs
IV. Irene Fernandez
Stigma is rooted in all our lives, borne out of categories and classifications among people. Migrants are often stigmatized as the cause of crimes or transmitters of disease. Stigmatization results into multilayered process of devaluation and discrimination. Steps for changes
Community of migrants and spouses have to be involved. Without the human rights framework, we cannot bring in change. Rights have to be integrated. There has to be synergy in human rights and public health policies. Above all, recognize that health is a commodity and not a right.
Challenges for donors
Migrants are left off the national agenda and this can be due to negative perceptions, e.g. they consume more than their share or they contribute disproportionately to the spread of diseases. This can be due to a lack of analysis and understanding of the situation of migrants and the unwillingness of host governments to recognize migrants.
Key challenges for donors
Monitor and anticipate migration patterns
Address the entire mobility system
Foster enabling environments – improve legal and policy framework
Ensure participation of migrants
Control of the worst forms of migration, e.g. trafficking
Identification of high risk situation
Recognize migration as an effective livelihood strategy
Promote inclusion of migrant directed policies in national aids strategies.
Develop/support regional strategies programmes.
The presentations were of varying perspectives but it allowed for a more comprehensive view of migration and HIV/AIDS issues. However, they also had diverging and conflicting strategies in responding to the problems presented. Such forms of discussions should be sustained in succeeding conferences.
The Graffiti Wall
Messages of hope. Greetings to friends. Remembrances of those who have died. Calls to action. The graffiti wall has become a space for communities to articulate, express and make visible their voices and thoughts. The messages are clear and sharp, the same ones repeatedly articulated in the last four days of the conference. “Treatment Options for women”, “Where is Middle East and North Africa in the fight against AIDS?”, “Free ARVs for people living with HIVAIDS!” The Graffiti Wall is not just a venue for self-expression. It also inspired debates and conversations. One message read, “Learn sex in marriage and live an AIDS-free life.” The response to it was, “Which can be a risk factor – marriage”. Another one added, “Learn safe sex in brothels.”
Migrants and Spouses Community Exchanges at the Global Village
“In my life as a migrant worker, I had to deal with a lot of discrimination and abuse. But through the sharing, I’ve come to know that there are migrants like me who have been through a worse off situation. I feel comforted and supported to be part of this group, to have people share and listen.” (Nang, migrant worker at the Thai-Burma border)
“I have learnt a lot through the daily workshops organized in the community exchange programme. Before I left my country, I had to go through a medical examination, but nothing was mentioned about HIV/AIDS. The sessions where other migrant workers share their experiences was very informative… when I return home, I would like to join an NGO or Community-based organization so that I can share my experience and information to my community, especially those who are uneducated.” (Lalitha, domestic worker from Sri Lanka)
“Before I came, I was concnered about how I would adjust with the people from different environments, who spoke different languages. I realize this will be a barrier to getting to know people better. However, with the translation, I gained a lot of knowledge through the experiences shared at the Community Exchange sessions…” (Jamuna, spouse of a migrant worker from Nepal)
CARAM-Asia, a regional network of NGOs working on migration and HIV/AIDS issues, mobilized 17 migrant workers and female spouses of migrants from different countries in Asia to come together for a community exchange program at the Global Village. Most of the participants have not traveled anywhere and it was their first time to meet and speak with spouses and migrants from other countries. It was also their first-time to attend an international AIDS conference. Despite their limited access to the sessions in the conference program, the participants were able to conduct substantial discussions about their experiences as migrants and spouses, particularly on their vulnerability to HIV/AIDS. The community exchanged program also exposed them to other communities who were equally at risk, such as sex workers, young people, and MSMs. Forums such as these provide real opportunities for people from the grassroots to come together and collectively reflect on their experiences, as well as plan future actions. Will the next IAC be able to provide the same opportunities, or better yet, provide real access and spaces for such exchanges within the main program?