“Sometimes I didn’t get enough sleep, but I have to work just for mydaily life.”(Male, 33 yrs, No formal education, Refugee)“Yes, it has really affected (me), because I can’t sit long and stand long.”(Male, 30 yrs, No formal education, Refugee)Drug users said they were already having financial difficulties due to drug addiction,being diagnosed with HIV and requiring money for medication further compounded theirproblem. However, a few of them continued to find whatever odd jobs they could tosurvive when not under the influence of drugs. One even recounted his past when he hadto commit crime to feed his drug habit viz. RM1500 per month for heroin.“Financially then I had to look for odd jobs like selling VCD like thatbecause I need to survive you see. Selling VCD and sometimes I cookwith although small, small, small ah...restaurant.Ya, is already far, veryfar different...because ah...before I work as...I started architecture course Igo for higher admin(instration) in YTL Corporation. So I ...drawing asalary of 6000, so when I was on drugs, I relapse and then I leave thecompany. I decided on it because I leave a bad name in that place becauseI was not punctual.”(Male, 49 yrs, University education, DU)“Dulu saya terlibat dengan heroin....Saya rasa ah...mencari wangtu...susah sangatlah. Saya nak habiskan pun senang juga. Sebab sayacara gaya hidup saya memang havoc...Bila saya nak bekerja saya rasaduit saya yang kerja tu, saya nak menghabiskan untuk heroin. Untuksebulan kerja, kalau satu hari kita menggunakan RM50, sebulan dahRM1500. Kalau semata-semata dia nak habiskan untuk me...menghisapheroin ini, lebih baik saya buat jenayah.”(“In the past, I was involved with heroin...I felt ah...looking formoney...was very difficult. (But) I want to spend money it is so easy.Because my lifestyle is truly havoc...When I work, I feel the money fromthe work, I just want to spend it all on heroin. For one month work, if oneday use RM 50, one month already RM1500. If all the money is to bespent on heroin, it’s better I commit crime.”)(Male, 32 yrs, Lower secondary education, DU)Economic burden of HIVWith regards to the impact HIV diagnosis has on expenses, the majority would say thebulk of it would be spent on buying medication and supplements (Vitamin C, fish oil,spirulina) to maintain their health. The constant monitoring of the response to treatmentin terms of trips to the hospital to check on their CD count also takes a toll on theirexpenses. This sum varies from RM 350 to RM 2000 monthly.“The first thing, ya...finance is...every month have to pay...RM300 formedication.Three to six months have to pay RM400 for the blood70
test...oh...RM500, ok...CD4...and one year time have to (do) live function(test)...<strong>this</strong> type of test...that quite costly...”(Male, 36 yrs, University education, MSM)To many of the MSM respondents, although relatively of better economic standing thanthe others, paying for medical expenses cuts deeply into their income amongst other preexistingexpenses such as paying for the car and apartment.“...since I take medicine...since June I take medicine...and now I reallystop smoking...OK la...you will think how you going to make moremoney to fill <strong>this</strong> and that...but of course it beats you financially...becauseI have my commitment to my apartment...car...things and all that. So, Ithink all of us like taking medicine is some kind of financial burden...”(Male, 46 yrs, University education, MSM)“In my case I actually I invested in an apartment...was supposed to be myparents’ old age...and then they can collect rental and all that...after I wasdiagnosed and I have to take medication...during those time, per month itwas RM200...and it was only the medicine you know...and the CD4 (test)was sent outside to specialty lab...and all that was an extra cost...I endedup selling my apartment andusing the money for treatment...and I neverbought another apartment again...and then now...fortunate the medicinehas dropped to such level that is about RM200-300 a month...which ismanageable...”(Male, 46 yrs, University education, MSM)While the MSM respondents could still manage their treatment expenses somewhat,many of the others had to depend on welfare, charitable organisations, or the NGOs suchas Pengasih, KLASS, or the UNCHR for the refugees.HIV/<strong>AIDS</strong> Policies, Programmes and PLHIV ParticipationAwareness of HIV/<strong>AIDS</strong> policiesFrom the study, it is clear that people living with HIV/<strong>AIDS</strong> themselves have their ownopinions as to the level of HIV/<strong>AIDS</strong> awareness, extent of its acceptance by the public,and their feelings on the gaps and limitations in efforts to raise awareness of the disease.Respondents from the Intravenous Drug User groups, both from urban (Kuala Lumpur)or rural areas (Kota Baru, Kelantan), have very strong feelings about the gaps andlimitations in efforts to raise HIV/<strong>AIDS</strong> awareness. This could be due to the stereotypingof drug users with HIV/<strong>AIDS</strong> still prevalent in our society. Several DU respondents fromurban group pointed out historically awareness or knowledge on HIV/<strong>AIDS</strong> tended tofocus on negative aspects such as HIV kills and the media portrayal of HIV/<strong>AIDS</strong> isinevitably of death - pictures of hospitals, the bedridden, and the dying conjuring fearversus educating public to understand people living with HIV/<strong>AIDS</strong>. They furtherexplained that although the authorities realise their mistake and aims to change theapproach now, it is not going to be easy to suddenly dispel such fears long instilled in thepublic. The way to dispel fears and discrimination against HIV/<strong>AIDS</strong> is to constantly71
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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
- Page 20 and 21: ObjectivesThe specific objectives o
- Page 22 and 23: have been rejected by their immedia
- Page 24 and 25: eport) that his/her healthcare (or
- Page 26 and 27: CommunityKnowledge/awareness of HIV
- Page 28 and 29: Framework of analysisA descriptive
- Page 30 and 31: urban and a rural community. In all
- Page 32 and 33: medication, the physical health com
- Page 34 and 35: husbands working in other places wh
- Page 36 and 37: (“And then, this doctor, he/she v
- Page 38 and 39: their food. Nurses and their attend
- Page 40 and 41: “Because we take drugs….no time
- Page 42 and 43: The same claim to 100% condom use w
- Page 44 and 45: in asking them to use condoms, even
- Page 46 and 47: “Normally…..normally, memang ma
- Page 48 and 49: (“But I continued using at that t
- Page 50 and 51: “Buat pada permulaannya, saya mem
- Page 52 and 53: However, not all experiences with d
- Page 54 and 55: yang amat sangat. Tak pernah I rasa
- Page 56 and 57: long term fears and anxieties. The
- Page 58 and 59: “The first time I heard from the
- Page 60 and 61: handset, I too, have handset. Some
- Page 62 and 63: have been turning to God since and
- Page 64 and 65: felt I’m indecent. But, at one ti
- Page 66 and 67: would certainly want to continue wo
- Page 68 and 69: (Transgender, 53 yrs, Upper seconda
- Page 72 and 73: positively portray people living wi
- Page 74 and 75: “After my diagnosis...I’ll pay
- Page 76 and 77: not know or might not want to be bo
- Page 78 and 79: (UNAIDS 2005).(UNAIDS 2000):The fac
- Page 80 and 81: “…bawak saya pergi hospital. An
- Page 82 and 83: erpindah ke tempat lain makin lama.
- 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
- Page 94 and 95: (“Can…can marry, no problem. Bu
- Page 96 and 97: Harm Reduction programmeSome urban
- Page 98 and 99: (“In my opinion such campaign sta
- 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
- Page 108 and 109: GroupsDUHetero-SexuallyInfectedMenT
- 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
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Stigmatization and how it has affec
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GroupsTable 15How They Cope With Th
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Table 18Percentage Of Respondents W
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esponsible for their families. As m
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In this study, it took more effort
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eing transgender and sex worker whe
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denies them social and economic opp
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working towards their future, who c
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ReferencesAidsmeds.com (2006). Curr
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Sen G, George A, Ostlin P (2002). E
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Annex II: FGD Guide for PLHIV Group
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♦ Spouse: marital/sexual relation
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I. Attitudes and Perceptions relate
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I. HIV/AIDS Knowledge‣ What did y
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Annex V: Rapid Needs Assessment Que
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Types of support or responsibilityM
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Please tick (√)one onlyIf yes,ple
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more help would be useful for you i
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Annex VI: Ethics Approval Letter157