|Comfort and Hope: Six Case Studies on Mobilizing Family and Community Care for and by People with HIV/AIDS (Best Practice - Case Study) (UNAIDS, 1999, 98 p.)|
HIV in Malaysia
The first case of HIV in Malaysia was detected in 1986. Up to the end of 1996, the total cumulative number of HIV infections reported was 19 019. Out of this number, 580 were AIDS cases.
The major mode of transmission of HIV is through sharing of HIV-infected injection equipment among injecting drug users (IDU): this accounts for 77.4% (or 14 713 cases) of the total cumulative number of infections. Sexual transmission accounts for 5.9% (or 1 116 cases). (These figures probably contain a data collection bias since active HIV screening tests are carried out among injecting drug users incarcerated in the drug rehabilitation centres and prisons, whereas the number of people from other sectors of the population coming forward voluntarily for testing is still low.)
Of the total HIV infections reported, 83.4% occur among those in the 20 - 49 years age group and 95.7% of the infections are among males.
The national AIDS programme budget includes provision of drugs, including antiretrovirals. Public health officers, health clinics, and the rural health clinics are involved in provision of care for AIDS patients, along with district hospitals and general hospitals.
Facts about Malaysia
Total population (1995):
20 140 000
Infant mortality rate
(per 1 000 live births):
Life expectancy (years):
Per capita GNP (US$):
Surface area (km2):
13 states and
2 federal territories
The capital is Kuala Lumpur
Ikhlas is a Malay word that means sincere
The Ikhlas community centres drug user programme was created in 1991 by an NGO called Pink Triangle Malaysia. Operating in a drop-in centre and through outreach workers, it works with the intravenous drug user (IDU) population in a Chow Kit, a poor community of Malaysias capital city, Kuala Lumpur.
Chow Kit is a bustling, traffic-congested area of Kuala Lumpur. Its ethnically mixed population is mainly composed of working class Malays, Chinese, Indians, and a significant migrant population of Indonesians. Chow Kit is a shopping and business area, with a thriving retail and petty trade, but it is also a red-light district. Several of its side streets are lined with seedy brothels, and are home to drug users. According to one estimate, there are about 8000 IDUs, sex workers, and transsexuals living and working in the area.
Each month, an average of 1040 contacts with clients are made by programme staff and volunteers. Contacts include such activities as providing basic medical care and food, handing out and discussing information on HIV and harm reduction, and making referrals to other care and support services.
From the beginning, the goal of Pink Triangle Malaysia in creating the drug user programme was to serve the IDU population of Chow Kit by:
· providing information on health, harm reduction, and HIV itself;
· providing care and support, including medication, nutrition, shelter, employment, and psycho-social support; and
· advocating for IDUs needs and concerns.
Reaching out from one marginalized community to another
Pink Triangle was already an experienced organization in 1991, being the first NGO in Malaysia to work at the community-level on HIV and sexuality issues. It had begun to work on behalf of a marginalized community - the gay community of Kuala Lumpur - in 1987, shortly after the first cases of AIDS were diagnosed in the country. By the early 1990s it was well established, with its own HIV education and support programmes. One of the best known is Positive Living, a support and care project especially for people living with HIV.
Today, Pink Triangle has 18 staff and about 100 volunteers involved in its HIV prevention and support programmes. One of the first services provided by Pink Triangle, and which is still being provided, is a telephone information and counselling service addressing issues of HIV and sexuality. The funding for its programmes came from various sources - AusAID, HIVOS, the European Commission, the Malaysian AIDS Council, corporate bodies and its own fund-raising activities such as theatre shows, sale of merchandise (e.g. T-shirts, badges).
As their work evolved, members of Pink Triangle Malaysia were strongly aware of the fact that the gay community was not the only marginalized group of people who were especially vulnerable to HIV. They identified groups such as injecting drug users, transsexuals and sex workers as particularly vulnerable. This was borne out by government statistics demonstrating the increasing number of HIV infections in Malaysia, particularly among IDUs.
According to official statistics, sharing of HIV-infected needles and syringes among injecting drug users accounted for almost three-quarters of the total number of infections. In contrast, sexual transmission caused less than ten percent. Little information was available about infection rates among transsexuals and sex workers, but Pink Triangle guessed that they too had high infection rates. (This guess has been borne out by the number of HIV-positive transsexuals and sex workers who have made contact with Pink Triangle. The official reported figure for HIV-positive female sex workers in the country is 393, as of 31 July 1997. No official statistics are available for transsexuals.)
Encouraged by their success among gay men, Pink Triangle Malaysia resolved to do something about the vulnerability of these other marginalized groups. The result was the drug user programme, based in an area of Kuala Lumpur known as Chow Kit.
Pink Triangle Malaysia recognized the importance of proceeding cautiously and systematically. Volunteers began by making contact with drug users and consulting them about their needs.
Having learned a great deal from its own organization and continued operations since 1987, Pink Triangle Malaysia based its work on the following principles:
· trusting relationships had to be established with the IDU community;
· the IDU community had to be consulted about what they wanted and needed;
· the immediate, basic needs of the IDU community had to be addressed before HIV education would take place;
· care and support services had to be provided in safe spaces and be client-centred (that is, concentrate on meeting the needs of the client);
· members of the IDU community could be motivated to take action to address their vulnerability to HIV/AIDS, and could participate actively in the project according to their own capacities;
· supportive relationships with other affected communities and concerned parties had to be established and maintained.
These principles continue to guide the project today, more than five years after its birth. Even before the first care and support work was undertaken, Pink Triangle applied the first three principles in order to understand their intended client group.
Establishing relationships with the IDU community
The IDU community is not an easy one to get to know. IDUs in Chow Kit form close-knit peer groups or comradeship. For example, one group that has stopped shooting drugs may exclude people who are still shooting drugs.
Fortunately, however, prior to the start of the drug user programme, certain volunteers of Pink Triangle Malaysia had already established contact and developed a good relationship with several members of the IDU community in the Chow Kit area. These contacts had been formed through the volunteers work with the gay community there.
Consultation with the IDU community
Through the initial contacts, an informal needs assessment was carried out among IDUs in Chow Kit. This was accomplished through outreach and discussion with the drug-using population in the area, who were consulted about the needs and concerns of the community.
The informants were visited on their terms, in places where they felt most comfortable, including shooting galleries and meetings on the street. Key informants were chosen during the outreach activities, based on their knowledge of the IDU community and on their contacts in Chow Kit. They included the so-called IDU doctors (themselves IDUs) who help other IDUs inject drugs for a fee, and who were identified as key agents of change. Demographic data was collected using a questionnaire. Later on, Ikhlas used the same techniques to create project components especially for transsexuals and sex workers.
Addressing the client groups priority needs
The informal needs assessment gave the Pink Triangle volunteers a clear sense of what IDUs in Chow Kit saw as priorities for improving their lives. These priorities were extremely basic, emphasizing the extreme marginalization and vulnerability of the IDUs:
· basic medical care;
· childrens welfare; and
· obtaining identification papers and birth certificates.
Major elements of the project
Guided by the information obtained in the needs assessment, Pink Triangle moved to set up the major elements of the drug user programme. They were, and remain the Ikhlas community (or drop-in) centre, outreach services, and the ongoing motivation and participation of the IDU community.
The drop-in centre was conceived as a safe space in which many of the clients needs could be met efficiently but without intimidating them or making them feel unwelcome. It is located on one of the side streets in Chow Kit, not far from the brothels and where the IDUs spend much of their time. Its located in one of a row of three-storey shop-houses. The building is rented from a landlord. A variety of activities are carried out there, most of which reflect the original needs assessment.
Medical care and treatment is provided by para medics, with referrals to hospitals/drug treatment centres given as needed. Counselling and psychological support are also available.
As well as care and treatment, the drop-in centre has a strong education and prevention role to play. Information on harm reduction and on HIV and other STDs are available to anyone who want it. The centre also provides condoms and lubricant. Finally, the drop-in centre offers its clients a variety of services not specifically related to HIV or STDs, but which respond to their stated needs and priorities:
· bathroom/toilet facilities are provided so that clients can maintain basic hygiene (bathe, wash clothes, etc.);
· food is served;
· referrals to job placements are done.
Drug programme workers do not only work in the drop-in centre, waiting for clients to come in to them. It has always been clear that the project must seek out and support clients in their everyday living and working environment. In addition to encouraging the involvement of clients in the projects work, outreach is the most effective way to maintain first-hand understanding of peoples needs and problems.
Outreach workers, both staff and volunteers, meet clients at home, in bars or on the streets - wherever the clients are most comfortable. The outreach workers also make visits to hospitals and to drug rehabilitation centres. Among the services provided by these workers are:
· transporting clients to hospitals;
· assisting with getting identification papers, birth certificates.
This story was told by a drug programme volunteer:
It is very hard to build trust sometimes, but if it is done well it is something that is very strong. The programme didnt build trust among IDUs in one day - it took a long time. In fact, you have to keep building it, you can never just assume trust because youve been helpful in some way. But we see evidence of it under very tough circumstances sometimes, and thats how we know were on the right track.
We had one fellow I remember well, a guy who was a single parent. Now, Raju was both HIV-positive and addicted to heroin, so he had lots of problems. But as a parent his greatest need was to keep his job and shelter in order to care for his child. So thats what we helped him with: work and housing. For instance, we got him a job as a labourer through personal contacts of an Ikhlas volunteer, and also raised money for the deposit for his rented room.
There came a time when Raju had to go to jail, and knew he had to make arrangement for his kid. He had nowhere else to go, so he came to the staff and asked us to help to take care of his child while he was incarcerated. That was the kind of trust he had in us, or rather, the trust we had earned with him.
We found a place for the child, and it worked out fine. With Rajus approval, we are arranging for the child to be adopted.
Motivation and active participation of the IDU community
Motivation and participation of the clients was always a key element in the IKHLAS strategy, and has evolved as the project has gained acceptance in Chow Kit.
The process began with the members of the IDU community who were involved in the initial needs assessment and early consultations. They not only contributed their knowledge but also became more aware of their vulnerability to HIV/AIDS. This provided some with the motivation to get involved more actively, and the programme was ready with ways for them to do so.
As time went on, IDUs who became known to the project were recruited as community health outreach workers. This recruitment included training in HIV education, harm reduction approaches and facilitation skills. The training was provided by HIV educators/trainers and health care professionals from local hospitals.
There are many ways for clients to participate on a more basic level, and to take ownership of the project. For instance, clients are encouraged to take responsibility for the nutrition programme and maintaining the cleanliness of the drop-in centre. Under supervision from the staff, they handle the shopping for food, do the cooking, and clean the bathroom/toilet facilities. This not only helps the project itself by making it more cost-effective, but is part of the process of re-socialization and self-esteem-building among the clients.
An unexpected benefit from the interaction of clients with volunteers from hospitals, nursing schools, the corporate sector, and colleges in the programme is that it has stimulated some IDU clients to participate more actively in the programme. Apparently, the feeling of being accepted by people from the general community is important to these clients for their re-socialization and self-esteem-building.
Partnerships and alliances
Pink Triangle has always known that efforts to go it alone are not only difficult but usually ineffective. It has therefore made strong efforts to find allies and make common cause with a variety of groups and organizations outside the IDU population.
Other affected groups
The programme is aware of the benefits its experience can offer to other groups, and the benefits that can be gained from the experience of others. Therefore, it has always made an effort to be open to volunteers from other affected marginalized communities who have a shared concern and similar vulnerability such as the transsexual, sex worker, and gay communities. Members of these are recruited and trained to do outreach work, and to provide support in the drug user programme.
The power of self-esteem: Ruby educates the professionals
This story was told by a volunteer and illustrates the type of enabling, supportive environment that the project has worked to create:
Ruby passed away only a few months ago and we miss her greatly. In her 30s, she was a small, frail-looking but gutsy and lucid-thinking woman and an extremely warm personality.
Ruby was HIV-positive, an injecting drug-user and an early client of the drug programme. Despite her difficult circumstances, she always insisted that she had received so much from the project and she felt very strongly that she had to give something back. And she really did, in her own special way.
I remember when she was very ill with TB, and went into hospital. Well, she educated the hospital staff! A doctor told me afterwards that she raised hell during that one week she was there because staff were not giving services in an appropriate manner. Not treating people respectfully and gently. I asked her about it later on, and she said, I acted like that because I wanted people who come after me into that hospital to get better services. That was her way of giving something back.
Another time, we had a workshop on law and ethics and HIV, and Ruby was there. It was pretty soon after she got out of the hospital, having been cured of her TB. There were a couple of doctors from private practice attending the workshop, and one of them told the other not to sit beside Ruby because she might still be infectious. This lady should have known better, being a doctor. Anyway, Ruby let her have it.
I cant believe that this is happening in a workshop where were talking about ethics and HIV! she said. Im cured, Im recovered, SO I CANT SPREAD THE TB! And then she added, I see Im going to have to educate you professionals so you dont treat other people badly. And she did.
A great person. I think about her a lot.
To date, six persons have been recruited in this way. One of them is a gay student who decided to give up his tertiary studies to work on the programme. Staff greatly appreciate his language and street skills, which have proven very useful for outreach work.
Other social and medical organizations
The programme cooperates closely with all other organizations that can be of help to its clients. For instance, clients are frequently referred to drug treatment and rehabilitation centres, to other NGOs working with IDUS, to churches and to shelters. Such referrals go both ways, as many new clients come to the programme via referrals from these organizations. In addition, about 40 clients come to the Ikhlas drop-in centre daily.
Local hospitals regularly refer their IDU patients once they are able to leave institutional care. Finally, many other NGOs working in the field of HIV/AIDS refer their clients and their affected families to the programme when it is clear that they could benefit from our services.
The drug user programme could not do the job it does without donations - in-kind and cash from a variety of sources. Major donors include the European Commission (EC) and the Dutch agency HIVOS. Locally, great help has been received from:
· the Malaysian AIDS Council (MAC);
· theatre companies that have dedicated specific performances to the community centre. These have contributed not only funds but have given valuable publicity to their work. (A great deal of publicity was also generated a few years ago by the participation of Miss Malaysia in one of their events.);
· pharmaceutical and health-care companies that have contributed medicines and nursing materials (e.g. treatment drugs, gauze, bandages); and
· hotels and food manufacturing companies that have donated food to the nutrition service.
As well as gaining access to government services for clients and making its work better known, the programme cultivates relationships with a variety of government agencies for reasons of advocacy. In particular, its aim is to create awareness and understanding of the needs and concerns of IDUs and to stimulate change at the policy- and decision-making level. This includes work with the National Anti-Narcotics Task Force, drug rehabilitation programmes, the police and prison authorities. In particular, staff have facilitated HIV education and counselling training sessions with personnel in prisons and drug rehabilitation centres.
The project also maintains a close relationship with the Ministry of Health and hospital staff, from whom we receive the assistance of doctors to provide testing and counselling services at our drop-in centre.
Monitoring and evaluation
The mechanisms employed for monitoring and evaluating the work
· seeking programme beneficiaries feedback (stories);
· regular meetings for peer review and evaluation among clients, volunteers, and staff;
· monitoring referrals to and from other agencies; and
· obtaining feedback from affected families.
Strengths of programme
These various evaluation methods indicate that the main strengths of the programme are as follows:
· Client-centred: In the projects six years of operation, it has been able to keep the focus on what the clients want and need. There are probably many reasons for this, but an especially important one is that the project is structured so that the ongoing involvement and feedback of clients obliges staff and volunteers to keep this focus. Structurally, the programme is: community-based; located within the area where its clients live, work and congregate; and largely run by IDUs/persons with HIV/AIDS for IDUs/persons with HIV/AIDS.
· Ability to show real care and concern for clients: This is related to the previous point, but probably has more to do with recruiting. In particular, the concentration on immediate needs and the outreach component that meets clients in their own preferred places (homes, shooting galleries, street) provide clients with concrete evidence of concern.
· Peer support system: nobody can relate to an IDU living with HIV/AIDS in the same way as someone who shares the same challenges and the same lifestyle. Providing a space and a structure in which people talk, share experiences and problems, and receive both good information and positive advice, is key to effective work at the individual level.
· External relations: Development of a good working relationship with governmental agencies and NGOs has paid off in a variety of ways (described earlier).
· Fund-raising: the programme has been able to generate good support from Malaysias corporate sector, both in cash and in kind.
Weaknesses of programme
Weaknesses identified by monitoring and evaluation mechanisms include the following:
· Stress experienced by staff and volunteers: The work can be very intense emotionally. A high-risk, high-vulnerability population like IDUs presents special challenges. For instance, the fact that clients and colleagues get sick and sometime die is very hard. The personal and legal problems faced by clients inevitably affect the work of the project, and can get very complicated. The projects main way of dealing with such stress is to hold regular sessions among staff and volunteers for discussion of problems, ventilating and counselling.
· Volunteer recruitment: As in any difficult activity that is heavily dependent on volunteers, the programme has trouble getting interested and committed volunteers on an ongoing basis. One of its most effective techniques for recruiting has been to recruit drug users and ex-drug users from the community.
· Lack of management training: Better skills in management, administration, and so on are particularly necessary.
· Challenges to programme focus: Although the programme has been able to remain client-focused, it often faces internal debate on how much effort and resources should be devoted to the collective needs of IDUs versus the individual needs of clients.
· Treatment resources: Despite fund-raising success and good relations with outside agencies, the project frequently experiences difficulty in getting access to adequate treatment facilities and drugs for our clients. Pharmaceutical companies are regularly approached for treatment drugs and nursing materials, sometimes through the programmes hospital contacts.
· Police raids: Despite its efforts to maintain good relations with the police, the drop-in centre services are sometimes affected by police raids in the area. The project tries to deal with this problem through dialogue with the police at the decision-making level (i.e., not by trying to confront the police officers carrying out the raid but by speaking with their superiors).
Threats and opportunities
The programme, like the population it serves, often finds itself in a position of vulnerability. It is most vulnerable to the withdrawal of government support. While it has achieved a strong profile in its field and can count on help from many professionals and influential people, the overall tolerance and support by government for its work is volatile. A change in the head of a government agency, or the governments need to respond to political or religious pressure can result in support being reduced or even withdrawn. While the project continues to build its profile and cultivate all the relationships it can with other agencies, this vulnerability is simply part of its environment and will continue to be so.
At the same time, the time and effort spent building the programmes profile means that it currently has a highly visible platform from which to speak out. The project is well known to the media, who often give it sympathetic coverage. The project can speak both formally and informally with major players in the Government such as the Ministry of Health, Ministry of Home Affairs, and the Malaysian AIDS Council.
So long as it maintains this profile and these good relations, and so long as it continues to involve and work on behalf of the real needs of IDUs and persons with HIV/AIDS, Ikhlas community centre drug user programme will continue to make its contribution to Malaysian society.
For more information:
Executive Director, Pink Triangle
c/o P.O. Box 11859 - 50760 Kuala Lumpur, Malaysia
Tel. 60 3 441 4699/Fax: 60 3 441 5699
Other HIV/AIDS agencies and NGOs in Malaysia
The Malaysian AIDS Council (MAC), an NGO umbrella association, was set up in 1991 with WHO funding. It groups 22 members, although only a few are AIDS-specific. The Council is supported in part with funds from the Ministry of Health ($400 000 in 1994). Council members generally concentrate on the most vulnerable groups in Malaysian society: women and youth, migrants, IDUs, gay men, and commercial sex workers.
Besides the MAC, the National Council of Women Organization promotes AIDS activities among its affiliate members.
Other NGOs active in HIV work include:
· Tenaganita, a womens group working primarily with migrant workers, in industry, and with sex workers in selected areas of Kuala Lumpur;
· PENGASIH which runs a halfway house for IDUs in Kuala Lumpur;
· Positive Living, another Pink Triangle Malaysia project for people with HIV/AIDS;
· The Malaysian Red Crescent Society, which runs a youth peer education project relating to HIV and reproductive health;
· The Federation of Family Planning Associations of Malaysia;
· Community AIDS Service Penang;
· National Council of Churches.
Best Practice Criteria
The IKHLAS Project strongly illustrates the community mobilization value of participation by persons living with HIV/AIDS, and the resulting benefits in effectiveness and efficiency which are possible from being guided by such an ethical approach. In fact, the participation of infected persons from the IDU community is probably essential in order to reach this group, which is highly marginalized both socially and legally. The project illustrates UNAIDS best practice criteria in the following ways:
· Relevance: Since injecting drug use is the major form of transmission of HIV in Malaysia, the projects focus on IDUs is extremely relevant to the national response to the epidemic. In terms of the proportion of activities, it can be seen that two of the three project goals and a majority of activities are not devoted strictly to HIV/AIDS but to the more general needs of the target population. However, this in large part is a function of the marginalization of the IDUs, who do not seek or receive the same level of medical and social services as the rest of Malaysian society. It is likely that any other strategy than one that offers a variety of services (not just HIV-related ones) to this particular group would fail to engage their trust and participation and therefore not be effective at all.
· Effectiveness: There are no quantitative measures for the impact the project has had on IDUs in Chow Kit. However, the available evidence suggests that IKHLAS has been highly effective in gaining the trust of its target community (which is likely a function of its effectiveness in providing services this community wants or needs) and in attracting resources (food, medicines, services, funds) from the wider community. The project has also been effective in its advocacy activities through the favourable media profile it has been able to generate and the institutional links it has created with government and NGOs.
· Efficiency: The combination of a drop-in centre and outreach via staff and volunteers appears an efficient application of resources, particularly given the hard-to-reach characteristics of the target population. The cost-efficiency of the drop-in centre is maximized by use of client labour (under staff supervision) in cleaning, cooking and shopping and by securing the services of medical staff on an unpaid basis.
· Ethical soundness: IKHLASs voluntary and participatory approach to HIV/AIDS is in line with current ethical standards in the field. The projects efforts to create a higher and more sympathetic profile for its clientele among the greater community, and to give them a channel for self-advocacy, supports basic human rights objectives.
· Sustainability: while recognizing the precarious nature of much its support, IKHLAS has made impressive strides in securing a variety of resources from a wide range of donors, institutions, and individuals. This diversity of support has not only permitted the project to survive for over six years but is probably the projects best guarantee of sustainability in the future.