Feasibility Study Report Greater Involvement of People Living with HIV/AIDS in Viet Nam (UNV/UNAIDS GIPA Initiative in Viet Nam) June 2004 Feasibility Study Area : Ha Noi, HCMC, Quang Ninh, Hai Phong, An Giang Feasibility Study Period : March – April 2004 Team : Nguyen Cuong Quoc; UNAIDS GIPA Officer Tran Thi Hai; UNV GIPA Development Team Translator Brenton Wong; UNV GIPA Project Development Specialist Bethlehem Attfield; UNV GIPA Project Development Specialist The views expressed in this report are those of the authors and do not necessarily reflect the views of UNAIDS or United Nations Volunteers. Feasibility Study Report, Greater Involvement of People Living with HIV/AIDS in Viet Nam Table of Contents: List of Acronyms ............................................................................................................................... 3 Introduction ........................................................................................................................................ 4 Methodology ...................................................................................................................................... 4 Analytical Framework ....................................................................................................................... 5 Limitations of the Methodology ........................................................................................................ 5 The National Strategy on HIV/AIDS ................................................................................................. 5 Report on the Situation in each Geographical Area........................................................................... 6 Ho Chi Minh City ............................................................................................................................... 6 Hai Phong .......................................................................................................................................... 9 Quang Ninh ...................................................................................................................................... 10 Ha Noi .............................................................................................................................................. 12 An Giang .......................................................................................................................................... 13 General Findings .............................................................................................................................. 15 Summary of Findings ....................................................................................................................... 16 Feasibility Analysis for a UNV/UNAIDS GIPA Project ................................................................. 18 Appendix 1: List of people involved in GIPA development study (1/3/2004 – 20/4/2004)............ 21 Appendix 2: List of documents consulted ....................................................................................... 25 Appendix 3: List of people who participated in the project development advisory group .............. 27 UNV 2 UNAIDS Feasibility Study Report, Greater Involvement of People Living with HIV/AIDS in Viet Nam List of Acronyms AIDS : Acquired Immune Deficiency Syndrome ARC : Australian Red Cross ARV : Anti retro-viral BCC : Behavior Change and Communication CDC : Center for Disease Control DSEP : Department of Social Evils Prevention DoH : Department of Health DoLISA : Department of Labor, Invalids and Social Affairs GIPA : Greater Involvement of People living with HIV/AIDS HCMC : Ho Chi Minh City HIV : Human Immunodeficiency Virus IDU : Injecting Drug Users IEC : Information, Education and Communication IUNV : International United Nations Volunteer MoH : Ministry of Health MoHA : Ministry of Home Affairs MoLISA : Ministry of Labor, Invalids and Social Affairs MSM : Men having Sex with Men NGO : Non-Government Organisation OI : Opportunistic Infections PLHA : People Living with or Affected by HIV/AIDS PMTCT : Prevention of Mother-to-Child Transmission STI : Sexually Transmitted Infection SW : Sex Worker TB : Tuberculosis NUNV : National United Nations Volunteer UNAIDS : Joint United Nations Programme on HIV/AIDS UNV : United Nations Volunteers VCT : Voluntary Counseling and Testing WHO : World Health Organization UNV 3 UNAIDS Feasibility Study Report, Greater Involvement of People Living with HIV/AIDS in Viet Nam Introduction Greater Involvement of People Infected and Affected by HIV/AIDS (GIPA) is a concept, which involves theoretical and practical principles to involve People Living with HIV and AIDS (PLHA) in various development activities at all levels. UNV has implemented GIPA projects in a number of different countries in Africa, the Caribbean, and in South-East Asia. These UNV GIPA projects extend volunteer opportunities for PLHA to promote GIPA. Based on positive reviews of UNV pilot GIPA initiatives, it was decided to conduct a feasibility study in Laos and Viet Nam to assess the enabling environment for a UNV GIPA initiative and to promote a regional exchange of information and experiences. UNAIDS decided to cooperate in conducting this study in Viet Nam. Methodology Over a 6-week period, the GIPA feasibility study team met with several stakeholders. These stakeholders (See Appendix 1 for a detailed list) included a mix of international and local NGOs, government offices and institutes, service providers, mass organisations and PLHA groups. The team also attended WHO’s 3x5 mission presentations and a workshop conducted by the POLICY Project on various activities with regards to GIPA. While analyzing the context of Viet Nam, the team kept in mind the conditions needed to support GIPA, and looked at the types of activities already generated around HIV/AIDS. The team reviewed GIPA research documents and activity reports, and other UNV GIPA projects’ progress reports and experiences. They also exchanged ideas and experiences with the volunteers of the UNV GIPA projects in the region. (See Appendix 2 for a list of documents consulted) In order to give key stakeholders and potential partners the opportunity to integrate their experiences and play an active role in this project development process, UNV set up a project development advisory group (See Appendix 3 for the list of participants in this group). This group met five times during the 9-week feasibility study and project development period. Considering resources and time constraints, the project development advisory group decided to limit the scope of the study to only five provinces. The selection criterion for the provinces was highest number of people living with HIV/AIDS. UNV 4 UNAIDS Feasibility Study Report, Greater Involvement of People Living with HIV/AIDS in Viet Nam Analytical Framework The implementation of GIPA requires several enabling conditions: No stigma and discrimination towards PLHA Political will, understanding and support of GIPA Access to treatment and services for PLHA Institutional and organizational capacity Capacity of PLHA to participate and become involved Willingness of PLHA to become involved This study, therefore, assessed the above conditions in order to identify suitable intervention strategies to enable GIPA in Viet Nam. Limitations of the Methodology The time frame for the study and project development was short. The team only met a limited number of people from various organisations, mostly on one-off visits. Therefore, impressions were formed from these limited sources of information and may not always be entirely representative. The National Strategy on HIV/AIDS On 17 March 2004, the Prime Minister approved the National Strategy on HIV/AIDS Prevention and Control in Viet Nam up to 2010 with a vision to 2020. The strategy highlights the need to provide care and support to people living with HIV/AIDS and to fight stigma and discrimination. The strategy also specifically mentions the need to involve people living with HIV/AIDS in HIV/AIDS prevention activities. Priority areas for the national HIV/AIDS prevention and control in the upcoming years are: Strengthening Behavioral Change Communication; coordination with other related programmes to prevent and reduce of HIV infection; Strengthening harm reduction intervention approaches; Strengthening counselling, care and treatment for PLHAs; Strengthening the management, monitoring, supervision and evaluation capacities of the National AIDS Programme. UNV 5 UNAIDS Feasibility Study Report, Greater Involvement of People Living with HIV/AIDS in Viet Nam Report on the Situation in each Geographical Area Ho Chi Minh City HCMC with 14,7451 recorded cases, has the highest number of people living with HIV/AIDS in Viet Nam. The prevalence rate is 0.3%. The majority of the registered people living with HIV/AIDS are poor and also from the Intravenous drug use (IDU) and Sex Worker communities. Stigma and discrimination HIV/AIDS awareness and knowledge is still low amongst the city’s poor – this fuels stigma and discrimination and also facilitates further spread of the disease because of lack of understanding. IDU and unprotected sex work (SW) exacerbate the problem. There is widespread discrimination by health care workers (a few PLHA from different groups had raised this). The majority of the PLHA population lack basic knowledge of the disease, and most still think they have not long to live, leading to a lack of motivation and action and a loss of will to function and live (this was mentioned by NGO workers, PLHA themselves and also some health care workers). This self-stigmatisation prevents many from participating in self-help groups and increases the tendency to isolate from normal social activities. Understanding and support of GIPA The participation of PLHA is recognised and supported by the health authorities. However, PLHA participation is limited to the implementation level only. The authorities expressed the belief that all of the activities should be managed by a professional government employee like in the Friends Help Friends Club model. The establishment of clubs or groups of PLHA is encouraged, but they should register under other organisations with legal status and good profile. Access to treatment and services: The health system is overburdened and under-equipped and cannot cope with the needs of PLHA. There are about 50 beds set aside at a hospital for patients at the last stage of AIDS. However, equipment, facilities and medicines are limited. 1 All figures on HIV/AIDS in this report are from Ministry of Health records at the end of January 2004. UNV 6 UNAIDS Feasibility Study Report, Greater Involvement of People Living with HIV/AIDS in Viet Nam There are no effective follow-up actions once patients are tested positive – many do not return to hospitals for treatment because of the way in which their cases were handled by the health care system. Patients are treated for opportunistic infections (OIs) as and when they occur – most PLHA said that they had little or no knowledge of OIs, and this has an impact on self care. Seldom is psychosocial support or counseling given within the health care setting. Some support is given by NGOs, but this is limited to providing space for meetings and some information sharing. There were no home-based care initiatives. Some PLHA have been trained in the principles of home-based care, but they have not been able to employ their skills for various reasons. PLHA are largely left to their own devices in maintaining their health. There is a pilot Day Care Centre at District 8, supported by WHO. It basically provides some treatment of OIs and does not generate many other meaningful activities for the patients, so clients only turn up for health check-ups or for treatment of acute or chronic condition. During our visit, the centre was empty, except for the workers there. The team can only assume there are no strong links between the day care centre and the community it serves, and perhaps no sense of ownership of the project by PLHA. There are some prevention of mother-to-child transmission (PMTCT) initiatives, but generally antenatal service is weak and in particular for mothers living with HIV. Use of Nevirapine for PMTCT is not consistently being used by hospitals. Treatment guidelines also need to be updated. Lack of knowledge about mother-to-child transmission maybe a reason for some mothers abandon their babies. The numbers are growing and the authorities have difficulties to cope with this issue. There are also attempts to enlist families to help in care and support, but for various reasons (fear; lack of information; limited access to centres for IDUs and SWs) these attempts are usually not very successful. There are also some activities involving peer educators. These seem to work within the bounds of their own communities (i.e. HIV+ IDUs or SWs), but they are still largely stigmatized by the general population. UNV 7 UNAIDS Feasibility Study Report, Greater Involvement of People Living with HIV/AIDS in Viet Nam Currently overwhelmed with work, DoLISA staff does not have sufficient capacity to carry out the mandate of the department. They are, however, willing to expand and improve care and support activities, if resources and capacity building are made available. Staff at centres for IDU and Sex Workers (05/06 centre) need training in HIV/AIDS issues and counseling skills. They also have to deal with abandoned or orphaned children, and women in the centre who are not willing to reintegrate in society, but they are not trained to do so. Some inmates are trained as peer counselors. There were some concerns about high-risk behaviors such as injecting drugs or men having sex with men in those centers. Network Development There are many pilot projects and groups working on HIV/AIDS, coordination of projects by stakeholders is not very visible – programmes seem to run parallel to each other, and with the exception of very few, interaction between these programmes are usually incidental and on the initiative of individuals. Also, the number of PLHA these pilot projects served is quite small and limited to certain districts of the city. To address the gap in provision of services and information for PLHA, informal groups of PLHA spring up here and there, and network within their own districts and with other groups from outside their districts. These groups are mostly for psycho-social support and members are recruited by word-of-mouth. A limited number of people are reached by these groups; information exchange is not very efficient and coverage not wide. They have limited access to information and resources. Friends Help Friends clubs do provide some services – peer counseling, dissemination of information, and some psycho-social support. However, they are under-funded – only 12 board members are given a small allowance that has not increased since the group started in 1995. There are other limitations of the group – many are from IDU and SW populations – which tends to alienate those not from these populations; no strong leadership and initiative; limited technical capacities; not strongly supported by Provincial Health authorities (lack of resources, attitude that PLHA are not able to govern themselves and their activities need to be managed by health officials). There has not been much thought given to fund-raising activities to bring in muchneeded funds for their activities. The members themselves feel frustrated as they are hampered by UNV 8 UNAIDS Feasibility Study Report, Greater Involvement of People Living with HIV/AIDS in Viet Nam the lack of budget and the low priority given to their activities by the health authorities. The structure of the group is also top-down – they are managed by and take orders from a doctor, and there is not much support for PLHA-initiated actions. Hai Phong With 7,058 cases, Hai Phong has the 2nd largest number of people living with HIV/AIDS in the country, and a prevalence rate of 0.4%. Stigma and discrimination The evidence of stigma and discrimination was well reported in a study by the International Center for Research on Women. PLHA have to face stigma and discrimination in different levels in different settings ranging from being avoided in public places to being treated differently in health care settings. Understanding and support of GIPA The health authorities are very receptive of the idea of PLHA participation. In fact, there a few PLHA who participate in HIV/AIDS activities. These activities, however, are small scale and sometimes merely tokenistic. Access to treatment and services: The focus by health authorities has been on prevention since the early 90s – Care and treatment have been paid attention very recently and not much capacity or resources to do care and support initiatives. There is an informal referral system at the anonymous Voluntary Counseling and Testing (VCT) centres for those tested positive to social support and treatment providers. Patients receive treatment for common opportunistic infections (OIs) – anti-retrovirals (ARVs) are still unaffordable. Health institutions are limited in their capacities as infrastructures are weak. There is some care for people in their own communities. Many patients are reluctant to visit the hospitals and there are no centres that can give care and treatment to them. The closest approximation is a site run by World Vision at Do Son, a resort town by the sea. However the World Vision site concentrates on sexually transmitted infection (STI) detection and treatment for female workers in UNV 9 UNAIDS Feasibility Study Report, Greater Involvement of People Living with HIV/AIDS in Viet Nam the tourist and hospitality industry – care and support of PLHA is not a priority nor are they equipped to adequately provide for such services. PLHA are mobilized to participate in various care and support activities available – PLHA support groups supported by INGOs, etc. However, all of these are small-scale projects with limited budgets and activities, reaching only a handful of PLHA. Many inmates at centres for IDU and sex workers were tested for HIV if they are suspected to be infected. However, they are only informed of their status just before release. Some HIV/AIDS training is provided to the staff by the department of health, but this is not frequent, nor adequate enough. Official letters are sent to the department of health at the wards where inmates will be released to – so that they can provide care and support. However, there is not much follow-up action, if at all, according to the rehab centre authorities. Some returnees to the centres who know their status help others in the centre. However verbal methods are not enough and other forms of IEC materials need to be developed and provided. There is no core group of peer educators. Network Development There are some support groups of PLHA. The team met with 2 PLHA who are members of Hoa Phuong Do Group – a self-support group with 6 members. These 2 PLHA also are members of the Mother and Wife Club, which is organised by the AIDS authorities for wives and mothers of PLHA, and are members of Hai Au Club. This maybe an indicator that there are not many people living openly with HIV/AIDS and that there is overlap between these groups in terms of membership. Quang Ninh Quang Ninh has the 3rd highest number of people living with HIV/AIDS in the country with 6,863 reported cases, and a prevalence rate of 0.6%. HIV/AIDS intervention in the province is largely focused on HIV prevention and harm reduction. PLHA are largely from the IDU community. Some IDUs are enlisted to do prevention and harm reduction work – community outreach with IEC materials, by various groups (Red Cross, Family Health Club, Friendship Club). Much of their activities that the team witnessed revolved around harm reduction work – but no one dealt directly with their HIV status nor care and support issues. There is no person living openly with HIV in UNV 10 UNAIDS Feasibility Study Report, Greater Involvement of People Living with HIV/AIDS in Viet Nam these groups, but people who manage these groups made it clear to us that the groups concentrate on prevention work and there are no resources for additional activities. Stigma and discrimination There is some support from the Women’s Union for families of people living with HIV/AIDS. However, they deal indirectly with the issues – by trying to work through families of the infected – and this may create more barriers and challenges in reaching the PLHA. The efforts are wellmeant, but ineffective, as families are encouraged to deal with care and support issues without being given any practical knowledge – and this brings about feelings of helplessness. Focus has thus shifted to the lack of knowledge and feelings of powerlessness – which ultimately results in other coping mechanisms, which include denial and behavior patterns supporting this, reinforcing a self-perpetuating cycle of stigma. Understanding and support of GIPA Health authorities and those working in the various prevention projects still seem to be grappling with the concept of empowering PLHA – which starts by the act of first providing them with information and knowledge. There is a lack of knowledge amongst PLHA, caregivers and volunteers of coping with the disease and because of this, there is a fear of managing PLHA – fear of getting infected, fear that when people are told of their sero-status they may react violently, etc. This also means the needs of PLHA are not being addressed; there lacks of a continuum of care and support services; there are various levels of denial and various levels of stigma; there is no real understanding of GIPA. Access to treatment and services: Treatment and services for PLHA is very limited in public hospitals due to lack of resources. A study of the Public Health School in Hanoi reportedly found that a number of private doctors in Quang Ninh prescribed the ARV mono-therapy for PLHA. The LIFE-GAP project has just began to implement care and treatment for PLHA. Network Development The Red Cross there has helped form 4 groups of HIV+ people, 6 members in each. These groups are under the guidance of the department of health. However, due to lack of resources and trained UNV 11 UNAIDS Feasibility Study Report, Greater Involvement of People Living with HIV/AIDS in Viet Nam staff, these groups are largely dormant and members meet on their own initiative. Sometimes people are referred to VCT centres to test. Some vocational training given, but membership is not constant and changes as people die or move away. It is doubtful if these groups are functioning as the Red Cross could not facilitate the research team to meet with any PLHA, but time may also have been the constraining factor. Ha Noi With 6,267 HIV/AIDS cases recorded, Ha Noi ranks the 4th province in Viet Nam with highest number of people living with HIV/AIDS, and a prevalence rate of 0.2%. Stigma and discrimination The Fatherland Front, using their wide network and structure, are beginning to deal with HIV/AIDS related stigma and discrimination at provincial and community level, but recognize that they may lack the skills and knowledge at present. There is no clear strategy to deal with it as yet. Their legal position to act as a liaison between the public, the party and the state is strategic in promoting GIPA. Understanding and support of GIPA Many non-government HIV/AIDS prevention and management projects are at pilot phase. Of late, some international organizations and research institutes (E.g. Policy, Care, ARC, ISDS) had been conducting research and follow-up activities to enable operationalising of GIPA in Viet Nam. Some of these researches were conducted with the involvement of PLHA themselves. Access to treatment and services: The ESTHER Project just started their ARV access programme in April and attempts to provide ARVs to 100 patients at Dong Da and Saint Paul hospitals. Treatments for OIs can be accessed at various hospitals. Projects who work with health care workers mentioned that the workers had expressed fears in working with PLHA as they lack the knowledge and practice of universal precautions in order to protect themselves. Also, many had expressed concern that they did not have counseling skills, as many patients required it and they were not able to provide this service. There was also the issue of handling and care of bodies of dead patients – no guidelines are given. UNV 12 UNAIDS Feasibility Study Report, Greater Involvement of People Living with HIV/AIDS in Viet Nam Australian Red Cross (ARC) also plans to start a counseling service at Dong Da hospital, working with patients, to provide information and some psycho-social support. The research team was unable to access entry to 05/06 centre in Ha Noi. However the Department of Social Evils Prevention (DSEP) in Ha Noi expressed interest in future involvement of the centre ‘s staff in care and support, given capacity building and resources are made available. DSEP are also looking for capacity building at their training college, to equip their trainees with knowledge of HIV/AIDS and PLHA care and support. Network Development The formation of a few PLHA support groups has been possible in Ha Noi under the umbrella of NGOs. The strongest and largest PLHA support group in Ha Noi is the Bright Future Group. This group has been formed under the umbrella of CEPHAD, a local NGO, and has been receiving support from a few INGOs. Four PLHA peer support groups have also been formed by the Ha Noi Chapter Red Cross, with financial assistance from ARC. ARC’s financial assistance for this group will end in June 2004. Medical Committee Netherlands Viet Nam is also providing inputs to a pilot support group for HIV+ mothers in Dong Da district. The Ministry of Home Affairs (MoHA) is working on a manual on ‘how to form self-help groups – for people with disability’, which should in the future be made available for PLHA. However this project has been delayed for 18 months already and there are concerns that there may be further delays. An Giang An Giang is the 5th province with highest numbers of people living with HIV/AIDS, with 4,895 registered cases, and a prevalence rate of 0.2%. It has a profile that is different from the national one – more women are infected (29% infected women in An Giang versus 14% for national figures) and most of the cases are detected late (63.9% are at the AIDS stage). Within 6 months of their diagnosis, the majority of the patients pass away. The province shares a 98km border with Cambodia and is a popular place for returning sex workers from Cambodia, who sometimes set up businesses in the province. UNV 13 UNAIDS Feasibility Study Report, Greater Involvement of People Living with HIV/AIDS in Viet Nam Stigma and discrimination Stigma and discrimination is still widely spread in the society. PLHA are usually isolated and even avoided by members of their family. PLHA who participate in OI treatment programs do not talk with each other. However, stigma and discrimination in health care setting may be less, as, at least, this was the case in the health care centre visited by the research team. Understanding and support of GIPA Health care workers say they are still grappling with the idea of the inclusion of PLHA in their projects and programmes – there are no models available for them to study except the Friends Help Friends model. Most admit that the idea of the active participation of PLHA is still new to them. So while rooms are made available for IDUs and Sex Workers to meet for regular gatherings, no attempts have been made to do the same for PLHA. Access to treatment and services: There is a programme developed by the health department, which provides care, and counseling for PLHA in the community. They estimate that 65% of the PLHA are covered under this programme. Health care workers visit PLHA monthly at their homes, or if they are afraid of being identified, they opt to meet outside. Since 2001, all patients get 2 free chest X-rays a year for TB detection (14% of HIV+ patients have TB). Since 1996, all TB patients have been tested for HIV. There are 8 VCT sites (7 from ADB project, 1 from CDC Life GAP). CDC LIFE-GAP site sees about 150 clients a month and 90% return for their results. Condoms and needles are distributed at these centres. There are also peer support groups of IDUs and Sex Workers who go into the community and provide information cards, needles and condoms. These groups also provide information and referrals to pharmacists for needles, VD clinics, etc. Those tested HIV+ are given free cotrimoxazole2 each month. There have been attempts at PMTCT using lamivudine, but because of various reasons (women seldom visit for antenatal care, late diagnosis and confirmation of HIV status, etc.) they have not been very successful. The Women’s Union also collaborates with the health department to provide some care and support services to patients. 2 Prophylaxis for opportunistic infections UNV 14 UNAIDS Feasibility Study Report, Greater Involvement of People Living with HIV/AIDS in Viet Nam Network Development There are no self-help groups of PLHA. Those who go to the VCT centres to get their monthly supply of cotrimoxazole do not interact, and many seem to be avoiding each other or raising the issue of their common sero-status. A handful of them have participated in a workshop for PLHA in HCMC organized by Policy Project. However, after that, one overdosed on drugs and one passed away because of ill health. The others did not have any follow up actions. General Findings The Capacity of PLHA The capacity of PLHA who are openly living with HIV/AIDS and participating in HIV/AIDS activities remains a constraint to their involvement. The majority of PLHA came from IDU and SW communities whose members have a generally limited educational background and hardly any vocational or professional experience. None of the PLHA who were interviewed by the research team could speak English which limits their interaction in international fora and networks. The HIV/AIDS activities in which PLHA are actively involved include giving talks in small meetings or providing basic home care. All of these activities are managed and organised by health authorities or other organisations. This limited involvement may be due to a lack of understanding of GIPA or due to the capacity constraints of PLHA. One example is a study conducted by 5 NGOs in 2003 which included the participation of PLHA as a main component. However, the participation of PLHA was limited to interviewing and reaching out to other PLHA. PLHA could not contribute much to the design of the study or the writing of the report. The capacity of PLHA self-help groups is equally limited as illustrated by the following quote:“ Many organizations would finance us to do something, but we do not know what to do.” (PLHA in Hai Phong) The specific learning needs of individual PLHA and particular self-help groups in the different geographical areas covered by this study was not assessed due to time constraints, but would need to take place prior to providing intensive capacity building support. UNV 15 UNAIDS Feasibility Study Report, Greater Involvement of People Living with HIV/AIDS in Viet Nam Information on employment services for PLHA Access to employment is one of the major concerns of PLHA. The number of people living openly with HIV/AIDS who are in any form of employment is very small. This may be a result of stigma and discrimination, which prevent PLHA who have jobs to disclose their HIV-status. On the other hand, the people living openly with HIV usually come from IDU and SW communities and most of them had not been formally employed in the past. Income generation is one of main concerns of the PLHA met by the research team. However, no employment related interventions for PLHA were identified in the five provinces. PLHA’s attitude towards GIPA All of the PLHA met by the team expressed their willingness to be involved in improving their lives and the image of PLHA. Summary of Findings General issues 46.5% of all reported HIV/AIDS cases in Viet Nam are in these five provinces. However, the number of people living openly with HIV/AIDS is very small. Many of the projects are in the pilot phase, and have no widespread impact. Major concerns for PLHA are: Access to treatment, accurate information, care and support Extensive stigma and discrimination among health providers Access to economic means Access to a system of acquiring information, counseling and experience sharing without scrutiny or discrimination There is a huge gap between the policies/directives at central level and what is really happening at community level. This can be attributed to various reasons – lack of capacity and knowledge, stigma and discrimination; large work burden; lack of resources; policies are not supported by recommendations or follow-up actions. UNV 16 UNAIDS Feasibility Study Report, Greater Involvement of People Living with HIV/AIDS in Viet Nam HIV/AIDS is largely viewed as a health problem, but this is gradually changing and is reflected in the recent “Directive of the Prime Minister on Strengthening HIV/AIDS Prevention and Control” which calls for a wider response that involves the other ministries and mass organisations. Stigma and discrimination Prevention work is targeted at IDU and sex worker communities (social evils) increases stigma and encourages complacency amongst general population Mass prevention campaigns focus on family values and play on messages of fear adds moral judgment into the equation and increases stigma. Self-stigma is wide-spread among PLHA. Understanding and support of GIPA Some research has been conducted on stigma and discrimination and groundwork for GIPA – most conclude that the concept is new here and needs to be developed in tandem with support for the formation of PLHA self-help groups. Some community mobilization is evident, but organisations at community level lack basic understanding of GIPA – the approach is usually paternalistic and not participative. Access to treatment and services: Some support services provided by the authorities at the provincial, city and commune levels, but usually these are under-resourced and staff are not adequately trained. The CDC funded government project (LIFE-GAP) exists in all proposed areas. Various activities include; anonymous VCT aimed at persons concerned about HIV risk, peer education programmes and harm reduction efforts, support for HIV out-patient clinic, PMTCT linked with antenatal services, and OI treatment. Network Development Lack of conducive legal framework to support the formation of PLHA groups. Criminalisation of sex work and drug use is a major barrier to reach and involve these populations at a meaningful level. UNV 17 UNAIDS Feasibility Study Report, Greater Involvement of People Living with HIV/AIDS in Viet Nam Capacity of PLHA The capacity of people who are openly living with HIV/AIDS to become involved in HIV/AIDS activities is very low. Limitations of communication and language skills are easily noted and a more detailed capacity assessment is needed to identify learning needs in areas such as knowledge about HIV/AIDS care and treatment, counseling skills, peer education skills, organizational development, leadership skills, problem solving skills, management skills etc. Feasibility Analysis for a UNV/UNAIDS GIPA Project Need Most organisations working on HIV/AIDS prevention and management recognize the important contribution people infected and affected by HIV/AIDS can make in the response to the epidemic. However, the Vietnamese approach to involvement of PLHA is often tokenistic. In order for PLHA to actively participate, there is a need to create a space within society for their involvement. This begins with clear avenues to access information for PLHA once they are tested positive which are currently rare in Viet Nam. Interest From speaking to NGO workers, health care workers and PLHA themselves, there are indications that many PLHA with adequate capacity are currently not coming out because of stigma. The other reason PLHA are passive is because there are no programmes or services that meet their needs. Health department staff and those working at the rehab centers are asking for support in order to provide better services to PLHA. There are many HIV/AIDS initiatives, but among the people involved there is support for more GIPA activities. Strategy The analysis identified 5 main areas where GIPA can be operationalised in Viet Nam: 1. Addressing stigma and discrimination: Reducing PLHA related stigma and discrimination would lead to a better quality of life and their increased participation in development and social activities. UNV 18 UNAIDS Feasibility Study Report, Greater Involvement of People Living with HIV/AIDS in Viet Nam 2. Increasing the understanding of GIPA: This is essential to build the enabling environment and create the political will to promote GIPA. A proper understanding and implementation of GIPA will consequently improve the services available to PLHA and their families. 3. Capacity Development of PLHA: PLHA need to be given skills and knowledge to actively and effectively participate in the process of improving their lives and that of other PLHA. 4. Enabling PLHA and family to access treatment and other services: PLHA cannot be expected to contribute to services for other PLHA if there own needs are not met. 5. Network development of PLHA groups: By forming self-help groups and promote networking, PLHA can better access information and access peer and community support, and also be empowered through a collective identity. Partnerships There is a need to look at a strategy that supports and links with ongoing programmes and initiatives. PLHA, with appropriate capacity building support, can be the focal point for people who want to access care and support services, and other services (legal aid, vocational training, etc.). The following organisations expressed interest to coordinate their existing care and support activities with the UNV GIPA project: DoH DoLISA CDC – Life GAP Project Fatherland Front ESTHER Project Viet Nam Red Cross SMARTWorks Women’s Union at local level ARC UNICEF FHI WHO POLICY Project Medical Committee Netherlands CARE UNV 19 UNAIDS Feasibility Study Report, Greater Involvement of People Living with HIV/AIDS in Viet Nam PLHA, serving as UN Volunteers, should be based at existing HIV/AIDS projects and assist in referring PLHA to the appropriate services and networks. Conclusion Because of the aforementioned findings and along the identified strategy, the recruitment of PLHA as UN volunteers to create an enabling environment for GIPA seems feasible in Viet Nam. UNV 20 UNAIDS Feasibility Study Report, Greater Involvement of People Living with HIV/AIDS in Viet Nam Appendix 1: List of people involved in GIPA development study (1/3/2004 – 20/4/2004) No. 1. 2. 3. Name Seija Kasvi Project Officer, Health and Nutrition Section Cao Viet Hoa, MD Project Officer, Health and Nutrition Section Clare Murphy Technical Advisor 4. Tung , Lan 5. Mary L Kamb, MD Director 6. Do Anh Nguyet Project Manager 7. Nancy Fee Country Coordinator Mika Niskanen Advisor/Liaison Officer Paul Toh Regional GIPA Advisor Nguyen Thi Bich Dao, MD Director 8. 9. 10. 11. 12. 13. 14. 15. 16. 17. 18. Tran Quoc Tuan, MD Head of Department of Infection Disease Nhat , Khanh Tran Viet Trung Deputy Director Le Thu Ha Project Executive Officer Nguyen Hoang Ha Programme Officer Masami Fujita Medical Officer, HIV/AIDS and STI Nguyen Van Kinh Deputy Head of AIDS Division David Stephens Resident Advisor 19. Nguyen Phuong Mai Program Officer 20. Nguyen Tien Phong Head, Poverty and Social Development Cluster UNV Organization and Contact Address UNICEF skasvi@unicef.org Province Ha Noi UNICEF cvhoa@unicef.org Ha Noi Australian Red Cross, 15 Thien Quang Street claremurphy@hn.vnn.vn Bright Future Group vingaymaits@yahoo.com CDC Vietnam Office US Embassy, 6 Ngoc Khanh Street KambML@state.gov COHED (Center For Community Health and Development) 127 Lo Duc street Tel: 04-9721452 UNAIDS Viet Nam feen@unaids.org UNAIDS Laos PDR mika.niskanen@undp.org UNAIDS SEAPICT toh.unescap@un.org Dong Da Hospital, 192 Nguyen Luong Bang, Ha Noi Bichdao.nguyen@laposte.net Dong Da Hospital, 192 Nguyen Luong Bang, Ha Noi Tel: 5115039 DSEP, MoLISA Dept of Social Evils Prevention, MoLISA tnxh@fpt.vn GTZ-HIV/AIDS/STI Controal Component: Number 4 Tran Hung Dao Street, Ha Noi hha@netnam.vn ILO ha@ilohn.org.vn WHO Western Pacific Regional Office PO Box 2932 (United Nations Ave) 1000 Manila, Philippines fujitam@wpro.who.int MoH Ha Noi POLICY Project 6 Phan Chu Trinh 9361922 davidstephens@fpt.vn Poverty and Social Development Cluster of UNDP nguyen.thi.phuong.mai@undp.org UNDP phong@undp.org.vn Ha Noi 21 Ha Noi Ha Noi Ha Noi Ha Noi Ha Noi Ha Noi Ha Noi Ha Noi Ha Noi Ha Noi Ha Noi Ha Noi Ha Noi Ha Noi Ha Noi Ha Noi UNAIDS Feasibility Study Report, Greater Involvement of People Living with HIV/AIDS in Viet Nam No. 21. 22. Name Bill Tod Programme Director Patrick Burke Project Coordinator 23. Do Thanh Nam 24. Nguyen Thi Bich Van, MD Director 25. Tran Minh Gioi Programme Officer, HIV/AIDS and School Health Daniel Levitt Health and Humanitarian Program Manager 26. 27. 28. 29. 30. Nguyen Thiep Deputy-Secretary General Of VN Red Cross Tran Thu Thuy Head of Health Care Department Le Truyen Presidium Member, Permanent Bureau Member Nguyen Hong Ha Programme Coordinator 31. David Payne Co-Director 32. Nancy Jamieson Senior Technical Officer 33. Nguyen Hong Ha 34. Caitlin Wyndham Project Manager Disability Employment Project Bui Van Toan Country Director 35. 36. Pauline Oosterhoff Senior Health Advisor UNV Organization and Contact Address Save The Children (UK) billtod@scuk.org.vn SMARTWorks Vietnam, Room 12B, 4th Floor, Horison Business Centre 40 Cat Linh, Dong Da, Ha Noi, Vietnam Tel: +844 736 5240 Fax: +844 736 5243 The Center for Harm Reduction Office E2, La Thanh Hotel, 218 Doi Can, Ha Noi Mobile: 0913309451 The Center For Public Health And Development (CEPHAD): Number 4, House 33, Tan Ap Street, Phuc Xa Ward, Ba Dinh District, Ha Noi ttgdskcd@hn.vnn.vn UNESCO, 23 Cao Ba Quat Street, Ha Noi tm.gioi@unesco.org.vn Province Ha Noi Ha Noi Ha Noi Ha Noi Ha Noi USAID US Embassy, 6 Ngoc Khanh Street Dlevitt@usaid.gov LevittDM@state.gov VN Red Cross 68 Ba Trieu Street Tel: 822-9971 VN Red Cross, 68 Ba Trieu Street Tel: 822-9971 Vietnam Fatherland Front 46 Trang Thi Street Ha Noi Disability Forum ATS Hotel, 33B Pham Ngu Lao St, Ha Noi forum@hn.vnn.vn VUFO-NGO Resource Centre Le Thanh Hotel, 218 Doi Can, Ha Noi director@ngocentre.netnam.vn FHI Vietnam Country Office Asia Pacific Division 30 Nguyen Du street, room 301 njamieson@fhi.org.vn Disability Forum Health Volunteers Overseas, ATS Hotel, 33B Pham Ngu Lao, Ha Noi, Tel: (04) 933 0329, Email: thuan_hvo@yahoo.com Viet-Nam Assistance for the Handicapped 4th Floor, 131 Bui Thi Xuan, Ha Noi caitlin@netnam.vn Viet-Nam Assistance for the Handicapped 4th Floor, 131 Bui Thi Xuan, Ha Noi vnah-Ha Noi@hnn.vnn.vn Medical Committee Netherlands Vietnam; 1a-B5-Nam Thanh Cong, Dong Da, Ha Noi Tel: (84-4)835-9005/776-1117 Fax: (84-4)776-0655 Mob: (84-4)09-04-222-845 Pauline_oosterhoff@yahoo.com Ha Noi 22 Ha Noi Ha Noi Ha Noi Ha Noi Ha Noi Ha Noi Ha Noi Ha Noi Ha Noi UNAIDS Feasibility Study Report, Greater Involvement of People Living with HIV/AIDS in Viet Nam No. 37. Organization and Contact Address COHED @ 127 Lo Duc stress. Tel: 9721452 UNFPA Van Phuc Diplomatic Compound Province Ha Noi 38. Name Do Anh Nguyet Project Manager Duong Van Dat 39. Misha Coleman CARE in Viet Nam 25 Hang Bun St., Ba Dinh Dist., Ha Noi mcoleman@care.org.vn ESTHER Project Population Center, National Economic University, 207 Giai Phong, Hai Ba Trung distr., Ha Noi loenzien@ird.fr MoH Ha Noi MoHA Ha Noi ActionAid HCMC, 16/3 Quang Trung Street, Ward 10, Go Vap Dist. HCMC, Tel: 08-894 6616, 0913 636939 actionaidhcm@hcm.vnn.vn AIDS Committee, HCM City Provincial Department of Health of HCMC pachcmc@mail.saigonnet.vn AIDS Program: 54/32 Le Quang Dinh, Binh Thanh District, HCMC Home Tel: 08.8416158 Fax: 08.8416158 Aidsprogram@Hcm.Vnn.Vn AIDS Program (VICOMC): 54/32 Le Quang Dinh, Binh Thanh District, HCMC aidsprogram@hcm.vnn.vn AIDS Program (VICOMC): 54/32 Le Quang Dinh, Binh Thanh District, HCMC aidsprogram@hcm.vnn.vn Anonymous HIV Testing Site hc-ats@hcm.vnn.vn Anonymous HIV Testing Site hc-ats@hcm.vnn.vn Health Center of District 8 82 Cao Lo St. –4 W, Dist. 8, HCMC HCM City Anonymous HIV Testing Site C/o Center for AIDS Prevention Studies, University of California doctordonn@hotmail.com CARE in HCMC, 0913912350 thuannguyen@care.org.vn Children Supporting Model Supported By SCF (UK) HCM City DOLISA of HCM City delisa@hcm.fpt.vn nguyencanminh903166@yahoo.com Friends Help Friends Club HCM City Health & Social Sector Advisor 40. Myriam de Loenzien Demographer and sociologist 41. Deputy head of AIDS Division 42. Nguyen Ngoc Lam Director of NGO Department Tran Thi Nhieu Southern Senior Program Officer 43. 44. 45. Le Truong Giang Vice Chairman, Director of Standing Office Nguyen Thi Kim Dung Assistant 46. Nguyen Thanh An Social worker 47. Pham Thanh Van 48. Nguyen Quang Trung 49. Mai Doan Anh Thi 50. Ngo Thi Minh Tam, MD Director 51. Donn Colby, MD 52. Nguyen Anh Thuan Director of Health Programs Project Officer 53. 54. Nguyen Van Minh Vice Director 55. Members UNV 23 Ha Noi Ha Noi Ha Noi HCM City HCM City HCM City HCM City HCM City HCM City HCM City HCM City HCM City HCM City UNAIDS Feasibility Study Report, Greater Involvement of People Living with HIV/AIDS in Viet Nam No. 56. Name Ngo Thi Thanh Tam Director Organization and Contact Address Health Center of District 8,Cum Head of WHO-Sponsored Day Care Center Province HCM City 57. 58. Son Heli Mikkola Project Officer – Child Protection SC UK, 26 Dang Tat Street, HCMC UNICEF HCMC, 115 Nguyen Hue Blvd 5, Dist. 1 hmikkola@unicef.org HCM City HCM City 59. UNICEF HCMC, 115 Nguyen Hue Blvd 5, Dist. 1 tcbinh@unicef.org Red Cross of Quang Ninh Province HCM City Quang Ninh Provincial Health Bureau Quang Ninh 62. 63. Tran Cong Binh Asst Project Officer – Child Protection Tran Thai Tuan Vice Chairman Vu Thi Thu Thuy (Dr.) Vice Director Life Gap Project Officer Head of Friendship Club VCT center, Life Gap project FHI – Friendship Club, Cam Pha Town Quang Ninh Quang Ninh 64. Head of Family Health Club Quang Ninh 65. Vu Xuan Thai Deputy Director Tran Thi Thanh Thuy Vice Director, Chief of Provincial Aids Standing Office Do Viet Dzung Project Assistant Women Union – Family Health Club, Cam Pha Town 06 Centre, 50 Nguyen Van Hoi, Cat Bi, Hai Phong Department of Health of Hai Phong No. 38 Le Dai Hanh Street World Vision Haiphong Liaison Office Do_viet_dzung@wvi.org Hai Phong World Vision Haiphong Liaison Office Pham_tien_dzung@wvi.org VCT Center – Life Gap Project An Giang Preventive Medicine Centre 12B Le Loi, Long Xuyen City, An Giang Tel/fax: 84-76-854141 aidsaganh@hcm.vnn.vn Life Gap Project 41 Chu Van An-Long Xuyen Hai Phong 60. 61. 66. 67. 68. 69. 70. 71. Pham Tien Dzung Project Officer Life Gap Project Officer Mai Hoang Anh, MD Vice Director VCT UNV 24 Quang Ninh Hai Phong Hai Phong Hai Phong An Giang An Giang UNAIDS Feasibility Study Report, Greater Involvement of People Living with HIV/AIDS in Viet Nam Appendix 2: List of documents consulted Exploratory Research Using GIPA Approach in Cantho Province FHI (Feb 2004): Vu Song Ha, MD, MSc; Vu Ngoc Bao, MD, MPH; Lai Kim Anh, MD; Nguyen Danh Lam, MD HIV/AIDS-related Stigmatization in Chinese Society: Bridging the Gap between Official Response and Civil Society Evelyne Micollier Positive Perspectives: A participatory research with PLHA Australian Red Cross & Vietnam Red Cross (Dec 2003) Directive of the Prime Minister on Strengthening HIV/AIDS Prevention and Control The Government of the Socialist Republic of Vietnam National Strategy on HIV/AIDS Prevention and Control in Vietnam for the period 2004-2010 with a vision to 2020 – Draft 5 National Committee for AIDS, Drug, Prostitution Prevention and Control Support for the involvement of People Living with HIV/AIDS in Viet Nam: A case study on the situation and needs of PLHAs in Ha Noi; Proposal for coordination and plan of support (first draft) WHO; Anong Boonchuey Exploratory Rersearch using GIPA approach in Cantho Province FHI; Vu Song Ha, Hoang Tu Anh, Vu Ngoc Bao, Lau Thi Kim Anh, Nguyen Danh Lam Positive Perspectives Research (March 2003) CARE (funded by Ford Foundation) Moving Forward: Operationalising GIPA in Vietnam; Final Study report, October 2003 CARE/POLICY A Cultural Approach to HIV/AIDS Prevention and Care: Ho Chi Minh City, Quang Ninh Province UNESCO/UNAIDS Proposal on GIPA for Kyrgyzstan UNDP/UNV UNV Project Document: Greater Involvement of People Living with, and Affected by, HIV and AIDS (GIPA) in Cambodia (CMB/01/01) UNV UNV Project Document: Greater Involvement of People Living with HIV/AIDS (GIPA) in Indonesia (INS/03/V01) UNV/UNDP/Spiritia Foundation Indonesia Final Evaluation of the UNV Support to People Living with HIV/AIDS Project in Malawi and Zambia Jane N. Mulemwa, PhD Final Evaluation of the UNV Support to People Living with HIV/AIDS Project in the Carribean (Cuba, Haiti, Jamaica, Dominican Republic, Guyana, and Trinidad and Tobago) Jane N. Mulemwa, PhD UNV 25 UNAIDS Feasibility Study Report, Greater Involvement of People Living with HIV/AIDS in Viet Nam From Principle to Practice; Greater Involvement of People Living with or Affected by HIV/AIDS (GIPA) UNAIDS The Denver Principles GIPA Initiative in South Asia Report UNDP Situational Analysis of Care and Protection for Children Infected and Affected by HIV in Ho Chi Minh City (Final Draft, May 2002) Jamie Uhrig [Ho Chi Minh City AIDS Bureau/Save the Children (UK)] HIV/AIDS Stigma and Discrimination: An Anthropological Approach Division of Cultural Policies and Intercultural Dialogue, UNESCO The Declaration of Commitment on HIV/AIDS: United Nations Special Session on HIV/AIDS UN Keeping the Promise: Summary of the Declaration of Commitment on HIV/AIDS United Nations General Assembly Special Session on HIV/AIDS 25-27 June 2001, New York UNAIDS Understanding HIV and AIDS-related Stigma and Discrimination in Vietnam Khuat Thu Hong & Nguyen Thi Van Anh (Institute for Social Development Studies, Ha Noi); Jessica Ogden (International Center for Research on Women, Washington, DC) APN+ Position Paper 1: AIDS-related Discrimination and Human Rights (January 2004) APN+ APN+ Position Paper 2: GIPA (January 2004) APN+ Vietnam’s Proposal to the Global Fund to Fight AIDS, TB and Malaria The Government of the Socialist Republic of Vietnam (Apr 2002) Decision of the Prime Minister on Approval of the National Strategy on HIV/AIDS Prevention and Control in Viet Nam up to 2010 with a Vision to 2002 The Government of the Socialist Republic of Vietnam (Mar 2004) The Socioeconomic Impact of HIV/AIDS in the Socialist Republic of Viet Nam (June 2003) POLICY Project Literature review: Challenging Stigma and Discrimination in Southeast Asia: Past Successes and Future Priorities Joanna Busza, MSc. (Population Council, Horizons) HIV/AIDS-related Stigma and Discrimination: A Conceptual Framework and an Agenda for Action Richard Parker and Peter Aggleton with Kathy Attawell, Julie Pulerwitz, and Lisanne Brown (Population Council, Horizons) International Law, National Policy and Legislation for the Prevention of HIV/AIDS and Protection of Human Rights of People Living with HIV/AIDS in Vietnam (Final Report, November 2003) Ho Chi Minh National Political Academy/CARE International supported by USAID through POLICY Project UNV 26 UNAIDS Feasibility Study Report, Greater Involvement of People Living with HIV/AIDS in Viet Nam Appendix 3: List of people who participated in the project development advisory group No. Name Organisation Contact Email 1. Nguyen Hoang Ha (Mr.) Programme Officer International Labour Organization 48-50 Nguyen Thai Hoc, Ha Noi Tel: 7340902/3/5 ext. 202 Fax: 7340904 Mobile: 0913510411 ha@ilohn.org.vn 2. Tran Minh Gioi (Mr.) Programme Officer Tel: 747 0275/6 Fax: 747 0274 tm.gioi@unesco.org.vn 3. Hoang Hai Chau (Mr.) HIV/AIDS and School Health UNESCO Office 23 Cao Ba Quat, Ha Noi Care International 25 Hang Bun Ba Dinh Ha Noi, Viet Nam Tel: 716 1930 Fax: 716 1935 hhchau@care.org.vn 4. Dong Duc Thanh (Mr.) Project Officer Care International 25 Hang Bun Ba Dinh Ha Noi, Viet Nam Tel: 716 1930 Fax: 716 1935 Mobile: 0912289 423 ddthanh@care.org.vn thanhdd76@yahoo.com 5. Misha Coleman Care International 25 Hang Bun Ba Dinh Ha Noi, Viet Nam Tel: 716 1930 Fax: 716 1935 mcoleman@care.org.vn 6. David Stephens (Mr.) Resident Advisor Tel: 9361922 Fax: 9362194 davidstephens@fpt.vn 7. Jason Eligh (Mr.) Project Coordinator POLICY Project 6 Phan Chu Trinh Hoan Kiem Ha Noi, Viet Nam UNODC 72 Ly Thuong Kiet Ha Noi, Viet Nam Tel: 726 0130 Fax: 822 4931 jason.eligh@unodc.org 8. 9. Paul Toh (Mr.) Nguyen Cuong Quoc (Mr.) GIPA Officer 10. Bethlehem Attfield (Ms.) UNV GIPA Project Development Specialist 11. Brenton Wong UNV GIPA Project Development Specialist 12. Tran Thi Hai (Ms.) Translator UNV UNAIDS SEAPICT UNAIDS 4th Floor, Room 405 44B Ly Thuong Kiet, Ha Noi UNV, GIPA Development 25-29 Phan Boi Chau Ha Noi UNV, GIPA Development 25-29 Phan Boi Chau Ha Noi UNV, GIPA Development 25-29 Phan Boi Chau Ha Noi Tel: 9343417 ext. 105 Fax: 9343418 toh.unescap@un.org quocnc@netnam.vn Tel: 9421495 ext. 286 Fax: 9422267 Mobile: 090 4137791 bbattfield@yahoo.com Tel: 9421495 ext. 286 Fax: 9422267 Mobile: (+65) 90250810 brenton@pacific.net.sg Tel: 9421495 ext. 286 Fax: 9422267 Mobile: 091 2630984 tranthihai71@yahoo.com 27 UNAIDS Feasibility Study Report, Greater Involvement of People Living with HIV/AIDS in Viet Nam No. Name Organisation Contact Email 13. Nancy Fee Country Coordinator Tel: 9343417 Fax: 9343418 feen@unaids.org 14. Nguyen Thi Hoang Yen (Ms.) Communications Assistant Koen Van Acoleyen UNV Programme Officer UNAIDS 4th Floor, Room 405 44B Ly Thuong Kiet, Ha Noi, Vietnam UNV 25-29 Phan Boi Chau Ha Noi, Viet Nam Tel: 9421495 ext. 282 Fax: 9422267 nguyen.thi.hoang.yen@undp.org UNV 25-29 Phan Boi Chau Ha Noi, Viet Nam Tel: 9421495 ext. 146 Fax: 9422267 koen.acoleyen@undp.org 15. UNV 28 UNAIDS