Because of AIDS, We Become Friends
The story of the eastern network of people living with HIV/AIDS

Rungrote Tangsurakit
Boripat Donmon
Saowanee Klinpaka Uraiwan Wongkhao-on
Naiyanun Janjaeng
Bang-orn Mingmanee
Somchai Yongprueksa
Camillian Social Centre, Rayong
Reproduced with Permission

Contents

Presentation

It has been 6 years since 1999 that people living with HIV/AIDS in eastern Thailand got organized at local, provincial and regional level to support one another and to address their common problems.

Why do they have to get together? This could be a question for many. They might have different answers. Some are contradictory. Some might support this organization, while others do not. Some are confused.

This paper is an attempt to document reasons, nature and methods of organization as local association and regional network, events which brought to initiation of certain activities, what they have learned in the past six years, their hope, suffering, grievances, joy, dream, determination. Their life is a journey that is not very different from other groups of people in society. This document is the work of several rounds of discussion. We have recalled our experience, discussed and helped add on to make it more complete so that it would truly reflect our life and work. We were serious in preparing this small document with an intention that it would be a story of our life to benefit and provide lessons for newer generations to come. It also helped us to reflect on what we have done in the past and should do in the future. It shares our experience for those who are in this field of work with the same commitment, as well as publicizing our work and advocating public policies that are favorable to people living with HIV/AIDS and society as a whole.

This work is possible thank to strong and firm attempt and participation of all staff members and network committee members. We also got insights from our colleagues in the prevention program of Camillian Social Centre Rayong to make this work as complete as possible. We only want this work to truly benefit all parties. Although this work records failures and mistakes, but we do hope that these shortfalls would be our teachers so that we will not repeat these mistakes in the future. We still remember someone used to say a word of wisdom that ~The first mistake is a teacher, the second one is a fool~.

It is our wish to express our big thank to all past and present network committee members who had a part in writing this page of history of the Eastern Network. All have contributed their wisdom, labour and life experience to lead the network for the benefit of their fellow people living with HIV/AIDS and society at large.

At this point of history, it is very important to mention all members of the network, because they are the ones who are the contents of the history of the network. The network grows, becomes strong, progresses, learns and works because of these members. It is their own story, the story of society as a whole and humanity.

This work will not be possible without ongoing support from Fr. Giovanni Contarin and Camillian Social Centre Rayong, to whom we are thankful. This significant contribution enabled the network to achieve concrete outcomes.

We thank you all.

Evolution and Development

The Eastern Network of People Living with HIV/AIDS has been established in 1999. During the past six months, the members have always drawn lessons from their work reviewed goals and target, evaluated the operation and planned new programs and activities to respond to new challenges and cope with new situation in which people living with HIV/AIDS are facing. The challenges and situation involve the area of care, access to care, antiretroviral therapy, health of people living with HIV/AIDS, policies, organization, and so on. This document sums up brief evolution and development of the Eastern Network in the past 6 years in the following diagram.

PeriodMain PurposesResultsNew Challenges

First phase: July 2000~June 2003

  • Mobilising PHAs.
  • Providing information on care.
  • There were 30 local associations of PHAs with 1,500 members.
  • 1,642 has access to OL and ARV care and therapy.
  • Need for promoting greater access to care.
  • Need for involving PHAs in caring for themselves.
  • Need for advocacy.

Second Phase: June 2003 ~ July 2006

  • Empowering PHA leaders and network.
  • Access to care
  • Advocacy
  • There were 54 associations, 5 provincial networks with 6,00 members.
  • Coverage of OI and ARV therapy by social security and national health security systems.
  • Need for PHAs to participate in care and healthcare system.
  • Need for developing new leaders.
  • Need for comprehensive anc continuous care.

Third phase: June 2006~July 2009

  • Participation of PHAs in care.
  • Build capacity of new leaders.
  • Monitoring implementation of national healthcare system and social security to cover PHAs.
  • Center for Comprehensive and Continuous Care is sete up in district hospitals.
  • PHAs work closely with health personnel to provide care service to PHAs.
  • PHAs closely monitor implementation of public health policies for PHAs.
*

Network: An Organizing Process

From its work carried out in the past decade, it has formed several associations, built capacity of local and regional leaders, developing several strategies to address current situation, taken action and implemented many activities to reach its goal of improving quality of life of people living with HIV/AIDS. Its aim is to promote access to care and treatment by integrating it in public health system of the country to ensure its sustainability.

Policies and systems are not given, but demanded and advocated. People living with HIV/AIDS share common problems. Therefore, they need to join hand and take concerted action to advocate for favorable policies and systems according to their legitimate rights proper to their human dignity. They need to be organized and empowered.

Given its experience learned from a decade of operation, it has identified the following process of organising-mobilising, which is a tool helping it to achieve its goal and objectives.

Organising-Mobilising Process
Identify Common ProblemsIdentify / Develop LeadersForm GroupTake Action to Solve Problems
  • Health (physical, mental, emotional)
  • Rights (access to care, treatment, welfare, employment)
  • Patents
  • Social (rejection, stigma, discrimination)
  • Field visit
  • Dream team
  • Capacity building of leaders
  • Other training, seminars
  • Exchange
  • Study trips
  • Develop new leaders
  • Mutual aid
  • Local associations
  • Provincial, regional, national network
  • Cross-issue partner networks
  • Committee members
  • General assembly
  • Retreat
  • Link with communities
  • Partnership
  • Care, treatment
  • Buyer Club
  • Counselling
  • Pledge not to spread HIV
  • Prevention in community
  • Advocacy
  • Access to medicines and care, social security system, health security system
  • Other activities for society.
  • Vocational promotion
  • AIDS response Standard Organisation (ASO)
  • Vaccine test

1. Identify Common Problems and Needs

This is the first step in organising. It is necessary to be in touch with people to identify their common problems. In this case, they are health problems, discrimination and stigmatization. After identifying common problems, it is necessary to reflect and analyze the most immediate problem and develop it as an issue. Only through awareness of common issue that action can be taken. This step needs a good organizer who first builds up friendship and trust with people living with HIV/AIDS. This step is the task of an organizer.

2. Identify, Develop Leaders

While identifying common problems and developing an issue, the organizer needs also to identify leaders or potential leaders who could be developed. Leaders are ones who have certain power to influence some or most members of the group. There should be at least a few leaders in the group, and a plan to develop some more for sustainability. These leaders will also play key role in linking with other groups sharing common problems and other partners to seek their support to their solution.

3. Form Group

Having developed an issue and identified leaders, the organizer tries to form group based on this issue by encouraging and motivating leaders to form a group to discuss their problem, concern, hope, and possible action to address their problem. All the members should be aware of a need to take concerted action; otherwise solution would not be possible. They should join hands to have more power and a better chance to solve their problem. The bigger number they have, the more power they have. To address bigger problem, they need to link with other groups to form a bigger network, hence the more power they would have. It is more effective to form a group of people sharing common problems and live in more or less in the same area for more convenient meeting and communication.

4. Take Action

After forming a group, action should be taken, especially to address their common problems. It is necessary to take small, concrete and possible action to give them greater confidence. First more small actions to address small problems, then bigger action to address bigger ones. Without action, the group will not survive long.

Organising Method and Process

The Eastern Network of People Living with HIV/AIDS started its work with an idea to help improve quality of life of people living with HIV/AIDS. At the beginning, it did not have direct experience in organising people to form their local associations and build a provincial or regional network. Some leaders in the Network has attended meetings and workshops at national level and talked with leaders from other network as well as NGOs. Yet, they still did not have a clear method or approach in organising. These leaders have done their work followed by regular and ongoing reflection and evaluation, which was a useful process helping them to be more systematic in their organising effort. The following account is what they have articulated as their organising process.

Methods of Organising

In organising people living with HIV/AIDS to get together as association, the Network has identified, from its experience, four methods, which in a sense differ but also complement one another.

1. Internal Agent

This method is an organising by an agent. This agent can also be called extension worker, organizer, animator, facilitator, intermediary, or even leader or militant. He/she is the main actor in approach members to identify common problems or needs. The role of this agent is crucial, and is normally from inside but also share similar problems or needs. In the course of organising, the agent needs to plan, from the very beginning, to develop local leaders and foster active genuine participation of all the members, for sustainable organization and empowerment. There is a risk that agent dominate or exercise too much influence on members or even leaders.

An example of this method is a case of the local association in Klaeng. Later, the Eastern Network has taken up this mission and plays a key role in using this method of organising. It has what they call field co-ordinators whose task is to extend the work by forming and supporting local associations.

2. External Agent

An external agent is someone from outside or even inside, but does not share me same problem or needs. Due to his/her assignment or commitment of free choice, he/she wants to help people living with HIV/AIDS. They are people from, for example, health unit, non-government organization (NGO), civil society group, educational institution, etc. There is tendency that this external agent dominates or exercises certain influence in decision-making of the group, whether consciously or unconsciously.

There are many examples in this regard, especially early associations, such as an association in Ban Chang.

3. Self-Organising

This is a rare case of organising and occurs spontaneously. People who have common problems accidentally met and shared their problems, mutual encouragement and hope. They started to get together informally and share their concern, anxiety, problems, and perhaps also some possible solution. This self-organising is the only method mat does not occur because of outsiders, but exclusively by the affected people themselves. However, within this group there is or are someone who are informal leaders who have certain power to influence other members. These leaders are called "militant", who act as members cum organizers.

An example of this self-organising is me case, for example, a local association of Song Phi Nong. Although group emerges by itself, it needs support from outside, especially a network of people sharing common problems or needs.

4. Group to Group Extension

This method of organising is done by an existing group extending or initiating people having similar problems and needs to form new group or associations among themselves. This method of organising is more collective man me earlier methods. Normally, some members of an existing group visit people in me neighboring or its target extension area. This method can only be done when a higher level network exists, such as provincial or regional.

Groups emerged through this method of organising are easily incorporated into a higher network. Most of recent associations are formed through this method of organising.

An Example of Organising Process

Being aware of me infection, each people living with HIV/AIDS went to see doctor at hospital, especially local or district hospital in the first visit. There, they met other positive people also waiting to see doctor. They faced the same crisis in life and had similar health problems, such as no medicine for treatment, no knowledge nor method of treatment, and so on. They were also discriminated against. They had to wait for long hours, or got the service after other clients. They were rejected by their communities. Some were abandoned by their families. These were the situations that people living with HIV/AIDS had to face. When they came to the hospital, they met other people of me same fate. This was a good time when they felt better, even were happy. They had a chance to share and discuss their common problems. Although they talked about problems at the beginning, they felt mat mere were also other people facing me same problems. This kind of meeting helped them to be relaxed. When they met more often, they have developed friendship and were concerned when they did not meet someone. Finally, they arranged informal gathering at their homes in rotation. In this gathering, they talked and shared meals or had some activities together . In each gathering, not only these people met, sometimes their relatives also joined their conversation. They started with a small group with friendship and mutual concern. They have got friendship from a group of people mat they have never thought of getting such impression before, which were not limited only people living with HIV/AIDS, but also their relatives who were generous to one another.

However, this gathering not only provided good impression, but sometimes also created pressure from some unfriendly words from neighbors when they saw and knew that these people were infected with HIV. Yet, these unfriendly words, not only created pressure on them, they also provided a motivation at me same time. These words challenged them to prove that although they were HIV positive, they could also live a long life, take care of their families like other community members. They also believed they could also be useful and responsible to society like the rest of society.

Therefore, they got organized closer and stronger. To do so, they thought of something they could do to show that they did not just get together for fun or roaming around. They wanted to do something useful or address their problems. Some of them had more experience and could talk better or persuade other positive people to join them became leaders in leading their conversation on healthcare, which was me main concern of most people living with HIV/AIDS, including proper care and treatment. They shared their experience with one another , as well as their concern with one another . Furthermore, they also talked with their relatives and helped take care of their sick and helpless family members, which was mutual aid among them. This was one way, they mought, to foster acceptance for mutual living. They also had a common agreement not to spread me virus to others, and would help introduce prevention to other people.

However, they still did not have update or accurate information on healthcare and treatment. As a result, their friends continued to fall away from sickness and improper or sub-standard care and treatment. At the same time, they have met more new friends and they only got acceptance from their close relatives. They did not stop to take care of one another . At this time, their friends who were leaders had tried their best to search for new source of information, which would be useful for their friends.

At this point, they had an opportunity to know people and organizations working on AIDS. For example, we had a chance to know Camillian Social Centre Rayong, the Eastern Network for People Living with HIV/AIDS, Raks Thai, Medicin sans Frantiere. This was a good opportunity for them to get support and capacity building in different areas of skill. For example, Raks Thai provided them with financial support and training on process of project management and teamwork. Medicin sans Frantiere provided them with information and guidelines for proper healthcare . The Eastern Network for People Living with HIV/AIDS gave training on capacity building and additional information on healthcare, human rights, counseling and home visitation, which they could apply right back home. They did not only got capacity building, but also met new friends who were leaders from other groups who were members of me network. They had more chances to talk and share ideas on me work, which they could develop and apply with their group.

Apart from following up friends in their group, they also have got training on teamwork, worked with leaders and members of other groups, such as paramedic team. They have got information on opportunistic infections and anti-retroviral therapy , as well as being able to organize training process to provide information to their friends. A dream team has been formed with skill on planning goals and objectives and operational guidelines, group management. This team supported local group in planning and identification of solution to operational problems. A team of resource persons provided advice that they could use to organize training process and shared operational process to resource persons. A team of AIDS communication has got information on AIDS and how to live with people living with HIV/AIDS, as well as change of attitude for organization of training and promotion of understanding in communicating AIDS with local communities and different groups.

In short, we can sum up the organising process as follows:

  1. At me beginning, mere was a public policy to support establishment of local groups of people living with HIV/AIDS in all district hospitals, but mere was no serious or ongoing implementation.
  2. People living with HIV/AIDS met with discrimination when going to hospital.
  3. They met other people living with HIV/AIDS and started to talk with one another on health, care and treatment. Some people did not want to speak about their problem. They started to make friends.
  4. They started to get together and identify common problems.
  5. They were from me same neighborhood and visited and gave encouragement to one another.

Their common problems are listed below.

  1. Crisis in life - HIV infection.
  2. No medicines, expensive medicines.
  3. No medical treatment
  4. Stigmatization
  5. Rejection
  6. Discrimination

They have identified their leaders and have gotten the following from their gathering.

Their main actions were addressed to me following issues.

Their activities included me following: Training on healthcare , human rights, counseling and home visit. Advocacy on public policies, Centre for Comprehensive and Continuous Care, buyer club, social security system, national health security system, reproductive health, free trade agreement, patents. Support team, dream team, human rights team, communication team.

Public Campaign and Advocacy

On this occasion, they have worked with me Eastern Network in campaign to advocate favorable policies and their implementation, because they had an opportunity to get broader and deeper information on current situation of people living with HIV/AIDS. They, together with other leaders, share a common opinion mat working with people living with HIV/AIDS alone was not sufficient to address AIDS problem. To be successful, all parties concerned should take part in this solution. An important part in addressing AIDS problem was to advocate public policies and their materialization. In this regard, me Eastern Network has taken part in advocacy and public campaign for policies and action plan. In me past, me Eastern Network has taken part in advocacy for the benefit not only of people living with HIV/AIDS, but also people in general. For example, me Eastern Network played a key role in mobilizing 50,000 signatures to propose a bill on national health security system. It was also involved in organising a buyer club and centre for comprehensive and continuous care, which aims at motivating and monitoring the government to manufacture and promote administration of medicines enough to meet demand of people living with HIV/AIDS. This action also helped motivate development of service provision of state agencies on me same standard. The Eastern Network went even further to campaign on trade related aspects of intellectual properties (TRIPS) and free trade agreement (FTA) to motivate me government to realize the significance of human life and a need for survival of me majority of people. It also participated in a campaign on voluntary blood test to motivate provision of comprehensive information, acceptance of people living with HIV/AIDS to employment and living together .

Centre for Comprehensive and Continuous Care (CCC)

Centre for Comprehensive and Continuous Care (CCC) is a clear operational guideline of people living with HIV/AIDS whereby they play a key role in working closely with hospital personnel in providing healthcare services to people living with HVI/AIDS, starting from planning, implementation, monitoring and evaluation. The purpose is to monitor me pace of mutual operation to develop an operational system and quality of healthcare service.

In eastern Thailand at present, there are 8 CCCs in 4 provinces, i.e. Rayong Hospital in Rayong Province, Kaeng Hang Maew, Na Yai Arm, Song Phi Nong and Pong Nam Ron Hospitals in Chantaburi Province, Khao Saming and Trad Hospitals in Trad Province, and Wattana Nakhon Hospital in Srakaew Province. This is a more proactive work on follow-up of positive friends, co-ordination, and referral in case there is a need for solution. As a result, people living with HIV/AIDS have greater access to care and treatment with better quality.

CCC has been introduced because people living with HIV/AIDS working in hospitals had a common problem. They realized that there were still many people living with HIV/AIDS who have not access to care. Some of them have got me treatment, but improper and not continual. The clear public policy initiated by public sector was not implemented. On me part of both service providers and clients have never talked about their problems on clear and proper treatment. On me other hand, me care of fellow people living with HIV/AIDS helped them to realize that in order mat the people living with HIV/AIDS would really have better quality of life, good health with no sickness, accurate, update and applicable information, and access to standard care are not enough. They also need development of spirituality, which must be provided side by side with other services. Hence, a concept of centre for comprehensive and continuous care was introduced and implemented by people living with HIV/AIDS.

The process has begun with me following steps.

  1. There was discussion on overall situation in each area at national level to search for guidelines on common solution. The idea of centre for comprehensive and continuous care was introduced by me people living with HIV/AIDS and partner organizations engaged in AIDS work. The goal was clear mat people living with HIV/AIDS get proper and ongoing care according to standard of Ministry of Public Health. It was also advocacy for integration of anti-retroviral therapy in me national health security system.
  2. Then, the idea was presented to leaders at regional and local level and hospitals. The idea was further discussed with regard to role of leaders to see if they could do it and how. This was a significant challenge for us. At the end of 2002, mere were 6 groups of people living with HIV/AIDS in me eastern provinces decided to start pilot project.
  3. They have mutually formulated clear operational goals.
  4. They have developed a plan, human resources and clear target group, especially readiness of local hospitals since our emphasis was on participatory operation.
  5. A clear project and action plan was formulated.
  6. There was ongoing capacity building for both regional and local teams.
  7. There was a mutual lesson drawing to help personnel reflect and review their work, as well as presenting their experience to advocate public policies.

In me course of operation, the following problems were encountered.

  1. The work with local hospitals was not effective. There was still lack of participation in planning and decision-making.
  2. Some leaders were not used to bureaucratic work, especially writing report and record.
  3. There was a gap between leaders and hospital personnel, which put pressure on leaders who had to listen to their mentors who were hospital personnel.
  4. Leaders could not find solution for some cases, making them to be quite desperate.

Given me above problems, they have come up with me following solutions.

  1. Present report of accomplishments to hospital personnel.
  2. Take part in planning and implementation with leaders.
  3. Promote and motivate co-ordination with several desks of hospitals.
  4. Provide case conference for leaders.
  5. Observe personality and mood of leaders and hospital personnel.

Gender Role

In general, men have more rights and roles in society and family than women do. At present, women have started to play greater role in society and demand equal rights. In regard to AIDS, they are more vulnerable and powerless to protect and prevent themselves.

In me field of AIDS solution, me situation was similar. There was an initiative to set up a working group on women and AIDS to address the problem from both women and men perspective. Women learn to use condom properly to prevent themselves , for they realize mat prevention is not the responsibility of men alone, but a mutual responsibility. This working group also introduced a bill on reproductive health in me hope mat women and men would understand their basic right to have "good reproductive health". At the moment, this bill is the process of presenting to the Cabinet for its approval.

At the local level, the work of the Eastern Network has raised some important questions.

  1. How to empower women to negotiate for their safety, reduce motther-to-child transmission without taking anti-retroviral medicines. The government launches campaign on pre-natal blood test. In reality, couples do not realize the importance of this problem, because blood test to check HIV is something a waste and expensive. Majority of Thai people is in me low-income group.
  2. How to promote mutual acceptance between men and women. In local groups of people living with HIV/AIDS, women can accept their being infected more man men do. The evidence of this is a bigger portion of membership in new groups is woman. Most of them are housewives. When talking about problems in families, women would say mat their husbands asked them to join me group to check if membership is a secret and how the group operate, for men fear mat they would be affected if mere was no secret. Therefore, me ratio between women and men is not balance.
  3. How to foster co-operation to reduce spread of HIV. There is a need to raise awareness mat the spread of HIV is a problem of all people and there is an urgent need for cooperation to address this problem.

These are questions that we have to solve together . They seem to be prevention more man care of people living with HIV/AIDS. The Eastern Network and local groups can also solve these problems, because group members are also living communities and can provide them with knowledge and pose questions to them. Women play a crucial role in prevention in local communities. Women members and leaders in me Eastern Network have made great contribution in a vaccine test project by providing knowledge AIDS to community members, especially young people.

Buyer Club

At me beginning, anti-retroviral medicines were absent, or insufficient and expensive mat people living with HIV/AIDS did not have access to or could not afford. Furthermore, they did not have information or knowledge on usage, dosage, side effects and solution. Therefore, there was an urgent need to provide cheap available anti-retroviral medicines for them. The Eastern Network realized mat they could not wait for me government to take action, for human life could not wait. They have decided to take action to arrange for greater access to anti-retroviral therapy. It has done the following steps.

  1. The eastern network of people living with HIV/AIDS and Thai Network of People Living with HIVAIDS, MSF and ACCESS have held a consultation to identify means and way to help HIV positive people to have access to ARV at a fair price. There was sharing from the participants mat in me Philippines mere was a group of HIV people who wanted ARV medicines and got together to buy a considerable volume of ARV medicines at cheaper prices. They called their group as buyer club. Therefore, the participants decided to support establishment of a buyer club in Thailand and support network of people living with HIV to be responsible for personnel/group and office. There was also brainstorming on countries mat had cheap ARV medicines.
  2. The Eastern Network and Koh Kaew Association called for a meeting with a doctor in Rayong Hospital who has given medical treatment to people living with HIV with ARV medicines to learn about process and goal of buyer club. The doctor agreed with the idea and principle and expressed his willingness to give cooperation.
  3. The Eastern Network and Koh Kaew Association wrote a letter to me hospital director to ask for a meeting with him and to explain buyer club. The hospital director has invited concerned people to attend this meeting as well, including doctors, pharmacists, technicians, nurses, counsellors and finance offcers of Rayong Hospital. On this occasion, doctors and personnel of MSF also attended the meeting to give explanation and clarification on operational principles. They also expressed their willingness to join hands in tackling this common problem. The meeting concluded with agreement to support this buyer' club.
  4. A training workshop for HIV people who would work with the buyer club was organized with personnel of MSF as resource persons on ARV medicines, management and counseling on me use of ARV medicines, efficacy, side-effects, prices, and so on.
  5. There was close co-ordination, referral and follow-up between doctors and association of HIV people (buyer club).
  6. There was co-ordination with MSF on the use of ARV medicines, side effects, follow-up of me patients, and access to sources of cheaper medicines.
  7. At the beginning, the buyer club was operated from me national network of people living with HVI/AIDS. Later, Camillian Social Centre Rayong started this buyer club before transferring to Koh Kaew Association. Koh Kaew is in charge of getting prescriptions from its positive members, 15 days before they run out of the medicines, with cash. Koh Kaew also provides counseling to its members regarding dosage and side effects and other impacts, as well as monitoring and following up its members on ARV therapy.
  8. There was co-ordination with the national network of people living with HIV on delivery of medicines and movement of prices.
  9. There was dissemination of information to other people living with HIV and concerned organizations, including other associations of PHA and other PHAs interested to have access to ARV medicines and related information.
  10. There was advocacy demanding the government to allow parallel import of cheap anti-retroviral medicines, and individual import (with prescription).

The buyer club has yielded several outputs and impacts mat benefit people living with HIV/AIDS.

  1. ARV medicines are gradually cheaper, from 20,000-35,000 Baht per month down to 8,000 and 5,000 Baht per month.
  2. ARV medicines are available for people living with HIV/AIDS.
  3. People living with HIV/AIDS learned to use ARV medicines and their side effects.
  4. Hospital is more motivated to provide quality service to people living with HIV/AIDS.
  5. They have better quality of life.
  6. Government Pharmaceutical Organisation (GPO) manufactures ARV medicines locally.
  7. Opportunistic infection and ARV medicines are covered by social security and national health security systems.

Lessons Learned

1. People Living with HIV/AIDS Dare Not Open Themselves, Society Still Does Not Accept.

When me first case of AIDS patient was reported in Thailand, there was widespread fright and rejection. The main cause is me negative information publicised by state agencies to prevent HIV pandemic. However, through hard work of many concerned parties, including me public sector, society has developed more positive attitude, but not yet positive enough. It is even worse for people living with HIV/AIDS themselves . There is still problem with these people. They dare not go to seek medical services, because society at large still cannot accept and they are too shy about their own risk behaviours. Although they have more information and know where they can get the services, it does not mean that they will go for the services. They are too shy about their personal behaviour, such as homosexuality, casual sex, drug addiction, and so on. When they dare not go for treatment for fear that their secret would be disclosed, which would affect their families who would face rejection, stigmatization and unemployment. They are also afraid mat their families cannot accept them. The work to promote better understanding, positive attitude and acceptance in society at large and me people living with HIV/AIDS needs to continue and in a more intensive manner.

2. Need To Believe that AIDS Can Be Treated.

Another important reality mat me Network found from its work is that healthcare of positive people would be possible and effective only when all parties concerned have accurate and proper information. More important is mat the positive people need to be confident that AIDS can be cured and they have to believe in me treatment when they are in me ongoing treatment process. Service providers should be confident in the services and treatment. Caretakers should have good understanding and confidence in me treatment, and are ready to take care that people living with HIV/AIDS would get proper treatment. If everyone believe that AIDS can be cured, it will be helpful for their physical, mental and social conditions. They should have me courage to get treatment with assistance and support from their community. Information should be provided side by side with building confidence. Information provision is not a final answer. Knowledge that medicines are available does not mean that people living with HIV/AIDS would have access to care, since mere are also other factors involved, such as encouragement, caretaker or concrete example that AIDS can be cured and they can live together with others in society. When leaders or hospital personnel show mat sickness can be cured and they could get the help, me caretakers and people living with HIV/AIDS would have more confidence. Furthermore, mere is also a need to build confidence that early treatment at initial stage can reduce me chance of deem to a considerable degree. When they know they are positive, they should plan to have ongoing treatment and care from the very beginning. They do not have to wait until they are very sick before getting me treatment, which will be more diff~cult.

3. There is a need for advocacy, demand, pressure, monitoring

AIDS problem is related to infection and spread of HIV, risk behaviours, prevention, treatment of opportunistic infections and ARV therapy , as well as promotion of proper attitude in society, which is an important task at national level. It is also inevitably connected to international level. Given this situation, me government has a significant role to play in providing support to every aspects of me work on AIDS. Good and effective policies for me benefit of people living with HIV/AIDS and society as a whole are necessary. In this regard, people living with HIV/AIDS must get together and mutually demand for necessary policies. Yet, policies alone are not enough. There is also a need to motivate and monitoring for actual ongoing implementation of me policies, otherwise solution of AIDS problems would be useless and fail at the end. In addition, people living with HIV/AIDS alone do not have enough power. They have to work with popular and public sectors, joining their hands to promote, support, demand and monitor public policies seriously and intensively. Organisation and mobilisation among people facing problems along sometimes is not enough. They need to work with other people who have good understanding of mat particular problem and have a role to play in addressing such problem, although they are not people directly affected by the problem. Examples of these are the case of shortage of DDI, the Access to Care (ATC) project, and so on. Another example is the problem of national health security system for Thai people. Mobilisation of 50,000 signatures of Thai people affected by health problem to propose a bill on national health security system could be more powerful.

4. The work with people living with HIV/AIDS should involve different aspects, and must be integral.

AIDS is a social phenomenon at international, national, regional, provincial and community level. Spread or infection is caused by several factors and diverse causes, starting from national development policies, social value system, modern culture, capitalism and neo-liberalism, communication, entertainment, unemployment, migration, tourism, sex industry, and so on. These factors are closely related to one another. Effective solution to AIDS at a macro level must be done with holistic approach. The work has to address every aspect of the problem, without leaving any aspect untouched; otherwise AIDS solution would fail. For people living with HIV/AIDS, their problems are not limited only in physical sickness, but also psychological. They are desperate and hopeless, while society and community do not accept them. This situation affects their living in community, economic condition, jobs, health, family, children and so on. The work with people living with HIV/AIDS cannot be done only in one aspect, but has to involved other aspects as well, such as human rights, change of attitude, occupation, information, knowledge and understanding on healthcare, stop spreading me virus to others, and so on. The work should be inclusive and ongoing, and requires serious and genuine co-operation from all parties.

5. Human Beings Can Be Developed.

Throughout several years of its work, me Eastern Network had to be in touch with people living with HIV/AIDS all me time. The Eastern Network found that most of them are grassroots people with no knowledge and understanding in care, and they do not talk or share knowledge and information to others. In addition, most of them dare not open themselves, even in a limited circle. They are ordinary people who are not rich, and most of them have low education, are wage earners or farmers. However, they can still understand and learn about AIDS, healthcare , and can share this knowledge to others. For example, leaders can provide counseling service, do home visitation, give knowledge to communities, and negotiate with people involved in me solution. Whoever understand the issue and have opportunities, can always develop. People living with HIV/AIDS in each area have learned from their groups and Eastern Network through seminars, training on different topics and general assembly, which helped them to understand their role in communicating with their fellow members and community to have a better understanding, change their attitudes and prevent infection and spread of me virus. The work of the Eastern Network has proved mat all human persons, even an ordinary villager, can develop.

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