would certainly want to continue working once they feel better or recover sufficiently,yet a number of them said they had experienced discrimination as no employer wouldwant to hire a HIVinfected person even after he/she responded well to treatment andmedication and would feel fit to work.“...they are very sensitive. They are very sensitive with <strong>this</strong> particulardisease and like HIV or either you have TB. Even though is the pastrecord you have TB, also they won’t accept. Even though now they arealready okay, they seem scared, they seemed worried. It doesn’t...itdoesn’t prove that the TB comes back. Because they already have the TB.So these are the things that fear...so, they give us a very ...hard time in ourlife...they give us a big worry...especially in our financial...”(Male, 49 yrs, University education, DU)The economic impact on persons with HIV/<strong>AIDS</strong> varies by sexual identity, class, genderand age. For example, transgender and sex workers in the study are found to be impactedgreater than other groups. Once they fell ill and become very sick they could not carry onwith sex work or some stopped because they felt it was wrong to infect others.Some of the transgender sex workers in the study were almost destitute and on the brinkof being homeless and abandoned to die until literally rescued from the streets byWAKE. Often, <strong>this</strong> group face double discrimination being transgender and sex workerwhen applying for welfare or monetary aid from local authorities and agencies.“Mau beli satu ubat, vitamin pun...mau duit. Doktor sudah tadi kata dalamkaunseling cakap lu mau makan ini ubat macam ini macam mau jagabadan, kalau ada duit beli ini barang. Saya semua...ah...ini macam juga.Apa pun mau beli pun mau duit. Sekarang mau makan ubat HIV punyaduit pun bulan bulan saya mau beli. Saya mana...macam mana mau pergicari?”(“To buy one medicine, vitamin...need money. Doctor told in thecounselling you must take <strong>this</strong> medicine, like <strong>this</strong> you can take care ofyour body and health. Whatever needs to be bought, needs money. Now,(I) want to take the HIV medicine, every month I must have the money tobuy. Where do I...how do I go find (the money)?”)(Transgender, 29 yrs, Primary education, SW)At the other end are the MSM respondents who were economically better off since theyworked as professionals and are of higher income status. Women infected by husbandstended to also be badly affected economically, especially if and when husband had diedof HIV/<strong>AIDS</strong> leaving her infected and having to fend for herself and the children assingle parents.“Saya resign sudah sebab aku punya kakak tolong sampai balik – baliksini...Dimana saya harus katakana....kalau saya resign pun...bagaimnanamahu kasi sekolah dia tu tapi nasib...”66
(“I resigned because my sister helped bring me back home here...how tosay...if I resign...how to send (my child) to school…but it’s (my) fate...” )(Female, 46 yrs, Lower secondary education, Infected partner)“I do not have money to buy tonic. My husband only gives me RM20 toRM30...what can I buy? And I have to buy clothes and pay for mychildren’s school fees...Sometimes, I have to search for wild vegetables tomake food. Sometimes, go for chopping firewood...”(Female, 37 yrs, Primary education, Infected Partner)Their situation deteriorates when they themselves become sick and cannot continue towork. A couple could still resort to Employment Provident Fund while some others hadto rely on welfare or charity.“Dia potong EPF saya. Itu wang juga saya dapat...kalau tak dakerja...tak da wang. Saya sudah berhenti...sudah empat tahun. Mm...saya...dua tempat saya kerja...saya tak da sombong, tak da malas, tak da apapun...saya terus kerja juga. Sekarang saya kena sakit...saya berhentikerja...saya makan itu ubat ah...saya tak boleh...saya pusing...saya takboleh buat kerja.”(“They cut my EPF. That’s the only money I have...if not working...nomoney. I stopped working...already 4 years. Mm… I... (used to) workedin two places...I was not proud, not lazy...continue working. Now I’msick...I stopped working...I take the medicine ah...I can’t...I feel dizzy...Ican’t work.”)(Female, 44 yrs, No formal education, Infected Partner)Older HIV/<strong>AIDS</strong> respondents would face greater economic difficulties particularly ifthey had stopped work prior to diagnosis since they could not have planned for such afinancial burden brought about by HIV/<strong>AIDS</strong>. One retiree respondent was verytraumatised and desperate for financial aid as he had used up all his retirement funds thathe had withdrawn from the Employment Provident Fund since being diagnosed; he evenhad to sell off all property that he had - car, house, and even furniture leaving himthreadbare with his clothes and a sleeping mattress.“I’ve been working in hotel line for 20 years. Over 30 years. So I hadenough EPF at that time...So I thought I want to relax. That time I feeldifference in me. You know, I thought that I’m old. You know, so timefor me to relax. Time for me to enjoy life. Because when you workah...especially when you work in high level hotel industry, you have notime, not much time for yourself. So, I stopped (work), I went ah...Mecca,I came home, I thought want to relax but I became sick...Emm...like nowI finish all my money because I have, I though that HIV emm...won’t livelong...So, it’s my mistake once I withdrew my EPF, I finished all.Ah...because I thought if I die I won’t bring the money along so I finishmy money. That was my mistake. So now...I got nothing left. I have car, Isold. I have a house, I sold. I have even (sold) furniture, my roomfurniture I sold out...I have got nothing. I have only my clothesmy...mattress and nothing else.”67
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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
- Page 16 and 17: is that the large majority of women
- Page 18 and 19: 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 68 and 69: (Transgender, 53 yrs, Upper seconda
- Page 70 and 71: “Sometimes I didn’t get enough
- 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
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- 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
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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
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Figure 5: Percentage of Respondents
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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