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International HIV Treatment Preparedness Summit

March 13 - 16, 2003
Cape Town, South Africa

Final Report

At the International AIDS Conference in Barcelona, July 2002, the World Health Organization (WHO) announced its goal of scaling up to provide antiretroviral (ARV) therapy for 3 million people with AIDS in developing countries by 2005. Reaching this goal will require a massive effort by multinational agencies, governments, private foundations and employers, the pharmaceutical industry, and by the community organizations that represent people with AIDS. On March 13 - 16, 2003, 125 community-based HIV treatment advocates and educators from 67 countries met in Cape Town, South Africa to discuss their needs and strategies as this scale-up process proceeds. The conference was organized by an ad hoc group of community-based organizations and individuals representing all global regions and was hosted by the Treatment Action Campaign of South Africa. In addition to the conferees, representatives from several funding organizations, including private foundations, United Nations (UN) agencies, and the Global Fund to Fight AIDS, Tuberculosis and Malaria (GFATM), attended the conference as observers and to discuss with participants their goals and processes in funding HIV-related advocacy and education efforts. This report describes both the process of organizing the conference and its outcomes.

Table of Contents


Executive Summary

(Table of Contents)

On March 13 - 16, 2003, 125 community-based HIV treatment advocates and educators from 67 countries met in Cape Town, South Africa to discuss their needs and strategies to ensure implementation of the WHO goal of providing HIV antiretroviral therapy (ARV) to 3 million people by 2005. The conference was organized by an ad hoc group of community-based organizations and individuals representing all global regions. Logistical support was provided by the Treatment Action Campaign (TAC) in South Africa and by Gay Men's Health Crisis in New York. In addition to the conferees, representatives from several funding organizations attended the conference as observers and to discuss with participants their goals and processes in funding HIV-related advocacy and education efforts in the developing world.

Five regions were defined and a Working Group, made up of representatives from each region, coordinated the conference preparation. A set percentage of participants from each region was determined based on the gravity of the epidemic there. In this way, diversity was ensured and no single region dominated. The conference paid all expenses for participants to attend the Summit. The percentages were set as follows:

  • Africa - 30%
  • United States, Canada, Western Europe, Australia, New Zealand and Japan - 15%
  • Latin America and the Caribbean - 15%,
  • Asia-Pacific (East Asia and Pacific, South and Southeast Asia) - 25%,
  • Eastern Europe and the States of the Former Soviet Union/Central Asia - 15%

The participant list for the summit was developed through an application process, which involved regional selection and nominating subcommittees. The Working Group developed an application form and disseminated it widely, utilizing organizational lists and various databases from each region. The regional selection and nomination subcommittees were also each responsible for disseminating the application, and for reviewing applications and selecting the participants from their respective regions. Only those applicants selected could attend the meeting. This representational structure and selection process was completely developed by community members and, to our knowledge, was a truly unique and successful approach.

In organizing the Summit, the primary goals were to:

  • Develop a framework for the creation, maintenance and enhancement of local and regional treatment preparedness efforts around the world;
  • Provide an opportunity for advocates to begin crafting a template for approaching foundations, national governments, and international organizations to directly support local and regional efforts for education and advocacy in the developing world;
  • Provide the first chance for many people working on treatment preparedness around the world to meet and discuss their work with each other;
  • Provide opportunities to learn about the state of treatment access and preparedness on international and regional levels.

Each regional contingent was asked to prepare a report on the state of HIV and HIV treatment preparedness for their respective regions. Summaries of those presentations were given at the conference. The full reports are included in the Appendix of the Final Report.

Summary of Issues and Recommendations

The following provides a description of many of the issues raised by conferees and their recommendations to address them. More detailed descriptions of the discussions and of strategies targeted to move forward are provided in the full report.

  • Securing Treatment - HIV advocates must work to ensure that the commitment made by WHO to provide HIV treatment to 3 million people by 2005 is met. This will require concerted efforts to hold the UN, GFATM and other key partners to their commitments, to compel governments to contribute to and utilize the Global Fund, make high quality and affordable medicines available, to develop the necessary health care infrastructure, and to teach people with HIV and their care providers about how to use treatment effectively. Treatment is not limited to ARV therapy, but must include prophylaxis and treatment for AIDS-related opportunistic infections, tuberculosis, hepatitis and other co-morbidities.

  • Partnership- AIDS is brought on and exacerbated by poverty and inequality. It is fueled by stigma and discrimination. By building effective and strong coalitions and partnerships we can begin to overcome these conditions and create better, healthier lives for all. We must seek to build coalitions with each other, within and outside of our regions, and partner with all other sectors of society including women's organizations, youth groups, harm reduction groups, gay rights groups, trade associations and labor unions, human rights organizations, industry, government, religious organizations, as well as with other emerging movements concerned with globalization, peace and environmental issues.

  • Representation - The demand for involvement of people living with HIV/AIDS (PLWHA) is not mere rhetoric. Without their participation in all aspects of HIV program and policy development, it is not possible to create the programs that will best meet their needs. The value of this input has been proven time and again all over the world since the beginning of the epidemic. Governments should include PLWHAs on their National AIDS Advisory Committees and their Global Fund Country Coordinating Mechanisms (CCMs). Multilaterals should include PLWHAs on all committees. Funders should seek their advice. The process of representation must be transparent. The names of community representatives should be publicly available. Community representatives have a great responsibility. They must communicate regularly with the communities that they represent and put the needs of their communities first. Training and mentoring of new representatives is essential if we expect our advocacy efforts to be effective. Representation on a global level must include people from all regions. Often, advocates from the West and North dominate work at the international level. More diverse and inclusive representation is needed. It is all of our responsibility to ensure that this happens.

  • Advocacy - There is no one correct way or method to be an advocate. Each region, country, and each issue will require its own approach, based on the abilities, resources, culture and needs of the communities involved. We should share our experiences and learn from them without imposing agendas or approaches on each other. We must understand our audiences - the government, industry, the media, the public and our own communities. Advocacy involves work on all levels - from securing adequate and respectful health care for an individual at a clinic, to lobbying government for better services, to ensuring that the pharmaceutical industry provides high quality and affordable medicines, to ensuring that global mechanisms are in place to bring resources to where they are most needed. To be effective, advocacy efforts must target needs on the individual, community, national, regional and global levels. We must also advocate within the realm of AIDS organizations and regional networks to ensure that treatment is a high priority on their agendas. The Summit participants voted unanimously to support the actions of the Treatment Action Campaign of South Africa in its efforts to force the government to develop and implement a National Treatment Plan. Several events were cited as good opportunities for global advocacy (these are described in the report).

  • Treatment literacy - Our policy development must stem from good science. Science is the search for truth and it is our greatest tool. Advocates must learn and understand the science of HIV in order to be effective and develop sound policy. Treatment literacy for both health care providers and people with HIV is essential if we expect treatment to be effective. Information is as important as medicine. Without good treatment education, we cannot effectively manage side effects or expect good adherence to therapy. Treatment literacy for the government and the public is also essential. Knowledge that effective treatments exist will help alleviate the fear and stigma associated with AIDS and encourage people to learn the facts about HIV and to utilize counseling, testing and care. Treatment education programs must be targeted and adapted to meet the cultural and educational needs of the community.

  • Materials - Treatment information materials are needed everywhere. There is no one right type of material. Different communities need different formats. Materials must be culturally sensitive and well targeted for their audience. There are many good materials produced. The difficulty is making them widely available. Several recommendations were offered to address this, including the development of a web-based materials repository, and a staffed e-mail and hotline service. Through these mechanisms, local organizations would be able to pick and choose which materials best suit their needs and adapt them to better serve their communities. Translation remains a big challenge. Written materials are not often the best approach. Films, theatre and other means were suggested as good ways to provide HIV treatment information. It is essential that materials be updated regularly to include the latest and most relevant information. Materials are needed not only for people with HIV, but also for health care personnel.

  • Funding - Community-based funding for treatment preparedness is essential. Funders need to work in collaboration with communities in setting funding priorities and making decisions about who receives it. Funding for service programs must be sustainable. Funding applications and reporting requirements need to be streamlined. Multilateral funders and foundations should consider funding community programs directly rather than funneling money through governments, universities, or international NGOs, which often create proscriptive and directive requirements for the use of funds. Funding processes need to be transparent to reduce corruption. Funders should not prohibit the use of funds for NGO administrative costs if they expect these organizations to develop sound infrastructure and build sustained capacity. All communities in need should be responsible for determining which approaches are best without being stymied by a political agenda stressing one approach over another, e.g. abstinence only or prohibition of harm reduction programs. The development of better information dissemination is needed for funders, advocates and service providers to more directly link funding sources to services.

  • Discrimination - We are over twenty years into the AIDS epidemic and discrimination against people with HIV and those considered at-risk still runs rampant. AIDS stigma not only threatens the lives of those infected, it undermines all attempts to fight the spread of HIV and to provide care for those infected. Advocates must work to overcome discrimination on national, local and individual levels. Particularly important is the need to overcome the discrimination of health care providers towards people with HIV in general, but also toward marginalized groups of people, such as drug users, sex workers and gay men. The media can play an essential role in raising awareness and overcoming stigma. Gender inequality and violence against women furthers the spread of HIV and makes it difficult, if not impossible for women to remain safe and seek out care, treatment and support. Discrimination within our own ranks is unacceptable. All people with and at-risk for HIV need to be included in our advocacy and support efforts. Active drug users and others are often marginalized and excluded from HIV support and we must not allow this.

  • Drug Availability, Quality and Pricing - There are many challenges that require advocacy on both national and global levels, including:

    • The status of national patent legislation;

    • Our negotiating position at the World Trade Organization and other forums concerning intellectual property rights and equitable access to medicines;

    • The status of national essential drug lists;

    • The willingness of governments to "fast-track" registration of AIDS drugs and diagnostics;

    • The capacity of national drug regulatory authorities to carry out quality assurance studies;

    • The acceptance of generic drug products by governments, health care providers, and patients and ensuring the quality of generic products.

    Strategies suggested to address these issues included:

    • For national governments: contact trade, finance, commerce, and health ministries to inform them of issues and demands around key dates;

    • Negotiate with governments and generic manufacturers to make high quality generic products available at lower prices;

    • At the World Health Organization: strengthen, expand and accelerate the pre-qualification project; make dossiers available to local drug regulatory authorities on demand; provide technical assistance to national drug regulatory authorities on quality and drug registration

    • Global Fund to Fight AIDS, Tuberculosis and Malaria: Challenge national procurement policies which will rely solely on WHO pre-qualification after 2005

  • Corruption - Corruption within government and within community-based organizations undermines all efforts to end the HIV epidemic. Corruption not only diverts money from prevention, care and treatment efforts, it undermines the ability to obtain the sustained funding that is essential for AIDS care. Funding processes must be transparent. AIDS advocates have a responsibility to serve as watchdogs to ensure that funding is used properly. Corruption within community-based organizations is deplorable and should be seen as a direct attack on people with AIDS. Those who work for these organizations have a responsibility to their communities that must come before their personal needs. Conversely, community organizations must meet the needs of their staff and volunteers, including the provision of HIV treatment, in order to foster the commitment that will hinder corruption.

  • Communications - One important way to build on the effort from the Summit is to develop and support our communications links. We need to find ways to exchange information, strategies, experiences, and our frustrations. If we expect to ensure more inclusive representation in global advocacy efforts, then communication linkage is essential for information transfer. We should utilize existing networks where possible and build new ones if necessary. When working within existing networks, we need to stress treatment as a high priority issue. The Internet is an important and effective communications tool, but it is not available to all. Newsletters and other means of communications are needed to reach those with no Internet access. Regional meetings to follow-up the Summit were recommended. The Pan African Treatment Access Movement (PATAM) met immediately following the Summit. A follow-up regional meeting was held in Minsk in May. The Asian contingent is currently planning their regional meeting.



Project Description

(Table of Contents)

Background

We are angry. Our people are dying.
Without treatment, the 28 million people living with HIV/AIDS (PLWAs) on our continent today will die predictable and avoidable deaths over the next decade. More than 2 million have died of HIV/AIDS in Africa just this year. This constitutes a crime against humanity. Governments, multilateral institutions, the private sector, and civil society must intervene without delay to prevent a holocaust against the poor. We must ensure access to antiretroviral (ARV) treatment as part of a comprehensive continuum of care for all people with HIV who need it.

--Pan-African HIV/AIDS Treatment Access Movement: Declaration of Action, 25 August 2002

A critical element to be able to deliver treatment to people will be treatment literacy programmes. Everyday in our communities we are able to educate people in workshops about Nevirapine, about AZT and about side effects. We are able to sing songs about these drugs; we are able to educate people about fluconazole and clotrimoxazole. These are things that none of us knew, medical terms and pharmacological names that none of us knew when we were first diagnosed or even much later. But fighting for our lives has made it essential and necessary for us to learn these things. Everyone can learn them. In our communities we have done workshops with people who have never opened a pharmacological textbook but most of our people can speak eloquently and articulately about the medicines that they need to take for their side effects and how to look after themselves.
--Message from Zackie Achmat -- Treatment Action Campaign (South Africa) to the 14th International AIDS Conference -- Barcelona, 11 July 2002

For most of the past two decades of the AIDS epidemic, political and public health leaders never really gave much thought to treating the millions of people infected with HIV in developing countries even after therapies became available that clearly extended the health and lives of those who took them. Most of these millions were too poor and the drugs were too expensive. Instead, the world community rallied around the hope for an AIDS vaccine to prevent new infections, essentially writing off the deaths of millions as a sad reality. But as the HIV+ South African High Court Judge Edwin Cameron said in his speech to the International AIDS Conference in Durban in 2000:

We don't accept 'sad realities' in South Africa. If we accepted what others told us were sad realities, we would still have had a racist oligarchy oppressing our people. We would have had indescribable chaos and bloodshed. We have shown through our history that we will confront those 'sad realities,' and we will change them.

It turns out that South Africans are not alone in rejecting "sad realities." People with AIDS from all over Africa--from Nigeria to Ethiopia, from Zimbabwe to Morocco; from all over Asia and the Pacific--from India to Malaysia, from Australia to Thailand; from all over Eastern Europe and Central Asia--from Poland to Russia, from Kazakhstan to Ukraine; from South and Latin America--from Chile to Costa Rica, from Brazil to Mexico; from all over North America and Western Europe--from the USA to the UK, from Canada to Italy, reject the premise that AIDS treatment is only for those who can purchase their health or for those who have the good fortune to live in countries where their governments currently provide these medications.

Led by advocates for people with AIDS around the world and international humanitarian organizations, there has been a global call to drastically reduce the prices of these expensive drugs, and to allow the manufacture and importation of cheaper generic copies of the medications. And while prices from industry are not yet at the level that makes them affordable to many countries, many people are now pondering the impossible and beginning to think about how to roll-out antiretroviral therapy (ARV) in the South. How do you procure these drugs in bulk? How do you distribute them? How do you build the health care infrastructure in those places that need additional resources in order to deliver these drugs to patients? How do you train doctors and other health care providers in the exquisite detail of treating HIV/AIDS? How do you medically manage ART in resource-poor settings? No one would have dared to move beyond a theoretical consideration of these questions when Justice Cameron made this speech over two years ago. In fact, the World Health Organization (WHO) has now listed antiretroviral drugs on its roster of essential medicines, developed a set of guidelines for scaling-up ART, and set a goal of treating three million people with ART by 2005. Pilot ART programs are proliferating around the world and some regions, particularly, West Africa, have made commitments to substantially scale up therapy to hundreds of thousands of people with AIDS. Additionally, the Global Fund to Fight AIDS, Tuberculosis and Malaria (GFATM) and the World Bank have made substantial funds available to countries that want to scale-up ART.

The role of people with AIDS and their advocates in creating the current climate where the impossible has become possible is indisputable. These same advocates also realize that their job isn't simply to advocate in their communities and countries for AIDS treatment, but to help prepare their communities for the advent of these programs. Many advocacy groups, from the Treatment Action Campaign in South Africa, to the Journalists Against AIDS in Nigeria, to the Thai Network of People with AIDS, the European AIDS Treatment Group in Western and Eastern Europe, Grupo Pela Vidda in Brazil, and Vivo Positivo in Chile, have embarked on treatment literacy efforts to teach their communities about the fundamentals of HIV disease, from its pathogenesis to its treatment, about the opportunistic infections that kill people with AIDS, about adherence and its importance in avoiding drug resistance.

As Zackie Achmat from the Treatment Action Campaign has said: "fighting for our lives has made it essential and necessary for us to learn these things." Yet, advocates' efforts in this area are supported by scientific evidence that confirms the importance of health literacy in maintaining the well-being of people with AIDS. According to a recent study in the US, about 1 of 4 people living with AIDS had difficulty comprehending simple medical instructions and therefore had lower health literacy. HIV-infected people with lower health literacy had lower CD4 cell counts, higher viral loads, were less likely to be taking antiretroviral medications, reported a greater number of hospitalizations, and reported poorer health than those with higher health literacy. In addition, after adjusting for years of formal education, lower health literacy was associated with poorer knowledge of one's HIV-related health status, poorer AIDS-related disease and treatment knowledge, and more negative health care perceptions and experiences. The authors of the study concluded that health literacy is a significant factor in the health and treatment of persons living with HIV/AIDS.

Project History

At the International AIDS Conference in Barcelona in July 2002, a group of over two dozen advocates from around the world gathered to discuss how to boost efforts on treatment advocacy and education, which they newly dubbed "treatment preparedness." Those in attendance at the meeting in Barcelona called for a global summit on treatment preparedness to bring together advocates and educators from every continent to assess our needs and develop strategic plans for moving forward. Following the meeting in Barcelona, an ad hoc working group representing 180 advocates from every continent was formed to prepare for the summit. The International HIV Treatment Preparedness (ITP) Working Group, communicating via conference call and email for the last six months, planned the Summit. The Treatment Action Campaign in South Africa and Gay Men's Health Crisis in New York provided primary logistical support. Five regions were defined, and the Working Group was made up of representatives from each region. The regions were defined as:

  • Eastern Europe and the Newly Independent States of the Former Soviet Union/Central Asia;
  • Africa;
  • United States, Canada, Western Europe; Australia, New Zealand and Japan
  • Latin America and the Caribbean;
  • Asia-Pacific (East Asia and Pacific, South and Southeast Asia)

In organizing the Summit, the primary goals were to:

  • Provide the first chance for many people working on treatment preparedness around the world to meet and discuss their work with each other.
  • Provide opportunities to learn about the state of treatment access and preparedness on international and regional levels.
  • Develop a framework for the creation, maintenance and enhancement of local and regional treatment preparedness efforts around the world;
  • Provide an opportunity for advocates to begin crafting a template for approaching foundations, national governments, and international organizations to directly support local and regional efforts for education and advocacy in the developing world;

The meeting brought together 125 people from 67 countries. The participant list for the summit was developed through an application process, which involved regional selection and nominating subcommittees. The Working Group developed the application and disseminated it utilizing organizational lists and databases in each region. The regional subcommittees were each responsible for disseminating the application, reviewing applications and selecting their regional participants. (The participants of each regional sub-committee are included in the Appendix of this Report).

A set percentage of participants from each region was determined based on the gravity of the epidemic there. In this way, diversity was ensured and no one region dominated. The conference paid all expenses for participants to attend the Summit, though some participants who chose to paid their own way. It was also agreed that only those applicants selected could attend the meeting. We did not want additional people attending at their own expense and, thus, skewing the regional representation. This representational structure was completely developed by community members and, to our knowledge, was a truly unique approach. The percentages were set as follows:

  • Africa - 30%
  • United States, Canada, Western Europe, Australia, New Zealand and Japan - 15%
  • Latin America and the Caribbean - 15%,
  • Asia-Pacific (East Asia and Pacific, South and Southeast Asia) - 25%,
  • Eastern Europe and the States of the Former Soviet Union/Central Asia - 15%

Regional Reports

Regional representatives were asked to work together as a group and prepare a report for the Summit that provided an overview of HIV in their region and information about the following:

  • What is the state of treatment availability in the country/region?
  • Description of current treatment advocacy efforts in country/region.
  • Description of current treatment education efforts in country/region.

The reports were based on an extensive questionnaire developed by the Working Group. Answers were compiled using data from WHO, the World Bank and the Joint United Nations Program on HIV/AIDS (UNAIDS) and de novo research by five regional documentation subcommittees of the ITP working group. Participants from each region presented a summary of their findings on the first day of the meeting. The full reports are provided in the Appendix of this Report.

Agenda Description

The meeting was structured to ensure that most of the time was spent in discussion. Presentations were limited to the first day. The remainder of the meeting was primarily spent in break-out groups. Report-back sessions allowed participants to share the results of their smaller group discussions. Two additional sessions were held to allow participants to meet with funders and with representatives of the GFATM. Descriptions of the sessions are provided later in this report along with the summaries of those discussions.



Summary of Meeting Presentations

(Table of Contents)

Opening Plenary

Zackie Achmat

Treatment Action Campaign, South Africa

Our biggest task is ahead of us. We have made tremendous progress. Five years ago, no one in South Africa knew that treatment existed. Activists thought that it was impossible to challenge the drug industry, international bureaucracies, etc. Today we know that we can bring down prices, get funding, and most important - understand the possibility of treatment and what it can do for PWAs. WHO has taken bold steps - it has said that without health there can be no development and it has said that ARV is needed and necessary for all PWAs. This came about due to HIV activists around the world.
How can we work together in a global movement to ensure that progress continues? What is the framework for us as we continue?

  • First, we must understand that HIV is a political issue. It is about the politics of inequality between countries, gender, sexual orientation, race within countries, and the inequality of poverty.

  • In developing a global movement, our most important ally is a strong faith in science. We must create scientific literacy even in the poorest communities. A treatment access movement must be based on good science - the search for truth.

  • The next component is grassroots mobilization - organize the poorest communities. Ignore the distinctions between NGO and government - find allies everywhere. Work with churches, labor unions, gay orgs, and women's organizations. We have to address the broader struggle to address other conditions of poverty and link HIV with those issues. Find a balance between the HIV specific issues and broader issues.

  • Create a global movement to make sure that international organizations are held accountable to their promises.

  • Information transfer - we can learn from the work that has been done in US and Europe, but we need to create our own approaches to make everyone an expert. Different approaches will work in different places. We need to use the best and multiple forms of communications to advance our work. Use e-mail. Use paper. Use everything.

  • Tradition - in South Africa, there is a tradition of struggle. Use the local political traditions for organizing and getting out your treatment messages.

  • Media - create a moral consensus on the right to health and life. It is essential to develop these relationships. Do not exaggerate. Keep your facts straight. Be professional. Create your own media. Understand the obstacles to treatment, including the need for good health care infrastructure.

  • Use the legal system, governance and human rights, etc. Every country has a legal system. Become aware of your rights. If there are newly created institutions that have new legal functions - use them. Provide those processes with information. Activists must understand the institutions of government in order to use them and advocate within them.

  • Internationalism is essential. A global approach has brought about the enormous changes in international bureaucracy and policy. Use regional networks. It is sharing experiences, knowledge and then adapting this to our local conditions. We share in our campaign for more funds. But, we use approaches that work best for our local conditions. But there are problems with internationalism - more powerful countries/groups can impose their viewpoints. Manage imperialism - our own imperialism - and do not impose your worldview on others. Local people should control their destinies and not act as beggars.

  • Tactics - We need to be fearless in defending our principles - the right to life, healthcare as a right. We must be cautious about our tactics, especially in smaller and poorer countries. We need, sometimes, to be conservative in order to build our movement. More radical action can sometimes be counterproductive. Where we are weaker, we must be more cautious as we build movements.

 

Vladimir Zhovtyak

All-Ukrainian Network of People Living with HIV, Ukraine

(Table of Contents)

Today, in Ukraine, 50 people have access to ART, but 5000 people need it now. Founded in May 2001, the All-Ukrainian Network of PWHIV stated that there are problems and sought to be acknowledged as a partner in the nation's response to HIV. They applied to international organizations for advocacy training. They defined key stakeholders and institutions and began to work with them. To understand the process that the Network has undertaken, one needs to be familiar with post-Soviet system, described as slow and corrupt. Network members started contacting government officials, met with them, held press conferences. In 2001, they met with the Minister of Health at a conference and asked for treatment, but received no answer. Later, at a press conference, the Minister again would not answer questions about treatment. In five months time, a letter-writing campaign began demanding treatment for people with AIDS and a more pro-active overall governmental response to HIV. The government began to take the group seriously and include them in meetings and planning. They provided key input in the country's Global Fund applications, which includes 60% of funds for treatment. They took part in a UN initiative to reduce drug prices and industry responded by reducing prices. Ukraine is only the second country in Europe where this has happened. But, drugs were not purchased on large scale. The Network attracted the attention of international organizations and got a grant for $50,000 to purchase of ARV for people without access through governmental programs. They work with the private sector, state government, and international organizations. They provide people with AIDS with training for advocacy and education. Their goal is to make ARV treatment available to all who need it in 2 - 3 years time.

Carlos Garcia de Léon Moreno

Ave de Mexico, Mexico

(Table of Contents)

In Spanish, there are many definitions of advocacy. We use many words to explain it, including negotiation, defense, promotion, and political influence. For our work at this meeting, it means to influence individuals and institutions to increase access to treatment. We need to plan our advocacy strategically, recognize our strengths and weaknesses, and exchange information. Our primary goal is universal access to treatment, but, as we work toward that goal, our objectives must be realistic, reachable and measurable. The better we are able to plan our advocacy strategies, the more efficient we will be in getting what we want. We need to learn more about how to plan strategically. In our region, our goal is make high quality treatment available for all who need it. We must document and record our experiences, discuss our successes and failures. Build our alliances. Be clear to the public about our goals - target populations for strategically planned advocacy efforts are not only people with HIV, but government, media and others - key actors who need to understand our goals. We must work in partnership to reach them. Advocacy must be tailored to the needs and structures of each country. What works in the US may not be appropriate in Mexico. This means that we have to work in our own context, using, of course, other experiences, but adapting them to our scenarios. Knowledge about treatment must be brought to communities who need it. What do we want - quantity or quality of treatment? Quality is important. Community must be knowledgeable and provide input into how to meet their needs and prioritize their needs. Treatment information is part of a long-term strategy. That is why communities need to develop skills to understand treatment issues and be able and ready to discuss them. Knowledge gives power, and empowerment is a very important need of the communities. To advocate with an empowered community means that knowledge and skills should be developed in those communities to target our goals.

 

Kevin Moody

Health Access International, the Netherlands

(Table of Contents)

(Presentation in Appendix)

The goal of our advocacy is to meet our health and social care needs, including both prevention and treatment. Advocacy can be "passive" and "active", formal and in-formal, rights-based or evidence-based. Examples include:

  • Treatment (care) programmes
  • Street demonstrations
  • Research projects
  • Email campaigns
  • Lobbying / letter-writing
  • Exhibitions
  • Most effective: combination of all types embedded within a programme with clearly stated outcomes

Treatment literacy is needed to not only to provide people with necessary information about their disease and how to treat it, but to support and inform our advocacy efforts. We need information to support our arguments and counter opponent's arguments. Treatment literacy is a powerful tool in advocacy work. ARV is only one component of treatment needs that must be combined with basic healthcare and other services. Care must be optimal. Access to information tells us that generics are not "counterfeits", monotherapy is not appropriate, and that complimentary medicine must be used with information to avoid wasting resources.

Education formats are there but have limitations. Most educational tools are passive and utilize a lecture format. Lectures have limited value. Training is often "teacher-centered" (teacher decides what you need to know). How can we better turn information dissemination into practice? Multiple training methods should be utilized. Training should be collaborative and problem-based. Add active components in training. We need to build strong civil societies and community organizations.

Sipho Mthathi

Treatment Action Campaign, South Africa

(Table of Contents)

HIV highlights deeply embedded inequality in our national and global society. TAC's campaign is founded on internationally recognized and constitutionally affirmed right of all to life, to dignity, to access to health care and to treatment. We have a right to participate in policy making to ensure that our needs are addressed.

Our challenge is getting people involved and into the streets. People know that treatment exists but that they cannot get access to it because of inequality. We need to counter arguments against providing treatment because of lack of infrastructure. We need to establish community understanding that treatment is a right and explain the foundations for that right. South Africa can be a world model. The resources and infrastructure exist to provide care. The legal infrastructure exists. There is a strong civil society. The problem is lack of political will.

TAC Participates through -

  • Submissions to parliament - politicians do not always see the point, we have to point things out to them all the time
  • Research - to highlight good models and successful ways to implement programs
  • Demonstrations, pickets, marches
  • Legal action, media campaigns
  • Community education and mobilization forms the foundation of TAC's work

Treatment is not only the drugs, but also the knowledge about how treatments work and why people have a right to it. People need to have information to counter the arguments against providing care. Treatment literacy is a vehicle through which successful advocacy is carried out. It can be the subject of advocacy - as treatment must be provided to save lives, treatment education must become part of a treatment package and we must advocate for it.

TAC's treatment literacy program includes:

  • Media - Community Radio programs, newspaper publications in community and national media;
  • Posters - containing treatment information are put up at health centers, at schools, community centers and other public places;
  • Stories of people living with HIV: A series of posters detailing stories and experiences of people with HIV are used for education in communities to help communities come to terms with own experience of HIV;
  • Treatment Information pamphlets;
  • Treatment education workshops - PWAs, care givers, youth, workers: Scientific, legal, economic, political literacy

Some of our challenges include:

  • Unsupportive political context
  • Making materials accessible
  • Finding new techniques to reach different communities with different skills levels
  • Sustaining work - avoiding activist burn out
  • Coping with demand for treatment education -

The needs are great. We do not have enough people and financial resources to do the work. But, community education must happen. We could not have gotten 15,000 people to March to Parliament on 14th February to demand treatment without making people understand what treatment is. The struggle must go on!

 

Paisan Suwannawong

Thai AIDS Treatment Action Group, Thailand

(Table of Contents)

If you told me five years ago that soon my government would be providing free access to ARV therapy for tens of thousands of people, I would have laughed at you. But, today I am glad to say that we have gotten that commitment. And I can tell you that our government would never have taken the steps to provide universal access to ARV if people living with HIV/AIDS did not advocate for our rights.

I am here to talk about treatment education and advocacy from my own experience and perspective. I would say that the key meaning of education and advocacy is that people with HIV/AIDS ourselves are part of the definition. We are the ones who are living with HIV and therefore no one else can honestly represent our experiences or feelings.

One thing I realized about treatment education is that it is under our control; it is not only the responsibility or capacity of doctors to treat us. We can and must learn how to live with our disease, deal with our treatment, and not leave our lives only in the hands of our doctors.

For example, not long ago in Thailand, many people were dying of PCP because doctors did not recognize it or treat us for it. Our PLWHA network implemented a campaign to screen and treat PCP, called the "100% Cotrimoxazole" campaign, because we knew it was so simple to treat. We learned and taught each other how to identify symptoms, take the medication, advocate in the health care system, adhere to the treatments and now we use this successful experiment as a model for the prevention and treatment of other opportunistic infections, and also for ART.

This showed the medical establishment and others that PLWHA can do an equal or better job than doctors, when we take control. Treatment education is not only about science or pills or the virus. It is about understanding the underlying factors of our access to information and treatment.

So, what moved us in Thailand from knowledge about treatment into action? About five years ago in my country, there was no clear policy on how to treat PLWHA. We had treatment guidelines, but few doctors were motivated to treat us. They thought it was a waste to spend money on people with an incurable disease. The PLWHA community was sick of watching our family and friends die, and we were hearing about the benefits of treatment on PLWHA in rich countries. We learned that some major barriers to our own access to treatment were related to our government's policies, including its relationship to those rich countries. The barriers were related to international trade policies. We made these issues a focus of our education and a priority on our PLWHA network's agenda. Again, we saw treatment advocacy as a matter to our right to live.

For me, treatment advocacy was about the process of researching and educating ourselves on those issues, so we could develop a clear message, identify our targets, strategize, and take public action to address those issues and involve the larger society.

For example, the first time PLWHA came out in public to demand our rights was around a treatment access issue. Two hundred of us stood in front of our Ministry of Public Health to demand that the government use a compulsory license for ddI. This was very difficult, to stand as PLWHA in our hierarchical and discriminatory society, to make a demand of our government, because we were always told that being HIV positive was our own fault - and therefore, we deserved nothing. However, the experience of that demonstration showed us that, in fact, people respected our demand and action for the right to health care. Many things improved after that, including our government's attitude toward us and the momentum of our movement.

One more example to demonstrate the critical need for PLWHA involvement in the treatment advocacy opportunities is my experience on the Global Fund's Country Coordinating Mechanism. If I was not at one of the earliest meeting of the CCM, Thailand may have never submitted a proposal in the first round at all. One government representative was more concerned with his own political image than the benefits to Thai PLWHA, because he was also on the Board of the Global Fund. He thought it might "look bad" to submit a proposal in the first round.

In conclusion, I would like to say that the key to successful treatment education and advocacy is remembering our own dignity as human beings and taking hold of the power of that truth. Taking care of our feelings is as important as understanding and treatment of the physical manifestations of this disease. I would like us to remember that we are our own cure, that we use our voices to educate and advocate, and that we will realize our goals.

Last year, the Thai government provided ARV therapy to 3,000 people. This year, it is 20,000 people, and by the end of next year, it will be 50,000. I would like us to not stop remembering our dignity until every person living with HIV has treatment, and that we realize we are the real solution and take that power to fight for our rights.

Group Discussion

(Table of Contents)

  • The need for advocacy and education on both macro and micro levels was emphasized. There is a need to get government and industry to respond to the overall epidemic. But, equally important is the need to teach PWAs about symptom recognition and treatment options and teach people to advocate for their needs on an individual level within health care systems. Knowledgeable patients change the perceptions of and relationships with health care providers. Many people discussed the importance of knowledgeable leaders in the community and their impact in advocating within health care systems. While many treatment advocates tend to focus on broader issues, these issues of advocating for patient needs on an individual basis emerged as a key priority for many people. It is an important component of treatment education and is the point where education and advocacy merge.
  • A number of questions and comments were made about the difficulties of dealing with religious leaders. People acknowledged their importance in their communities, but found that many religious leaders either refused to discuss AIDS or were very judgmental in their viewpoints and, therefore, increased stigma and fear amongst their congregations. Sipho Mthathi said that she frequently will ask religious leaders about how they justify burying their community members every week without taking on AIDS as an important issue. Another commenter said that it was helpful to find common ground and suggested that, while there may be reluctance to discuss sexual behaviors, many religious leaders are more open to discuss care and treatment needs.
  • How do we reduce stigma and discrimination in treatment delivery, especially where there are limited resources? Examples of success in this area include Thailand, where there are no social criteria for who gets treatment, only medical criteria. And in Mexico, gay men were not being given treatment even though they were the largest group of patients. Through advocacy, this was changed.

Representation of Drug Users and Other Marginalized Groups in HIV Treatment Advocacy

(Table of Contents)

Several conference participants met during the meeting to discuss the poor representation of drug users, sex workers and other marginalized groups within HIV treatment advocacy organizations and to stress the importance of issues affecting these groups in the treatment preparedness agenda. The following Statement from this group was adopted by the Conferees.

  1. Organizers of a next meeting or summit on treatment advocacy should proactively seek out representation and participation from underrepresented groups, such as active drug users, sex workers, and transgendered people and African gay men.

  2. We should acknowledge and address the existence of discrimination within the PLWHA and larger AIDS advocacy community, specifically around populations, including injecting drug users and sex workers.

  3. We demand the Global Fund to take action in its review process to either:
    • Put pressure to recipient countries to implement substitution (maintenance) programs and harm reduction policies to provide a supportive environment for IDUs to access services and ARV and to maximize treatment's outcome. Methadone should be added to the list of essential medicines and considered a component of HIV care.

    • Put pressure to recipient countries to remove any repressive laws that violate human rights [of IDUs],

    • Put pressure to recipient countries to recognize that being an active drug users is not a valid criteria for denying an individual access to treatment and care

  4. There should be better and stronger linkages between HIV/AIDS advocacy and harm reduction and drug users' groups and this should be supported by existing drug users' advocacy organizations and network

  5. Hepatitis C should be considered as a key issue in treatment education and care among IDU, as should access to medications for treating hepatitis C. Other issues, including ARV use with substitution medications interaction and information on interactions between recreational drugs and ARV should be researched and disseminated

  6. When we discuss injecting drug users' needs in the context of AIDS, we must also consider IDU partners, families and their children, and issues relating to them.

  7. We want the International AIDS Conference in Thailand to take on issues of drug use and commercial sex work in the context of the AIDS epidemic as a priority.

Break-out Session One: Defining Treatment Preparedness

(Table of Contents)

Participants met inter-regionally. Below are the questions the groups were asked to discuss, followed by a summary from those discussions:

  • dentifying treatment literacy needs, obstacles, and models:
    • Why is treatment education for people with HIV important?
    • What are the components of treatment education for PWHA?
    • What is needed to provide effective peer-based treatment education for people with HIV?
    • What are the obstacles and challenges in providing effective treatment education?
    • What are the models and ideas for overcoming obstacles and providing treatment education?

  • Identifying treatment advocacy needs, obstacles, and models:
    • How do we define treatment advocacy?
    • What are the issues that concern treatment advocates?
    • What are the obstacles we face in building and maintaining our advocacy efforts?
    • What are the effective models for treatment advocacy on international, national and local levels?

Summary of Discussion

Why is treatment literacy important?

  • It is important for people considering treatment to understand how ARV therapy works, what the side effects may be and how to recognize them, which pills to take and when to take them, the need for good adherence to medication, etc. Without this information, patients cannot make informed decisions about treatment and will not understand why good treatment adherence is essential to effective therapy. Treatment may provide hope to people, but it is still frightening. Treatment information reduces that fear and stress.
  • HIV treatment is not limited to ARV therapy. Prophylaxis and treatment of AIDS-related opportunistic infections, tuberculosis, hepatitis and other co-morbidities is an essential and life-saving component of AIDS care. Treatment education programs must include information about the signs and symptoms of OI's, the ways to prevent OI's and the treatment for them.
  • Treatment education supports advocacy. Advocates need an in-depth understanding of HIV pathogenesis, transmission, and treatment, clinical research, drug development and health care systems in order to develop and advocate for effective policies that meet the needs of people with AIDS.
  • Information about HIV treatment helps to reduce HIV-related stigma within communities. When HIV is seen as a treatable illness, people are less frightened of it, more apt to learn about HIV and less afraid of those who are infected.
  • The knowledge that treatment for HIV exists provides hope for people and encouragement to learn their sero-status and seek out care. This not only can improve the health of individuals, but also can also further prevention education efforts.
  • Doctors may not provide real or full options and information for patients. Patients often are given misinformation about treatments. Quackery is commonplace and can cause great hardship and expense for people without the tools to adequately assess whether so-called cures for AIDS are legitimate. Patients need to be able to make informed decisions.

What are the components of good treatment literacy approaches?

  • Treatment education programs need to be decentralized and developed by the communities in which they will be utilized. Peer-based programs allow people to put their experiences to work. Peers are often better able to meet people "where they are" without being condescending. Patients may often be more comfortable raising questions and concerns with peer educators.
  • Treatment education includes a continuum from affected communities to health care providers (doctors & nurses), community leaders, media, and policy-makers. Translation into media which can reach rural communities, appropriate to different technology and literacy levels, and into people's native languages is also critical, but resources are lacking, and some languages lack terms and concepts which must be developed to explain HIV/AIDS and its treatment.
  • It is difficult but necessary to translate medical and scientific language into terms that lay people can understand. There are ample examples where this has been done effectively.
  • A variety of formats should be utilized. One size does not fit all. Alternative formats, e.g. use of theater, should be used. Materials must be culturally sensitive. The Internet can provide access to good and up-to-date information that then needs to be tailored to meet the needs of specific communities.
  • Health care providers should be seen as partners in treatment literacy efforts. Peer-based programs should be instituted within health care settings, not apart from them. Other sectors can be included in efforts to provide treatment information to the public, including employers, media, and a wide variety of government branches.
  • Peer-based support groups and counseling to support adherence was recommended.
  • The development of a repository and/or distribution service for best practices and treatment education materials was recommended.
  • People need a sense of security in training and work. Peer-educators need good training and on-going supervision. They need to get paid for their work. Not every person will make a good educator or advocate. People have different skills, talents.
  • People should not be stigmatized for deciding not to take ARV therapy.

Obstacles to good treatment literacy:

  • Gender inequality was raised repeatedly as an obstacle to health care, treatment, treatment education and support services.
  • Discrimination and poor attitude towards people with HIV by health care providers was also repeatedly raised as a barrier to good treatment.
  • Limited funding opportunities for community-based treatment education programs was cited along with the need to often cut out "middlemen" (often government) that take a cut from funding without providing added benefit.
  • Lack of infectious disease doctors and other skilled health care workers means that patients are not given accurate or any information about HIV care and treatment. Health care workers often overstress confidentiality concerns and will not refer patients for other needed services, e.g. drug treatment.
  • Government officials and health care administrators will argue against dissemination of treatment information, arguing that treatment itself is not widely available and that information will raise false expectations.
  • It is difficult to get up-to-date information in easy-to-read formats.
  • The biggest obstacles remain a lack of affordable and available treatment.

What are the issues and goals of treatment advocacy?

  • The highest priority is the availability of affordable, high-quality treatment for HIV disease. This includes not only ARV therapy, but diagnostic tests, OI treatment and prophylaxis and support services, including drug treatment services.
  • The representation of people living with HIV on government bodies, funding panels and within community and international organizations needs to be strengthened. There was great concern that even when PWAs are included in policy and program development, their input is not taken seriously. This is a particular concern with the GFATM Country Coordinating Mechanisms (CCMs). Representation of PWAs needs to be supported through training and mentoring. PWA representatives have a responsibility to report on their activities to the communities they represent.
  • There is also concern that community representation on international bodies is often done by a relatively small group of individuals, with too large a percentage of representatives coming from the North and West. Representation from all regions is needed. Representation needs to be diverse and inclusive of all communities affected by HIV. There was significant discussion about the problems of exclusion of marginalized groups within our own organizations, including drug users and sex workers, among others.
  • Advocates discussed the continued need to push for governmental response to HIV. Treatment is not a high priority for many governments. Advocacy to ensure that treatment availability is part of all government's response to HIV is needed. Health care and HIV treatment needs to be acknowledged as a human right.
  • As international funding becomes available through the GFATM and other mechanisms, it is crucial for patient advocates to be actively involved in both the planning for the use of these funds and as watchdogs to ensure that funds are being spent as planned.
  • There is great concern within government and communities about the quality of generics drugs. Drugs must be of high quality. Quality assurance must be monitored and credible results provided to governments, health care providers and community members. The WHO pre-qualification program for generic medications is an important step toward this goal.
  • Discrimination and stigma remain an important concern. Discrimination and fear of discrimination keep people from learning their sero-status and seeking care. Discrimination within health care systems is also rampant and keeps discriminated groups from receiving the care and treatment they deserve. Gay men, drug users and sex workers are particularly vulnerable to discriminatory practices. Discrimination also occurs within our own organizations and many individuals are marginalized.
  • There is great concern about corruption in government and the effect it is having on funding for HIV treatment. The international support that is now being directed to HIV will only be sustained if concrete results can be shown. Government corruption threatens to undermine the success of these programs. National taxes placed on pharmaceutical products also undermine efforts to provide treatment. These should be eliminated.
  • The accountability of NGOs is also an important concern. NGOs are receiving much-needed funds to provide care, service, advocacy and education. But, the services are not there and the funds are being diverted, often for the personal gain of those within the organizations.
  • Advocates need to be involved in priority setting to ensure fair and equitable distribution of limited supplies of drugs. Treatment programs will scale up, but it will take time for these programs to grow. How will fair decisions be made to determine who gets treatment first?

What strategies are useful for treatment advocacy?

  • Appropriate strategies will vary. Approaches will differ depending on many factors, including the political situation, the stage and size of the epidemic, the make-up of the at-risk populations, the substantive needs of those infected, etc. It is important for advocates to understand their audience, be it the government, the media, the general public, or people with HIV. Strategies must be tailored to best address that audience and to best accomplish the particular goal.
  • Advocacy includes policy development. Policy should be science- and evidence-based, developed to meet the needs of those living with HIV and to keep HIV from spreading. Advocates must do their homework - they need to understand the science of HIV and treatment, stay up-to-date, and engage in sophisticated analysis to develop the best possible plans for their communities, countries, regions and the world.
  • The media play a crucial role in educating the public about HIV risk and treatment and in carrying the advocates' messages to the public, government and industry. Advocates need to be savvy in their use of the media and see it as an important tool.
  • Legal forums have proven very successful in moving forward the advocacy agenda. The conferees heard numerous examples from South Africa, Costa Rica and other countries of successes utilizing the legal framework. Advocates need to understand the legal system and determine how it can used effectively to further their agenda.
  • Advocacy and activism must be multi-leveled. Most often, a variety of tactics and strategies will be necessary to reach our goals. Strategies should be based on realistic views of what can be accomplished in that place at that time. Advocates need to determine which strategies will most help to make real change, as opposed to which strategies may "feel" the best.
  • It is essential to build strong and broad coalitions. Labor and trade unions, religious organizations, health care providers, youth groups and others are important allies. We need to find the common ground with these groups and show them why they need to be concerned about HIV. There are many social, political and health issues that require attention and which cause pain and suffering. HIV is not the only one. Many of the conditions that fuel the HIV epidemic also fuel other health and social crises. AIDS advocates should find the links between these issues and work together with all involved to further an agenda of social justice, economic equality and public health.

Topic Break-Out Sessions

(Table of Contents)

This set of six break-out sessions was devoted to systemic issues. Each participant chose two sessions to attend. The sessions were designated as followed:

Funding

(Table of Contents)

How can community advocates and educators influence funding priorities? How do funding priorities get set within and across regions? What do advocates and educators need in order to gain better access to funding streams? What are our concerns as funding flows from west to east and north to south?

Summary of Discussion

  • Community advocates and service providers need to be more directly involved in establishing funding priorities and making funding decisions. Better and more direct opportunities to interact with funders are needed in order to further communicate our needs and ideas. The Summit provides a good model. The development of community and/or regional funding panels to assist in these efforts was recommended.
  • Information dissemination is desperately needed to provide funders with more information about which organizations are providing the kinds of programs in the regions in which they want to fund. And, community organizations need information about which funders are interested in the types of work they conduct and the region in which they work. A web site to provide this information was recommended.
  • There is competition over priorities for AIDS funding. Treatment is still not a priority for many funders and prevention work is often funded over treatment access. Participants reported success in helping to shift or broaden priorities through their meeting with funders and, when necessary, demonstrating to influence government plans.
  • Funding decisions by government, multi-nationals and foundations often still do not include the input of PLWHA. We need to be directly involved in each instance. The process should be transparent. Often, we are told that there have been patient advocates involved in planning processes, but it is difficult to find out who was actually involved and whether their input was utilized. Funders can also assist when funding programs through government by pressuring government to include community participation and take it seriously. The participation of community advocates in the GFATM CCMs was repeatedly raised as problematic.
  • It is important for community advocates and providers to have a sophisticated understanding of how the funding process works. Advocates must recognize the differences in process, priorities, and interests for each potential funder;
  • Community advocates need to be clear about their priorities. There is a need to balance priorities between seeking funding for one's organization and advocating for funding for the community overall or the country or region.
  • Multi-lateral funders should increase opportunities for funding directly to community organizations, bypassing government.
  • Funders are always looking for success stories. It is important to be able to show that funds are being used well and that the funded programs are making a difference. This is not only important to assist community groups seeking funds, but also helps funders as they seek to steer money from governments, multi-nationals, and foundations.
  • Advocates from developed nations need to continue to push for HIV treatment funding and policies that promote affordable treatment.
  • Sustained funding is needed. The difficult work of creating new programs and services often goes to waste because funding is not sustained, even when there is clear evidence of success. Providers are at the mercy of the whim of funders, who change priorities and foci without warning. We need more assistance to build organizational capacity to sustain and grow our programs.
  • Unstable or repressive governments in some countries keep funders away. Whatever the political difficulties may be, the needs of people with AIDS and NGOs that advocate and care for them are still great and are in need of funding. In Argentina, for example, there is no Global Fund support because IMF is prohibiting external money coming into the country. Other funding sources are limited. Belarus was also cited as an example where the political situation inhibits funders.
  • Corruption in government and, unfortunately, within some community organizations keeps money from the service programs that need it. There was great frustration about both corruption and the failure of some CBOs to provide the services they have been paid to provide.
  • The Global Fund has reviewed and accepted applications, but the money is still not there. Despite promises, we are still waiting and people are still dying unnecessarily.
  • Funding from multi-nationals often goes through government, which can use it for purposes other than HIV care and treatment. The government also keeps high percentages of funds received for administrative purposes.
  • The paperwork process should be streamlined. The amount of paperwork to both apply for and report on grants is too burdensome and often unnecessary. Grantmaking guidelines are proscriptive and do not always reflect our needs or approaches that can meet our needs.
  • It feels like the funders do not trust our expertise to know what can work best in our communities.
  • Program evaluation is not well planned. Both providers and funders need to know if their programs are working.

Communications/Materials repository and dissemination

(Table of Contents)

How can we use existing networks and/or create new ones to communicate with each other, discuss strategies, and disseminate information? How can we strategize effectively on global issues and ensure that priorities and goals are set collaboratively? How can we share treatment educations materials? How do we meet our translation needs? How do we keep materials current and up-to-date? What formats are best for treatment education region-to-region?

Summary of Discussion

  • Most regions are moving from awareness messages to technical information.
  • Health care providers lack and need information that is updated regularly.
  • There is no one central place to obtain materials within the regions.
  • Funding is a major obstacle
  • In India, a training manual was developed in collaboration with UNICEF. Many HIV+ people need materials in Hindi, some cannot read and need visuals and pictorial materials. People are often isolated, living in rural areas. They are hard to reach. One way to address this is through schools. Another is by showing films. Translation is a huge challenge. There are six languages to deal with in India alone.
  • In Romania, participants discussed that it is easier to explain how to manage OIs etc. The harder task is explaining the immune system and ART.
  • In Tanzania, there is much on AIDS awareness using traditional performance, festivals. They visit the beaches and give out booklets. There is little on treatment. There is a Mexican booklet for MSM, very underground, not sure that all people would be comfortable with this.
  • In Eastern Europe, where 80% of HIV+ people are drug users, existing harm reduction networks are utilized for HIV treatment information dissemination. They translate materials but do not yet have a good system for sharing them.
  • In Zimbabwe, there are moving advertisements on vans, which stop at central places. Because there is much illiteracy; they use mostly pictures to explain the messages to the people.
  • In South Africa, TAC uses moving exhibitions/community stories/workshops. For the workshops they work with doctors and involve HIV+ people, they download treatment information from websites. Specific materials are developed for demonstrations.

The following recommendations were proposed:

  • Illiteracy is a challenge in every region as is basic transportation and geographical isolation.
  • Develop an information requests/finder service by email/online/phone line
  • Develop a directory of existing materials (regional and international)
  • Develop a web-based international repository for materials
  • Northern NGOs (already funded) should support Southern NGOs to create, collect, maintain, update locally relevant materials (and streams of funding)

Drug Pricing, Patents and Access

(Table of Contents)

How do patents on drugs and diagnostics and national and international policies on intellectual property influence the price of these commodities and determine access in the developing world? What are the strategies that can be used by developing nations to ensure they can obtain equitably priced drugs and diagnostics, including generic equivalents?

Summary of Discussion

Participants began their discussion by defining the terms and the issues. These included the impact of the TRIPS Agreement (Agreement of Trade-Related Aspect of Intellectual Property) and Paragraph 6 of the "Doha Declaration" that discusses the scope of TRIPS on public health issues, particularly patents on drugs to treat public health emergencies. Also discussed were compulsory licensing, parallel importation, and strategies to accelerate the use of generic drugs. Other issues raised by participants included: concerns about counterfeit drugs, taxes and duties levied on ARV drugs and other medicines, and the quality of drug products.

On the national level, many specific barriers to drug access were raised, including:

  • The status of national patent legislation;
  • The negotiating position on intellectual property rights and access to medicines at the World Trade Organization and other forums;
  • Status of national essential drug lists;
  • Willingness to "fast-track" registration of AIDS drugs and diagnostics;
  • Capacity of national drug regulatory authorities to carry out quality assurance studies;

Strategies suggested to address these issues targetted:

  • National governments - contact trade, finance, commerce, and health ministries to inform them of issues and demands around key dates;
  • World Health Organization - strengthen, expand and accelerate the pre-qualification project; make dossiers available to local drug regulatory authorities on demand; provide technical assistance to national drug regulatory authorities on quality and drug registration
  • Global Fund to Fight AIDS, Tuberculosis and Malaria - Challenge national procurement policies which will rely solely on WHO pre-qualification after 2005

Stigma and Vulnerable Populations

(Table of Contents)

How can we overcome stigma, encourage people to be open about their HIV status, and participate in advocacy and education work? How do we deal with issues of personal safety in our advocacy? How do we encourage freedom of expression, and fight government censorship? How do we ensure that the most marginalized are represented in our efforts, particularly drug users, sex workers, refugees, women, men who have sex with men? How do we overcome discrimination and ostracization within our own organizations?

Summary of Discussion

Many comments focused on the need to support people who are HIV-infected in being able to discuss their HIV status with family, friends, and in public. These included:

  • People can stigmatize themselves. People need to overcome their own negative attitudes toward having HIV.
  • The need to provide support services to people, especially in post-test counseling, where the first impact of the news can be devastating.
  • The use of the Internet and e-mail is a good way for people to communicate with other infected people without threatening confidentiality.
  • As people want to be more open about their status and work as advocates, they need training and mentoring.
  • The terminology we use as we counsel people about their test result can have an impact on how the news is received. One participant said that they never use the term AIDS when they provide test results at their clinic. They tell people that they are HIV-positive and that people can live a long time with the virus. Similarly, rather than talk about the lack of treatment, talking about treatment is important in helping people come to terms with their illness and fight against it.

Other comments focused on overcoming stigma with communities and health care settings, including:

  • One way to destigmatize AIDS is by talking about other serious illnesses that require life long treatment. This helps to demystify HIV and make it feel like other diseases, which may also be serious, but are less threatening to people.
  • Health care providers need to be the leaders in dispelling stigma. They are looked to as experts and do much to overcome notions that there are reasons to be afraid of people with AIDS. AIDS patients should not be isolated in hospitals. AIDS care should be provided within all health care settings, not in separate AIDS centers, which can exacerbate notions that AIDS is different and that people with AIDS must be kept apart from others.
  • To avoid stigmatization, PWAs need to have confidence, to assert themselves. Our associations should not be cloistered; we should be visible and open. People change as they meet and know people with AIDS.
  • Marginalized groups at higher risk for HIV face discrimination regularly. Participants discussed at length the difficulties faced by drug users, gay men, sex workers, refugees, and others. Such discriminatory treatment not only hurts the affected individuals, but it furthers the spread of HIV because it keeps people from learning about HIV prevention methods, taking HIV tests and utilizing care and services.

How do we advocate against stigma and discrimination?

  • A legal framework to address discrimination is essential but it is not enough. The law is slow to act. Public education campaigns are also important. Advocacy to get media involved in raising awareness about HIV and overcoming stigma is needed.
  • It is essential that people be informed about their rights. If discrimination against people with or at risk for HIV is illegal, then people need to know this.
  • Legal services are needed to assist people in fighting discrimination. Legal advocacy is needed to pass laws to prohibit HIV-related discrimination.
  • There is an urgent need to discuss discrimination within our own organizations. Marginalized groups are excluded from participation in HIV support and advocacy groups. Active drug users, in particular, were mentioned as one group that is severely stigmatized within the HIV community.
  • One way to overcome stigma is to convince employers that educating employees about HIV and providing treatment to those infected is good for business.
  • What does human rights mean? Despite the overwhelming similarity in reports on stigmatization from region to region, there are many different definitions of human rights. In Russia, said one participant, we still don't know what human rights mean. HIV infection is not a privilege. We want the same rights as everyone, but not more.

Global advocacy efforts

(Table of Contents)

How do we work together across regions to advocate for more funding for treatment access, education and advocacy? How do we ensure broad and diverse representation from communities most affected by HIV/AIDS in discussions with local, national and international decision-makers? How do we engage with other health advocacy efforts?

Summary of Discussion

Using the framework of the WHO's goal of providing ARV treatment to 3 million by 2005, the discussants came up with three overarching areas of attention for advocates:

  • Accountability and action from national governments - this can take the form of seeking to develop and advocate for the implementation of national treatment plans to meet targets leading up 2005 and other needs. This would also include serving as watchdogs to determine if money from the Global Fund and other sources is being used appropriately and reaching those who need it most.
  • Adequate and substantial funding from wealthy nations - the UN and other sources have estimated that $7-10 billion is needed each year to combat global AIDS. Advocates need to work to ensure that governments are contributing to the GFATM and other funding mechanisms.
  • Accountability and action from UN agencies - WHO must provide the necessary technical assistance and a plan of action for national government to make rollout and coverage possible. The WHO must also release targets for each country of the number of people that should receive treatment by 2004 and 2005.

Several upcoming events were identified as important opportunities for advocacy. These include:

  • April 27 - Global Day of Action: Solidarity with the Treatment Action Campaign (TAC), which will continue its series of demonstrations demanding that the South African government deliver a national HIV treatment plan.
  • May 30 - World Health Assembly - Ministers of Health from around the world will meet at this WHO-sponsored event. It was proposed that advocates attend the assembly to lobby health officials and hold press events calling for treatment. Also, to use the Assembly as a reason to meet with health officials in country.
  • May/June - Global 8 (G8) meeting in Evian, France - another opportunity to appear and pressure governments to contribute substantial funds to the GFATM.
  • June - UNGASS: the UN will meet to discuss the progress of implementation of UNGASS Declaration.
  • September - WTO Ministerial meeting

Linkage with health care providers, drug treatment providers, NGOs, and other groups who provide care and education

(Table of Contents)

How do treatment activists and educators collaborate and build partnerships with others in providing HIV care, support, and education?

Summary of Discussion

Community involvement in education about treatment can be difficult to achieve because health care workers may be suspicious of the involvement of the community. Health care professionals may not take community-developed educational materials seriously unless they have been involved in their development.

The discussion recognized that the doctor-patient relationship is delicate, and that just as many doctors guard their status, many patients have become accustomed to placing complete trust in the knowledge of their doctor. Often, medical decisions are not made in partnership. However, experience from the 1980s showed doctors and patients in the developed world that a co-operative relationship that acknowledged the uncertainties that surround the treatment of HIV disease, and which encouraged discussion of treatment options, was a more productive approach. Several examples of good practice were reported.

  • In Tamil Nadu, NGOs conduct support groups providing an STD and ARV education component, and also carry out training to sensitize clinicians in order to improve the clinical encounter. The Indian Medical Association is currently being lobbied to carry out training that will improve the sensitivity of Indian clinicians towards ARVs, since many continue to maintain a negative attitude towards the possibilities of treating HIV disease.
  • Another Indian delegate reported on the linkages that have been developed between a regional medical college and local NGOs. The college communicates with local NGOs that can provide home care and carry out HIV awareness training, and refers patients who do not need inpatient care to these NGOs where appropriate. NGOs have also carried out awareness activities in schools and workplaces as a preparation for visits by medical teams.
  • In Nigeria, capacity building workshops have been conducted with clinicians and PWHIV, to provide training around ARV issues. Patient education forums have been found to be essential because clinicians do not have time for one-to-one educational discussions with patients. The need for further investment in peer education activities to support the roll-out of ARVs was noted; one intervention - peer counseling by HIV+ women - is currently restricted to a single center due to lack of funds to pay peer counselors for their time. A need to educate NGOs about who is eligible for treatment - and who is not - under Nigerian guidelines was also noted.
  • In Malawi, where antiretroviral treatment is also beginning to become available under a national program, people with HIV are involved in counseling about treatment and patient education at the initial hospital visit.
  • In Latin America and the Dominican Republic, local NGOs have also developed workshops for health care workers designed to educate on the perspective of people with HIV. These have led to improved working relationships between health care workers and local NGOs.
  • In Peru, it was possible to identify a multidisciplinary group of health care professionals personally affected by HIV who have been motivated to develop a program of training for health care workers.

These examples were found to reflect patterns of cooperation that had developed in Europe and North America during the 1990s as ARVs became more widely used. In the United Kingdom for example, the main providers of information on treatment for both PWHIV and health care workers are NGOs that work with medical professionals to publish treatment newsletters and other educational materials. Treatment advocates have also been involved in the development of treatment guidelines, and in outreach to marginalized communities in order to bring individuals into care. NGOs also provide health advocacy services for people who cannot negotiate with doctors.

In the United States, it has been important to develop skills amongst NGOs and health care workers on how to find and evaluate information about treatment, and to ensure regular training that keeps all involved up-to-date on the latest developments in HIV treatment. It is not enough to provide what one delegate called "drive-by training".

An underlying issue in much of the discussion was the current dependence of these good practice models on volunteers, nowhere more notably than in South Africa, where the Treatment Action Campaign has been able to mobilize large numbers of people with HIV to become involved in education and advocacy. Was this a peculiarly South African achievement, asked some delegates?

TAC delegates noted that individuals gained several benefits from being involved in volunteer activities, and that these benefits were not specific to the South African setting. For example, individuals were able to develop new skills, and TAC provided basic literacy training to volunteers, as well as food and transportation. The impact of these things on the self-worth of volunteers should not be underestimated, said TAC delegates.

A number of suggestions for action emerged from the workshop:

  • Given that doctors are overloaded in all settings, and often unaware of the resources available to them, one role for activists is to identify which services are needed by people with HIV, and to provide information to physicians on where those services are available. Activists need to ask questions about the availability of treatment in a sensitive fashion, recognizing that many health care workers are frustrated and angered by their inability to provide certain medications or services.
  • It is also important that doctors have some incentive to receive proper training, for example by working with insurers and governments to support a system of accreditation for antiretroviral prescription, and consequent discounted drug costs for individuals who sought care from accredited prescribers.
  • The importance of specialized treatment information providers in the NGO sector was noted, as was the importance of the linkage between harm reduction activities and AIDS treatment advocacy.
  • The development of networks to link health care providers across regions and to allow for better referrals to health care providers from social service providers was strongly recommended. Inclusion of pharmaceutical companies into such networks was suggested.
  • Materials providing information about HIV treatment are needed by both community advocates and medical personnel and methods to collect, adapt and distribute that information are needed.
  • Ethical guidelines for care and treatment need to be developed and enforced.



Reports from Regional Meetings

(Table of Contents)

Each regional contingent met twice. At the first meeting, they discussed the questions below. At the second meeting, held near the end of the conference, they discussed their priorities and plans to follow up the conference. Each group then reported their results to the full group. Summaries of the follow up plans are provided here. The differences in the formats of the summaries reflect the differences in the ways that each group structured their discussion and their report to the full group.

Questions from first regional meeting:

  • What are the particular treatment education and advocacy needs of the region?
  • How can ideas raised in the morning sessions be applied?
  • What are the obstacles people face in developing their advocacy efforts?
  • Which treatment education models might be most effective in the region?
  • How can regional networks and information sharing can be built and/or strengthened?

Africa

(Table of Contents)

The African contingent was the largest at the Summit. They first discussed the need to develop national treatment plans to provide accessible and affordable HIV treatment to those who need it. Such plans should be developed in collaboration with service providers and government. These plans need to include not only strategies to provide ARV therapy, but also treatment and prophylaxis for HIV-related opportunistic infections, diagnostic testing, HIV testing and counseling, and treatment education for people with HIV. Timeframes for the development and implementation of these plans must be set.

In countries where such plans already exist, the highest priority is implementation. The group called for the development and coordination of action plans to both support the current efforts in South Africa and further implementation in other countries.

There were many comments regarding difficulties of adequate PWA representation on government and funding committees. Sometimes there is no representation. Other times, the representation is not taken seriously and/or there is no accountability by representatives to the broader community. This is particularly true with regard to the Global Fund CCMs. Discrimination and stigma is still a major obstacle for people in learning about HIV, utilizing HIV testing and treatment services, etc. National and regional networks and organizations still have not made treatment access a high priority.

An overall need to support and strengthen communications efforts among treatment activists and educators was identified. Also, the need to gather and disseminate treatment education materials was discussed and repositories for information, training modules and other treatment education information were recommended. The contingent also discussed the dissemination of information about the Summit and agreed to send out the Final Report to donors, media, political parties, CBOs, unions, etc.

Many comments were made about the difficulties of working with funders in the region and the low level of accountability to the work. These included concerns about corruption within government and CBOs, lack of community representation in funding processes, overly burdensome application and reporting procedures in grantmaking, failure to sustain support for new programs, and proscriptive requirements for how funds must be utilized that are not always relevant to priorities in communities.

In addition, representatives made specific recommendations from their respective countries, as follows:

  • Cameroon - the PWA organization will seek to treat 6000 people by 2005
  • Uganda - will treat 100K people by 2005, will work to develop laws protecting workers with HIV
  • Malawi - conduct a needs assessment for treatment, develop a national strategic plan for treatment, and develop a national network of PWA organization.
  • Namibia - develop a national treatment plan and will create education programs to educate PWAs on ARV
  • Nigeria - needs to reorganize NGOs and donor agencies toward the primary purpose of implementation of the nation's national treatment plan
  • Mozambique - called for a national meeting to develop treatment plan
  • Kenya - address needs of refugees and include them in national health care plan. Seek to build a national treatment advocacy movement
  • Zimbabwe - unify organizations and act as watchdog to implement treatment plan
  • South Africa - enforce government commitment to treatment through demonstrations and civil disobedience. Begin to develop community organizational capacity for implementation of treatment plan.
  • Zambia - identify barriers to treatment
  • Senegal - provide OI drugs, nutritional support for people on ARV
  • Cote d'Ivoire - introduce generics within 6 months,
  • Ghana - assist refugees
  • Liberia - continued supply of ARV
  • Tanzania - train HCW, bring PWAs together, implement plan
  • Togo - needs generics, monitor and evaluate people on ARV, government should stop monopolizing distribution
  • Congo - implementation, build movement
  • PATAM - be made powerful enough to be represented in African Union and other regional bodies

South and Latin America, Caribbean

(Table of Contents)

  • There is a need to professionalize information developed by community advocates in our presentations to government and media
  • There is a desperate need for more laboratories to perform diagnostic tests.
  • People with HIV need access to information about their rights to health care and to protect them from discrimination.
  • Treatment advocacy efforts are underway in many countries, but opportunities to disseminate information about them are few. We need to develop information networks to share our experiences, strategies and needs.
  • Treatment education programs are lacking and need to be instituted within HIV service organizations and health care settings.
  • Our advocacy work would benefit from more intensive knowledge about international treaties and trade laws.
  • We need expanded knowledge about the legal status of homosexuality in each of our countries and about the ways that gay men are treated within our legal and health care systems.
  • Immigrants throughout the region need education, health care and advocacy support.
  • Unify prices of generic products throughout region
  • We need to have more in depth discussion to define the meaning of advocacy in our region, develop and share our strategies and set priorities for our work. We also need to build and strengthen our local and international networks.
  • We will used the HIV conference in Havana as an opportunity to build better networks, particularly with regard to the development and sharing of treatment education and information programs.

Eastern Europe and the Newly Independent States

(Table of Contents)

Parts of this region are facing the fastest growing epidemic in the world. It is an epidemic driven by injecting drug use and drug policy plays an important role in how the epidemic will progress over the coming years. Although AIDS case rates are still relatively low when compared to many African countries, HIV rates are rapidly rising and the possibility of a large, generalized epidemic is very great. The participants cited that the diversity of the region makes overall and regional strategies difficult to develop and pursue. The major focus of discussion was on the countries within the NIS, as these face the most serious epidemic at this time. Also, Central Europe and the Balkans were not well represented at the meeting.

The contingent called for the development of regional links to share existing materials in different languages, share strategies and experiences, and to develop a roster of regional experts in different aspects of treatment advocacy, education, self-support group development, etc. The need for translation of treatment information materials into Russian was cited. Several other needs were discussed, including: the need to act as watchdogs to oversee progress in implementation of GFATM programs, the challenges of inclusion of drug users in advocacy and education efforts.

The group outlined their principles and priorities as:

  • Advocate for greater involvement of people living with HIV/AIDS in all decision-making processes;
  • Include access to substitution treatment (e.g. methadone) in its advocacy agenda
  • Involve harm reduction activists into treatment advocacy through the distribution of treatment information and by encouraging harm reduction organizations to become more actively involved in the work HIV treatment advocacy.
  • Training and materials to encourage support and sustain HIV treatment advocacy are needed. Many HIV support organizations do not include advocacy as part of their mission. This needs to change.

AIDS activists will gather in Minsk in May 2003 in follow up to the Cape Town Summit. The follow up meeting will provide advocacy training, allow participants to further develop their advocacy agenda and strategize toward the implementation of that agenda, and discuss how to develop better communications capability.

Asia and the Pacific

(Table of Contents)

The contingent first discussed many of the problems in the region and the obstacles they face as advocates. The lack of treatment, diagnostic testing, treatment information, and availability of HIV testing were the primary concerns. The region is also defined very broadly and it is extremely difficult to organize regionally over such a large geographic, politically and culturally diverse area.

There is a strong need to share information, disseminate and translate treatment information materials for people with HIV and for health care providers, whose overall knowledge of HIV treatment was low. While several networks within the region exist, treatment is not yet a high priority for them. Fear of discrimination and apathy keep people with HIV from becoming involved in activism and support networks. Quackery is a problem in many parts of the region and many people are spending what little money they have on unproven home remedies. Although there is a vibrant industry in India and Thailand producing high-quality generic drugs, these drugs are not often available at low prices in their home countries. Interventions to include marginalized groups such as active drug users and gay men in advocacy, education and support activities are needed.

More sustained funding is paramount. Funding is needed, not only for service and treatment provision, but to support advocacy and education work. There were many complaints about a lack of direct access to funders, the difficulties of meeting proscriptive funding parameters, the lack of representation by community members in funding decision-making, and the lack of sustainability of funding streams. Training in proposal writing is also needed.

Cross cutting issues were identified by the group along with steps to address them:

  1. Urgent need for IEC materials for Cambodia, Pakistan and Nepal among many other Asian/Pacific countries.
    Action Plan: INP+, and SAATHII from India and TNP from Thailand will take lead on sending the existing materials. Financial resources for this activity needs to be identified and secured

  2. Urgent need for capacity building and funding of positive groups on treatment advocacy, access and treatment issues (Nepal, Cambodia, India, China, Indonesia, Vietnam and Laos)
    Action Plan: A) All the delegates will work together to set up skills building workshops at the regional, national and international conferences. B) Additional funding will be requested to develop a regional center for ongoing capacity building program for positive groups in the region. C) Depending upon the resources available INP, TNP and other successful positive groups will share their skills with members from other Asia-Pacific countries. D) All the delegates will advocate for additional funding from UNDP, UNAIDS, FHI and other sources towards capacity building and empowerment of PLWHA groups.

  3. Urgent need for updates on patent issues and importing issues specific to each region in user friendly, easy-to-read formats.
    Action Plan: Information on these topics will be shared through the Asia-Pacific Treatment Access Yahoo groups. One or two delegates will be requested to volunteer to update the group on patenting and importing issue on ongoing basis. A coordinated plan will be developed to assist advocates from each country in understanding these issues with relevance to their countries and in developing advocacy plans accordingly.

  4. Assistance in setting up of buyers clubs:
    Action Plan: The group will follow up on setting up of Buyers Club in various countries to begin the process share existing information on setting up of Buyers Club through the Asia-Pacific Treatment Access Yahoo groups. Groups from India and Thailand will assist in procurement of quality drugs. However close attention must be paid to ensure the PHA groups are as fully aware of all the consequences of starting ARV and have adequate health care infrastructure, CD4 monitoring and sustainable resources in place before any such project gets underway.

  5. Urgent need to develop strong collaboration and networking among positive networks across the regions to work on treatment advocacy, access and education.
    Action Plan: There was a dinner discussion at the conference on potentially starting a coalition of API treatment advocacy and education. The minutes of this meetings will be posted in a separate mail.

Treatment access is not on the APN+ current agenda. Several participants volunteered to make treatment access, advocacy and education one of the priority areas of APN+ agenda. All the delegates at this meeting who are also APN+ members will work towards this goal.

APN+ is an exclusive body for HIV positive people with one delegate representation from each Asia-Pacific country. These delegates are expected to represent and disseminate information for all the positive members in their country. APN+ will be playing an important role in the 7th ICAAP at Kobe in November 2003 and the 2004 World AIDS conference in Bangkok.

  1. Urgent need to develop a mechanism for ongoing communication on treatment access, advocacy and education among members from the Asia/Pacific region
    Action Plan: Volunteers agreed to set up a listserv to facilitate ongoing communication among API members.

  2. There is a need for creating a space for neglected positive groups including sexual minorities, drug users and affected families with mainstream positive groups.
    Action Plan: To be determined

  3. There is an urgent need for training the health care providers in various API countries. There is need for a training the providers on following WHO guidelines and there should be some mechanism where every doctor providing HIV care receives minimum training on HIV issues.
    Action Plan: To follow up with WHO, UNAIDS, CIPLA, Treat ASIA and other resources for investing more money towards this goal.

  4. Global Fund: we should encourage all the API countries to apply to the Global Fund to scale up treatment in their respective countries in equal partnership with the civil society during the third cycle (May 30th)
    Action Plan: To be determined

  5. Suggestions for sharing education materials across the region:
    • Setting up of treatment information help lines
    • Setting up of a web-based resource center, contacts and resource materials for the region
    • Asian regional center for creating, collecting and disseminating the treatment education materials and for training positive individuals on treatment advocacy and training.

North America, Western Europe, Australia, Japan and New Zealand

(Table of Contents)

The development and dissemination of treatment education materials was a major subject of discussion. There is significant experience in developing these kinds of materials from within this region. The need to make them easily available to a global audience is paramount. Different ideas about how to disseminate information were raised, including a staffed e-mail and phone service, a web-based materials repository, and others. There was no agreement about which approach would be best and, more than one approach should be tried. Similarly, with the materials themselves, it was felt that all types of materials should be made available and people should be able to sort through and choose the ones' they need or like, adapting them to better meet their needs. This is the "box of chocolates" approach. The creation of a working group was proposed to gather information about information dissemination needs and propose an infrastructure for meeting those needs.

Trainings were identified as another important way to provide assistance and support. Trainings must be coordinated with on-going activities. "Drive by" trainings were not considered useful or cost-effective. These were defined as stand-alone trainings where a group from a developed nation comes in, provides some brief training and then leaves. The need to provide on-going support and have training tied to longer-term efforts is essential. Trainings should cover not only treatment information, but advocacy skills, organizational development, etc. A database about various types of trainings should be made available.

With regards to advocacy efforts, there was strong consensus to support the Treatment Action Campaign's efforts to force the South African government to develop and implement a national treatment plan. This support would include participation in an International Day of Solidarity with TAC later in April as they engage in demonstrations. Most important is the continued need to press wealthy nations to increase their contributions to the Global Fund and other funding sources. Several other upcoming events, such as the World Health Assembly, the update to the UNGASS, and the G8 meeting were cited as places where the treatment advocacy agenda can be forwarded. Meeting with the incoming Director of the WHO was also listed as a priority. As advocacy work proceeds, the group discussed the need to encourage, build and support indigenous leadership from each of the global regions. There was concern that in many of the international advocacy arenas, advocates from developed nations were over-represented in leadership positions. However, there were no specific suggestions about how to change this.

The need to create more direct and transparent links between funders from the West and North with community organizations and advocates in the developing communities was also stressed. There was support for the development of community-based funding panels to help set priorities for funding and review funding applications. There was also agreement that funding processes should be transparent and that administrative and overhead costs set by funders should be disclosed and reasonable. Again, the need to facilitate information exchange between funders and potential grantees was stressed.

Other issues that were raised included the need to acknowledge that the US-led war in Iraq is misguided and will affect both our ability as advocates and the world's ability to respond effectively against AIDS. There was also great concern that US policy regarding abstinence-based prevention programs and reproductive rights would seriously undermine HIV prevention efforts and the human rights of women. Also raised was the need to address violence against women and the treatment of migrants as human rights issues that impact the spread and treatment of HIV.



Meeting with Funders

(Table of Contents)

Representatives from several international organizations and foundations attended the Summit as observers. While many of the international organizations, such as UNAIDS (a funder of the Summit), are not primarily funding agencies, providing funding and other assistance to support advocacy and educational activities is an important part of their mission. A meeting was organized by the Tides Foundation to allow representatives from the funding entities to meet and converse with Summit participants. Participants from industrialized nations were asked not to attend this session in order to provide a more intensive opportunity for participants from the developing nations to meet directly with funders. Each funding organization gave a short presentation about their agency, the kinds of projects they fund, their funding process, and their thoughts about how to improve funding for treatment preparedness. Summaries of these presentations are not provided here. However, more information about each of the participating agencies can by found at their websites. The addresses are included in the Participant List of the Appendix.

Several topics of concern were raised during the discussion. They are summarized here.

  • Setting funding priorities: Community members asked to have greater input into how funding priorities are set. Very often priorities and funding parameters are developed that do not address the immediate concerns of people providing services on the ground. They are often left trying to develop program proposals to meet the requirements of the funder rather than the needs of the people in their communities. Community-based funding panels that would set priorities and assist in making funding decisions were recommended. Funding priorities are often paternalistic. One participant angrily described programs that taught her to cook and provided training to be a volunteer at an AIDS organization. She said, "I don't need to learn to cook. I know how to cook. I had a life before I had AIDS. I don't need to be a volunteer. I need a job. I need to pay the school fees for my children. Instead, I am given a volunteer position and not even given transportation money to get to the agency."

    • Problems with re-granting and partnering: Very often funders will supply money to governments or larger NGOs that will then disburse the funds to community organizations through regranting or partnership arrangements. Many problems with this were raised. First, there is a problem with corruption. Money meant to go for community-based services does not get to the communities. Also, regranting organizations will set their own priorities for service provision that do not correspond with the needs of the local communities, who have little say in how those priorities are established. Very often, these partnering organizations are located within developed nations. Another complaint regarded the high administrative fees exacted by some regranting agencies. Overhead costs must be reasonably set so that as much money as possible is used for direct services and advocacy. Other partners or regrantors may discriminate in the kinds of services or education that can be offered because of their religious affiliations. US government policy restricting the use of family planning dollars and stressing abstinence in HIV prevention programs is similarly problematic for many providers.

    • Information dissemination: Both funders and community members agreed that there is a pressing need for better information dissemination between funders and potential grantees. Funders need information about which organizations are providing the types of services in the regions in which they provide funding. Community groups need information about which funders are interested in funding services within their respective regions. Training is needed for grant application preparation.

    • Building and sustaining capacity: There were many concerns raised about the inability to receive sustained funding for programs. Many participants complained that funders would change funding priorities arbitrarily, defunding programs despite a history of success. Administrative costs are often not covered. How can programs build sustained capacity when they cannot cover administrative costs? Also raised was the need to provide funding for HIV treatment for project staff. If funders encourage the involvement of people living with AIDS, then treatment must be available to support the staff and volunteers and keep them alive and healthy.

    • Burdensome administrative requirements: There were complaints about application procedures being too complex. People do not have the time to write complicated grant applications when they are overwhelmed trying to provide services to people in need. Reporting requirements are also a problem. Methods to streamline the process are needed.

    Conference Agenda

    (Table of Contents)

    The International Treatment Preparedness Summit

    organized by an ad-hoc coalition of treatment activists from around the globe

    with the support of

    The Global HIV/AIDS Program and the

    AIDS Campaign Team for Africa (ACTAfrica) of the World Bank;

    Joint United Nations Programme on HIV/AIDS;

    HIVOS (Humanistic Institute for Development Cooperation);

    World Health Organization;

    Catholic Medical Mission Board;

    American Jewish World Service;

    AIDS Fonds Netherlands;

    International HIV/AIDS Alliance;

    Tides Foundation;

    The Initiatives Foundation

    The Gatsby Charitable Foundation;

    Elizabeth Glaser Pediatric AIDS Foundation;

    United Nations Development Programme

    March 13 - 16, 2003

    Ritz Hotel

    Cape Town, South Africa

    AGENDA

    DAY ONE: Thursday, March 13

    9:00 - 9:10: Welcome - Zackie Achmat, Treatment Action Campaign, South Africa

    9:10 - 9:30: Opening -

    Gregg Gonsalves (USA)

    Onos Imhanwa (South Africa)

    • Goals of workshop
    • How did we get here?
    • Who is here?
    • Agenda review
    • Logistics

    9:30 - 11:00: Opening Plenary -

    Moderators:

    Phill Wilson (USA) and Sunil Babu Pant (Nepal)

    Speakers:

    • Vladimir Zhovtyak (Ukraine)
    • Carlos García de León (México)
    • Kevin Moody (Netherlands)
    • Sipho Mthathi (South Africa)
    • Paisan Suwannawong (Thailand)

    (Panel presentation followed by group discussion):

    • What is treatment advocacy and how do we define it?
    • Why is treatment literacy important and how do we define it?
    • Ensuring that advocacy and education efforts reach those who need it most.

    11:00 - 11:30: BREAK

    11:00 - 12:30: Scaling Up to Provide Treatment

    Moderators:

    Moses Imayi (Nigeria) and Lucia-Maria Stirbu (Romania)

    These presentations should be 10 minutes each and either be broad overviews of a given topic or case studies of "real-world" examples.

    • A review of the WHO ARV guidelines and WHO plans for treatment provision
      Sai Subhasree Raghavan (India)
    • Where is the funding for treatment and the infrastructure in which to use it? How is it disbursed?
      Sharonann Lynch (USA)
    • Obtaining ARV drugs - pricing, patents, procurement, distribution
      Germán Humberto Rincón Perfetti (Colombia)
    • Infrastructure needed to use ARV effectively - diagnostics, health care personnel, adherence support, side effects management
      Michael Ali (Guyana)
    • MTCT prevention needs
      Bactrin Mutabari Killingo (Kenya)
    • OI prophylaxis and treatment - establishing and providing a standard of care
      Mark Harrington (USA)

    12:30 - 1:30: Lunch

    1:30 - 5:30: Reports from regions and countries (break taken mid-way):

    Moderators: Flor de Maria Alvarado (Nicaragua) and Suzanne Lau-Gooey (Australia)

    Speakers:

    • Roman Dudnik (Russia), David Ananiashvili (Georgia) and Lucia-Maria Stirbu (Romania)--Eastern Europe/Former Soviet Union
    • Olayide Akanni (Nigeria), Mercy Otim (Kenya), Grace Muro (Tanzania), Israel Asamoah (Ghana), additional speaker to be determined--Africa
    • Venkatesan Chakrapani (India), Gregg Manning (India), Tao Cai Guangzhou (China), Gregory Robert Gray (Thailand) Edward Low (Malaysia)--Asia
    • Cesar Ernesto Castellanos (Dominican Republic), Guillermo Murillo (Costa Rica), Javier Pablo Anamaria Cardenas (Peru)--South and Latin America and the Caribbean

    Each region will have an hour to offer a presentation and questions and answers on the state of treatment access, education and advocacy in their region. The presentations can be broad regional overviews or discussions specific case studies from a selection of countries within a given region.

    Topics covered would include:

    • What is the state of treatment availability in the country/region?
    • Description of current treatment advocacy efforts in country/region.
    • Description of current treatment education efforts in country/region.

    6:30 - 7:30: Reception

    7:30 - 9:30: Dinner

    DAY TWO: Friday, March 14

    9:00 - 9:30: Preparation for break-out groups

    Moderators:

    • David Barr (USA) and Chatinka Nkhoma (Malawi)

    Facilitators will describe the purpose of the breakout groups, where groups will meet, and how report backs should be organized.

    There will be two general topics and two sessions. This will allow everyone to participate in both discussions. Groups will be mixed regionally and be re-configured for each session so that we all get to interact with a larger number of people):

    (1) Identifying treatment literacy needs, obstacles, and models:

    • Why is treatment education for people with HIV important?
    • What are the components of treatment education for PWHA?
    • What is needed to provide effective peer-based treatment education for people with HIV?
    • What are the obstacles and challenges in providing effective treatment education?
    • What are the models and ideas for overcoming obstacles and providing treatment education?

    (2) Identifying treatment advocacy needs, obstacles, and models:

    • How do we define treatment advocacy?
    • What are the issues that concern treatment advocates?
    • What are the obstacles we face in building and maintaining our advocacy efforts?
    • What are the effective models for treatment advocacy on international, national and local levels?

    9:30 - 11:00: Breakout session one

    Moderators:

    • Iryna Borushek (Ukraine) and Claire Wingfield (USA)-Treatment Literacy
    • Rama Padian (India) and Julio Cesar Aguilera Hurtado (Bolivia)--Treatment Advocacy

    11:00 - 11:30: Break

    11:30 - 1:00: Break out session two

    Moderators:

    • Hope Mhereza-Byarugaba (UK) and Keith Alcorn (UK)--Treatment Education
    • Anastasya Kamlyk (Belarus) and Karen Cohen (South Africa)-Treatment Advocacy

    1:00 - 2:00: Lunch

    2:00 - 3:00: Report back from groups and discussion

    Moderators: Iris Irene Kavege (Togo) and Olive Edwards (Jamaica)

    3:00 - 3:30 Break

    3:30 - 5:30: Regional meetings:

    Moderators:

    • Anastasya Kamlyk (Belarus) and Sandris Klavins (Latvia)--Eastern Europe/Former Soviet Union
    • Lydia Mumgherera (Uganda) and Moses Imayi (Nigeria) ---Africa
    • Karyn Kaplan (Thailand) and Andy Quan (Australia)---Asia
    • Enrique Chavez (Peru) and Rodrigo Pascal (Chile)---South/Latin America and Caribbean
    • Eric Fleutelot (France) and Polly Clayden (UK)--United States, Canada, Western Europe, Australia, New Zealand and Japan

    Participants will meet by region to discuss:

    • What are the particular treatment education and advocacy needs of the region?
    • How can ideas raised in the morning sessions be applied?
    • What are the obstacles people face in developing their advocacy efforts?
    • Which treatment education models might be most effective in the region?
    • How can regional networks and information sharing can be built and/or strengthened;

    6:00- 7:00 Overview of Medecins Sans Frontiere/Doctor without Border's Khayelitsha AIDS Project

    7:30: Dinner

    DAY THREE: Saturday, March 15

    9:00 - 12:00: Coordination and collaboration -

    (There will be two sessions of discussion groups. Individuals will choose where they want to go.)

    1. Funding - How can community advocates and educators influence funding priorities? How do funding priorities get set within and across regions? What do advocates and educators need to gain better access to funding streams? What are our concerns as funding flows from west to east and north to south?

    2. Communications/Materials repository and dissemination - How can we use existing networks and/or create new ones to communicate with each other, discuss strategies, disseminate information? How can we strategize effectively on global issues and ensure that priorities and goals are set collaboratively? How can we share treatment educations materials? How do we meet our translation needs? How do we keep materials current and up-to-date? What formats are best for treatment education region to region?
    3. Drug Pricing, Patents and Access: How do patents on drugs and diagnostics and national and international policies on intellectual property influence the price of these commodities and access to them in the developing world? What are the strategies that can be used by developing nations to ensure they can obtain equitably priced drugs and diagnostics, including generic equivalents?
    4. Stigma and Vulnerable Populations -How can we overcome stigma, encouraging people to be open about their HIV status, and participate in advocacy and education work? How do we deal with issues of personal safety in our advocacy? How do we encourage freedom of expression, and fight government censorship? How do we ensure that the most marginalized are represented in our efforts, particularly drug users, sex workers, refugees, women, men who have sex with men? How do we overcome discrimination and ostracization within our organizations?

    5. Global advocacy efforts - How do we work together across regions to advocate for more funding for treatment access, education and advocacy? How do we ensure broad and diverse representation from communities most affected by HIV/AIDS in discussions with local, national and international decision-makers? How do we engage with other health advocacy efforts?

    6. Linkage with health care providers, drug treatment providers, NGOs, and other groups who provide care and education - How do treatment activists and educators collaborate with others in providing HIV care, support, and education?

    9:00-10:30: Coordination and Collaboration session one (Groups A, B, C)

    Moderators:

    • Group A/Funding:
      Rodrigo Pascal (Chile) and Masaki Inaba (Japan)
    • Group B/Communications/Materials repository and dissemination:
      Emily Bass (USA) and Matilda Moyo (Zimbabwe)
    • Group C/Drug Pricing, Patents and Access:
      Sliven Konev (Bulgaria) and Rachel Cohen (USA)

    10:30-11:00: Break

    11:00-12:30: Coordination and Collaboration session two (Groups D, E, F)

    Moderators:

    • Group D/ Stigma and Vulnerable Populations:
      David Ananiashvili (Georgia) and Delme Cupido (Namibia)
    • Group E/ Global advocacy efforts:
      Stu Flavell (Netherlands) and Promise Mthembu (UK)
    • Group F/Linkage with health care providers, drug treatment providers, NGOs, and other groups who provide care and education:
      Eugenia Davis (Philippines) and Anyamela Chukwuemeka Obinna (Nigeria)

    12:30 -1:30: Lunch

    1:30 - 3:30: Regional meetings - next steps

    Moderators:

    • Roman Dudnik (Russia) and Raminta Stuikyte (Lithuania)--Eastern Europe/Former Soviet Union
    • Marie Mendene (Cameroon) and Karen Cohen (South Africa)--Africa
    • Karyn Kaplan (Thailand) and Andy Quan (Australia)---Asia
    • Guillermo Murillo (Costa Rica) and Germán Humberto Rincón Perfetti (Colombia)--- South/Latin America and Caribbean
    • Mauro Guarinieri (Italy) and Mark Harrington (USA)--- United States, Canada, Western Europe, Australia, New Zealand and Japan
    • How will the group report on this meeting to their communities?
    • How will you continue the discussion and activities from this meeting?
    • What are your priorities for advocacy?
    • What are your next steps in your advocacy agenda?
    • What are your priorities for treatment education?
    • What are your next steps in your education agenda?

    3:30 -5:00: Report back from regional meetings

    Moderators:

  • Saban Laryea (Ghana) and Bruce Kilmister (New Zealand)
  • 5:30-6:30: Informal Question and Answer Session on the Global Fund to Fight AIDS, TB and Malaria

    7:30: Dinner

    DAY FOUR: Sunday, March 16

    9:00 - 12:00: Meeting with Funders:

    Participants from developing countries will meet with representatives from funding organizations to discuss funding needs and mechanisms.

    12:00-12:30: Press Conference

    12:00 - 1:00: Lunch

    1:00 - 4:00: Meeting with Global Fund to Fight AIDS, Tuberculosis and Malaria

    3:00 - 4:00: Next steps and conclusion

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