for many of the MSM respondents, who are relatively of better economic standing thanthe others, medical expenses cut deeply into their income amongst other pre-existingexpenses, such as, paying for their car and apartment. While the MSM respondents stillmanage their treatment expenses, many of the others have to depend on welfare,charitable organisations, or the NGOs, such as Pengasih, KLASS, or for refugees, theUNHCR.Although many in the study expressed they would certainly want to continue workingonce they feel better or recover sufficiently, a number of them said they had experienceddiscrimination as no employer would want to hire an HIV-infected person even afterhe/she responded well to treatment and medication and feels fit to work.HIV has an impact on career options and job mobility for all groups of respondents.Some MSM respondents, although better off working as professionals, were forced toquit high-paying jobs, or even leave the country of work, and subsequently accept lowerpaying jobs. A member of the MSM group recounted that after he was first diagnosedwhilst working in a neighbouring country, he asked to quit and leave the country. Formany, contracting HIV limited their career potential or upward mobility.The impact is far reaching and deep because, as some of them explained, even thoughthey can maintain their health sufficiently to work, they would be discriminated eachtime they apply for a job as it is now a common requirement that applicants do a medicaltest and they fear their HIV/<strong>AIDS</strong> status would be revealed.In summary, the economic impact of HIV affects study participants from being employedto unemployed or underemployed; slipping from high-paying to lower-paying jobs; fromcareer potential to zero chances for career advancement; and from being financiallyindependent or dependent on a husband to being dependent on welfare, charitable NGOs,or their savings, such as EPF.STIGMATIZATION AND DISCRIMINATIONIt was evident from the study participants that HIV-positive people, whether they areinfected partners, heterosexual men, MSM, transsexuals, drug users, refugees or sexworkers, face and fear stigmatization and discrimination in <strong>this</strong> society. As described inthe findings, these manifest at family, community and institutional levels.Some experienced insults, harassment, ridicule and humiliation. Some were forced,overtly or subtly, to resign from their place of employment. In particular, the fear ofcontagion by HIV-infected people is one of the root causes of the stigma attached to HIV.Others felt they had to isolate themselves, and their families, by moving away to avoidbeing stigmatized. Clearly, years of IEC have not convinced people of the routes oftransmission and lay-persons, and even some healthcare workers, are still fearful of beinginfected from casual or close contact. The persistence of <strong>this</strong> misconception is supportedby the FGDs with communities and needs to be redressed.Moreover, with such prejudice and discrimination against PLHIV, the breech ofconfidentiality from healthcare providers and, to a lesser extent, from within their familyor friendship networks inflict severe psychological and emotional stress. Whether real orperceived, <strong>this</strong> fear of stigmatization and discrimination affects their quality of life and132
denies them social and economic opportunities through not only negative actions byothers but also via self-imposed isolation and limitation. It discourages PLHIV fromseeking employment because of pre-employment medical disclosure requirements, andalso has the effect of discouraging PLHIV from seeking healthcare and medical treatmentregularly, if at all. This may partly explain why less than half of the estimated 4,000PLHIV who can benefit from HAART take it up.In particular, the majority of DU men in the study reported experiencing some form ofdiscrimination, primarily from healthcare staff or prison staff but also from their ownfamilies/communities. As beholders of two socially undesirable traits, i.e., drugaddiction and HIV, it emerged from the needs assessment survey that 22 of 27 DU menin <strong>this</strong> study reported facing some form of discrimination. It is unclear how much of isarises from their HIV status or from their drug use. At the family and community level,some of the DU men spoke of the reactions from their families, many of which werenegative, more so in Kota Baru. A few noted that there was more discrimination in KotaBaru compared to Kuala Lumpur. Many in the group agreed on <strong>this</strong>. They surmised itwas due to the greater ignorance and lack of understanding about the disease in placessuch as Kota Baru. Interestingly, they pointed out that it was the IEC (Information,Education and Communication) campaigns that labelled HIV in tandem with drug use,promiscuous sexual activity and commercial sex. The conservative society in Kota Barumay also play a part in fostering prejudices against socially undesirable behaviours, suchas drug use.A majority of transgender PLHIV also said they faced some form of stigmatization anddiscrimination, including from Government aid agencies. As for drug users, transgenderpeople also face discrimination regardless of their HIV status. As far as drug addictionand HIV is seen as a “two in one package”, transgender persons bear the prejudice ofassociation with commercial sex. The group with the least to narrate such experienceswere refugees and heterosexual men. In large part, <strong>this</strong> lies in non-disclosure, i.e.,because their HIV status is not known. For refugees in <strong>this</strong> study, <strong>this</strong> is contributed bylimited access to the larger society, and also, they have the support of UNHCR.In contrast, participants in Kuching and Kota Kinabalu (comprising infected wives andwomen sex workers) appeared to be accepted by their families and did not experiencemuch stigmatization and discrimination at the family, community or institutional level.If ignorance of HIV were to be blamed, one would expect people in lesser developed EastMalaysia, where it is presumed there is less exposure to IEC campaigns, to suffer thesame consequences. However, <strong>this</strong> appears not to be the case. It is possible that sincehalf the East Malaysian participants are infected partners (wives), and the families of theothers (sex workers) may not be aware of their commercial sex work, they are viewed as“innocent victims”. Consequently, they receive more sympathy and support compared tothe drug users. To add support to <strong>this</strong>, they have no complaints about the treatment theyreceive from healthcare staff. Another possible reason is that they tend to live far awayfrom the urban centres where they access HIV-related resources, notably, healthcare,hence, their HIV status remains unknown amongst their community.This classification of HIV-positive persons into groups according to route of transmissionis institutionalised in Malaysia. In effect, <strong>this</strong> practice identifies whether or not a personwas infected by his/her behaviour or activity. Until recently, HIV drug treatment wassupplied free to certain PLHIV groups, i.e., women infected from their spouse, infected133
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Table of ContentsPROJECT TEAM 5ACKN
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Information received at the time of
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AcknowledgementsThis research is fu
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The main findings from the qualitat
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school or work, transport costs for
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is that the large majority of women
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In fact, special surveys conducted
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ObjectivesThe specific objectives o
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have been rejected by their immedia
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eport) that his/her healthcare (or
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CommunityKnowledge/awareness of HIV
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Framework of analysisA descriptive
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urban and a rural community. In all
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medication, the physical health com
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husbands working in other places wh
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(“And then, this doctor, he/she v
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their food. Nurses and their attend
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“Because we take drugs….no time
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The same claim to 100% condom use w
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in asking them to use condoms, even
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“Normally…..normally, memang ma
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(“But I continued using at that t
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“Buat pada permulaannya, saya mem
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However, not all experiences with d
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yang amat sangat. Tak pernah I rasa
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long term fears and anxieties. The
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“The first time I heard from the
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handset, I too, have handset. Some
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have been turning to God since and
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felt I’m indecent. But, at one ti
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would certainly want to continue wo
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(Transgender, 53 yrs, Upper seconda
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“Sometimes I didn’t get enough
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positively portray people living wi
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“After my diagnosis...I’ll pay
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not know or might not want to be bo
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(UNAIDS 2005).(UNAIDS 2000):The fac
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“…bawak saya pergi hospital. An
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- Page 84 and 85: pada HIV itu, dia nampak penagih. S
- Page 86 and 87: (Male, 49yrs, University education,
- Page 88 and 89: However this association with the n
- Page 90 and 91: “…..depends on who is the perso
- Page 92 and 93: (“I …my experience society will
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- Page 100 and 101: Table 2aDistribution of Respondents
- Page 102 and 103: female sex workers (seven out of 13
- Page 104 and 105: NO. OF LIVING PARENTSNobody 7 1 1 2
- Page 106 and 107: tested in drug rehabilitation cente
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- Page 110 and 111: y the Ministry of Health (74.2%) or
- Page 113 and 114: Child CareYes, often 0 0 0 1 0 1 0
- Page 115 and 116: GroupsDUHetero-SexuallyInfectedMenT
- Page 117 and 118: Figure 5: Percentage of Respondents
- Page 119 and 120: GroupsTable 12aEmotional Problems E
- Page 121 and 122: Stigmatization and how it has affec
- Page 123 and 124: GroupsTable 15How They Cope With Th
- Page 125 and 126: Table 18Percentage Of Respondents W
- Page 127 and 128: esponsible for their families. As m
- Page 129 and 130: In this study, it took more effort
- Page 131: eing transgender and sex worker whe
- Page 135 and 136: working towards their future, who c
- Page 137 and 138: ReferencesAidsmeds.com (2006). Curr
- Page 139 and 140: Sen G, George A, Ostlin P (2002). E
- Page 141 and 142: Annex II: FGD Guide for PLHIV Group
- Page 143 and 144: ♦ Spouse: marital/sexual relation
- Page 145 and 146: I. Attitudes and Perceptions relate
- Page 147 and 148: I. HIV/AIDS Knowledge‣ What did y
- Page 149 and 150: Annex V: Rapid Needs Assessment Que
- Page 151 and 152: Types of support or responsibilityM
- Page 153 and 154: Please tick (√)one onlyIf yes,ple
- Page 155 and 156: more help would be useful for you i
- Page 157 and 158: Annex VI: Ethics Approval Letter157