SHARING THE CHALLENGE OF AIDS PREVENTION - The Community AIDS Service Penang
MALAYSIA AND HIV/AIDS
The Malaysian peninsula is bordered by Thailand to the North and Singapore to the South. The States of Sabah and Sarawak and the Federal Territory of Labuan are separated from peninsular Malaysia by the South China Sea and border the Indonesian island of Kalimantan. In 1992, Malaysia had a total estimated population of 18 million, made up of approximately 61 % Malays, 30% Chinese and 8% Indian. More than 42% of the population fell into the 15-39 year age group. The official religion of Malaysia is Islam, although other religions, particularly Buddhism, Hinduism and Christianity are practiced freely. Bahasa Malaysia is the official language, but English, Tamil and Chinese languages are both widely used and taught in schools and colleges.
In the early 90's, Malaysia's economy was booming but short of labour. A 1990 survey found that the manufacturing sector alone was short of between 50,000 and 80,000 workers, while the Malaysian Agricultural Producers Association stated that plantation output could drop by one third if foreigners were to leave. To fill the gap, thousands of workers were coming to work in Malaysia, both legally and illegally, from Indonesia, Bangladesh, the Philippines and other poorer countries in Asia. Although numbers were probably small, there were frequent articles in the press about migrant sex workers, particularly those from Thailand. More than 3.8 million tourists visited Malaysia in 1991.
Malaysia recognised that it had a serious problem with drug addiction. In 1991, there were reported to be more than 100,000 injecting drug users, most favouring heroin. To control the situation, Malaysia inflicted severe penalties for drug use and had retained the sentence of death for trafficking.
The first AIDS case in Malaysia was detected in December, 1986. A proactive surveillance programme, launched in 1989 to screen injecting drug users in Government correctional centres and medical institutions, resulted in an apparently sharp rise in HIV+ cases around that time. In January 1991, there were 750 officially-reported cases of HIV infection in the country, and 19 people suffering from AIDS. By August 1992, the figure was 3,735 HIV+ persons, while the number of AIDS cases had risen to a total of 60, of whom 40 had died. Of those identified as HIV+, by far the largest proportion were still injecting drug users, although blood donor screening had detected an annual doubling in the incidence rate of HIV infection since 1987.
As reports of AIDS in Asia appeared in the news, Malaysian papers carried articles under headings such as "Killer Disease Found in Malaysia" and "Man Gets AIDS in Hospital through Blood Mix-up". Widespread fear and a lack of clear information resulted in misunderstandings and misapprehensions about HIV transmission. Blood banks in many hospitals ran dry as donors stayed away for fear of contracting AIDS. Published figures on HIV infection rates among the Thai sex workers led to local newspaper articles and letters condemning promiscuous behaviour and calls for the Government to test all suspected prostitutes for HIV infection, to close down 'vice dens' and to prevent HIV+ foreigners from entering the country. The Ministry of Health, aware of both the facts of HIV transmission and the experiences of other countries in their efforts to stem infection rates, was making efforts to educate the public. The Ministry was also supporting NGOs in their HIV/AIDS efforts, providing such organisations as the Pink Triangle with technical assistance and AIDS education materials. But the argument that 'prevention was more important than human rights' was being forcibly made, and in late 1991, the Ministry was directed by the Cabinet to study various proposals for containing the epidemic. (Exhibit 1.)
THE LAUNCH OF THE COMMUNITY AIDS SERVICE PENANG
During 1989, individuals from the gay community in Penang began to discuss the HIV/AIDS situation in the country. Some already had direct experience of trying to help individuals who were concerned about their HIV status and were seeking blood tests. Others had seen the fear and discrimination faced by those identified as HIV+. Public education at that time was focussed on the need to avoid sexual contact with those from "high-risk groups"; this gave a false sense of security to people outside of those groups, whilst providing little practical information on how to protect against infection to those who did see themselves as being at risk.
In November 1989, CASP was launched with seven founding members, drawn from the University (both Malaysian citizens and expatriate faculty on contract), the Penang Family Planning Association (FPA), and other private sector organisations. All were volunteers to CASP, holding full-time jobs elsewhere. The group agreed on its aims and objectives (Exhibit 2), and submitted their constitution for formal registration with the Registrar of Societies. Until registration was formally granted, an organisation could not conduct fund-raising activities or receive external funding. By early 1992, the application to register CASP with the Registrar of Societies had been approved. Once registered, CASP would have to submit annual reports to the Registrar of Societies including the minutes of its Committee meetings, the total number of paid-up members, and audited financial statements.
THE FIRST THREE YEARS
AIDS Education for the General Public
CASP's first HIV/AIDS education activities were carried out in conjunction with the Penang FPA in various factories, schools and youth groups. CASP members also provided a ready entry to the university for AIDS prevention talks to both staff and students.
November 1989 also saw the beginning of CASP's collaboration with the Pink Triangle Malaysia when the latter visited Penang to provide an educational show at a local nightclub. 1989 was also the first year that CASP participated in World AIDS Day activities; for the 1991 World AIDS Day CASP set up a stall at the Penang ferry terminal, selling books on AIDS, CASP key rings and T-shirts; giving out free pamphlets. Where CASP has seen the need, it has produced its own information materials, including posters, leaflets and instructions on proper condom use. To offset some of its costs and as a means of advertising CASP services, key-rings, pens and T-shirts have been printed and sold.
Advocacy for Effective National Prevention Policies
In Malaysia, 'Letters to the Editor' of the newspapers have traditionally been a way of conducting public debate of important issues. CASP used this medium to full advantage, despite the fact that this might antagonise those of differing views. When news of the Cabinet's directive to the Ministry of Health appeared in the papers (Exhibit 1), CASP responded rapidly, taking the opportunity to present the experience of other countries and the negative consequences of discriminating against those infected with HIV (Exhibit 3).
Hotline for AIDS Information and Counselling
In March and April 1990, Pink Triangle Malaysia provided Hotline Counselling training for CASP members and a few student volunteers from the university. By October of that year, a telephone had been installed in the home of one of the members and a roster of members and volunteers drawn up to man the hotline from 7:30 pm to 9:30 pm every Tuesday and Thursday. Some members already had previous counselling experience, and at the start of the hotline service, a newly-trained counsellor would be paired with someone more experienced. CASP was careful to restrict the extent of the Hotline service to a level that it felt it could consistently maintain.
Advertisements for the Hotline were placed in the local newspaper, but frequently they were withdrawn by the newspaper after the first appearance. Subsequently, as CASP began to produce its own HIV/AIDS information materials, it always included details of the hotline service and number. Hotline details were also given out at all of CASP's AIDS education talks and events. Calls to the hotline tended to increase whenever news about HIV/AIDS was prominent in the media; during quiet times, few if any calls were received. Most of the calls have been to ask for factual information about HIV/AIDS; a few callers have discussed their personal concerns. Two further training sessions on telephone counselling were held in 1991. Before the second programme, CASP placed an advertisement in the paper calling for volunteers to attend the training and to help man the hotline. Several people did apply and joined the training, but very few of them subsequently became active volunteers.
Pre and Post HIV Test Counselling
In early 1991, building on the Hotline training, CASP members decided to offer counselling for those who were considering taking an HIV test, to refer them to a private laboratory for confidential testing, to accompany them to the test, and to offer further counselling at the time of the test result. Up to August 1992, although some individuals had made the decision to seek an HIV test, few had actually turned up for their appointment at the laboratory. CASP was also concerned that it had not yet been able to identify a suitably trained and sympathetic doctor to whom individuals who tested HIV positive could be referred for any necessary treatment.
AIDS Education for Hotel Staff
In 1991, one CASP member whose husband provided her with access to the Penang Hoteliers' Association, was able to discuss the implications of HIV infection at one of the Association’s meetings. Afterwards, she made contact with individual hotel managers and one of these agreed to allow CASP to talk to their managers and staff. Hearing of the success of this first talk, other hotel managers then requested CASP's help, and by the end of 1991, CASP had visited each of the major hotels in Penang. These hotels had a very high staff turnover; CASP was aware that AIDS education talks would have to be repealed frequently, but a shortage of experienced members was a problem in sustaining this program. CASP was also instrumental in persuading the hotels to install condom vending machines in both the gents and the ladies washrooms. This was a major step since, until that time, condoms could only be obtained through private pharmacies or, if the client was married, through the family planning programme at Government and FPA facilities.
The hotel staff education programme led to another opportunity for CASP, this time to reach young people through the hotel discotheques. CASP members used their own children to help them recruit a number of youngsters willing to talk to their peers. CASP provided them with information about HIV transmission and prevention and then accompanied them into the discos where they shared this information and distributed leaflets and condoms.
Sex Worker Outreach Programme
In August 1992, CASP had just started an outreach programme for sex workers on the streets of Penang. Once a week, a small team of members would visit the working area of the female prostitutes and transvestites and would distribute leaflets and free condoms to both the sex workers and their clients. The sex workers and the CASP members were gradually building recognition and trust, which CASP hoped would lead to more open information exchange and permit the development of other support programmes for this group.
CASP AS AN ORGANISATION
By August 1992, only one of the founding members was still with CASP. Some had moved away from Penang, some had found that the demands on their time had become excessive, some had become uncomfortable with CASP's working style and choice of activities.
However, new individuals had filled their places and CASP had a total of 50 individuals on their mailing list, of whom 20 were paid-up and active members. The recent annual members' meeting had elected a new nine-member Committee and the appointees were busy considering strategies for the future.
The amount of work, both programme and administrative, was large for a small group of volunteers to deal with in the evenings and weekends. Experience had shown that excessive demands could lead to frustration and tension among members. The CASP Committee knew that they needed to increase the number of active members, but previous drives to do so had not had the expected results.
In addition, few of the newly-recruited volunteers had contributed to the extent anticipated. Some had been unable to give much time to the work of CASP; others simply drifted away from the group. It was sometimes difficult to integrate new members into the organisation, especially since most had little or no previous experience of HIV/AIDS education or counselling. By August 1992, CASP members were wondering whether enough effort had been made in the past to make these new volunteers feel useful from the very beginning and were considering what strategies they might use in the future to attract and retain new members.
Another issue being considered by the Committee was how to reconcile the different interests, needs and priorities of the members. CASP volunteers came from a wide variety of backgrounds and brought different skills and ideas to the group. There were differences in working style: some preferred to work as a loosely knit group, without a clearly defined hierarchy; others were accustomed to and felt more comfortable with a more formal working environment. Views on the approach that CASP should take also varied: some members felt that CASP should be a 'pathfinder', taking an independent and sometimes aggressive role in promoting effective HIV prevention; others felt that CASP should take a more cautious approach and work more closely with, or under the umbrella of, official agencies.
In July and August 1990, two CASP members had attended an AIDS conference in Australia during which it was suggested that CASP apply for financial support from the Australian International Development Aid Bureau (AIDAB). As a result, CASP submitted a proposal to AIDAB which resulted in a 12-month commitment of A$ 12,500 for the establishment of the Hotline, covering telephone equipment, office and telephone costs, counselling training, and the purchase of audio-visual equipment for AIDS education. Advance funding for the first quarter eventually arrived in August, 1991; subsequent quarterly funding was to be released following receipt of a progress report and financial statement from CASP.
In January 1992, CASP had felt it necessary to move its operations out of members' homes into a proper office and had managed to find a landlord willing to rent to them. But the rental and utility costs represented a significant monthly outlay. To add further financial pressure, by August 1992, the final quarters' funds from AIDAB had not yet been released since CASP's progress report and accounts for the previous three months were still outstanding.
During 1991, CASP had developed and submitted a second funding proposal to AIDAB, this time covering a three-year period. This proposal included continued funding for CASP's existing activities, together with several new initiatives. (See Exhibit 4.) By August 1992, although the first project funding period was officially over, no response had yet been received from AIDAB in relation to a second phase of funding. CASP's new Committee had much to think about.
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