“Because we take drugs….no time to go to hospital!”)(Male, 36yrs, Upper secondary education, DU)There were very few complaints about adhering to the strict drug-taking schedule, evenduring fasting month with the necessary adjustments. In fact, only one womanexperienced a problem remembering to take her medication on time, and <strong>this</strong> was whileshe was working.Infected women and children are provided with fully subsidized HIV drugs, as pernational policy. However, there were accounts of people in other groups, for whommedication is only partially subsidized, who stopped taking their medication because theycould not afford it. Prices they paid ranged from RM90 or RM140 per month to RM250for three months’ supply. One mentioned a drug treatment price of RM706 per month.One or two DU men had access to HIV drugs that were given free on a clinical trial basisbut <strong>this</strong> free “trial” supply has continued for more than five years. A participant inKelantan noted that, in the past few months, the hospital in Kuala Trengganu provided alldrugs free to HIV patients, regardless of mode of transmission. In fact, a few participantsreported that all drugs are now provided free where before they had to pay for one ormore.Not many participants used traditional medicines or alternative therapies. A smallnumber mentioned that they heard of traditional therapies but none were taking any atpresent. One mentioned knowledge of someone taking a herbal medicine which costRM1000 a bottle from Terengganu. How much quantity <strong>this</strong> bought or how long it lastsfor was not known. Another DU participant said he tried a traditional drug for threemonths but, after finding no benefit, went back to modern drug therapy. Althoughspiritual healing is known to be popular in Malaysia, only one woman in Kuching drankwater blessed by a spiritual/religious healer.In terms of supplements and diet, a few participants, mainly women, expressed consciousefforts to take supplements or make dietary changes in light of their HIV status. A fewsaid they tried to consume more vegetables, especially green vegetables. One youngwoman, with tertiary education, said she looked out for food supplements specifically toboost her immunity. Such food supplements, she added, are not cheap. Anotherconcurred by noting the price of one supplement as RM500 a bottle (Elken?). Twoothers, respectively, took spirulina and a blood tonic. A few others, including from othergroups obtained vitamins from the hospital where they get treated. None of the womenSWs who are still doing business consume vitamins or other health supplements.None of the Chin refugees are aware of any traditional therapy or supplements. Only onerefugee was prescribed vitamins by his doctor but, at that point, had not started taking itsince his doctor did not tell him when to begin. Whether <strong>this</strong> was a result of a languagebarrier between a doctor and a foreigner, or simply an oversight on the doctor’s part, it isa useful reminder of the importance of clear communication by healthcare staff aspatients follow instructions on their medications implicitly.In terms of other health and lifestyle behaviour, a few of the participants were active drugusers; primarily women sex workers followed by DUs. It is interesting to note that all thesex workers who are drug users or drug dependent were introduced to drugs by theirhusband or boyfriend. While alcohol consumption was not common among the40
participants, one woman sex worker admitted that she had a problem with alcohol abuse.This was the reason her children (all adults) ended their relationship with her years ago,and how she began doing commercial sex work.Condom useUse of condoms was specifically probed in the discussions based on its protectivefunction in sexually transmitted infections. Among the women participants, none of theinfected women partners, who are currently without a partner due to death or separation,claimed to be sexually active. Hence, the question of condom use does not arise. Amongthose who are sexually active, there is awareness of the need to use condoms forprotection. With no exception, all the men with a regular partner, notably, spouse,reported using condoms every time they have sex:“For sex….is only condom. No other way of protection.”(Male, 42yrs, Primary education, Heterosexual)“This is for protecting our partner from being infected….because we havebeen told by those doctors and counsellors.”(Mae, 36yrs, Primary education, Heterosexual)“Kena ada….kena ada. Kena pakai kondom….mesti pakai.”(“Must have….must have. Must use condoms….must use.”)(Male, 39yrs, University education, DU)One woman (Infected Partner), however, remarried after the death of her husband. Shesaid she informed her new fiancé, who is not infected, prior to marriage but he waswilling to marry her any way. However, despite knowing the risks of infection, andadvised by their doctor each time he went for a screening test, he did not use condomsuntil after their child was born. Both husband and infant, presently, are not infected:“Kalau macam saya…..saya memang honest. Memang saya bagi tahusama ada dia terima kah atau tidak. Kekadang tu…..actually kan, mulamula tu kan, saya ada perjanjian dengan dia. Saya harap perjanjian kamikan……sex protection…..pakai kondom itu kan? Tapi last-last, sebelahsuami ni tidak mahu pakai kondom. Rupa rupanya kan….motif nya tidakpakai kondom pada awal tahun 2001. Lepas sekarang baru dia mahupakai kondom. Tapi…skrin, skrin, skrin….masa negatif tu kan, doctorcakap mesti pakai kondom. Bila dapat anak satu kan, terus dia [pakai].”(“Like me….I’m actually honest. In fact, I asked him whether or not he canaccept. Sometimes….actually, initially, I made an agreement with him. Ihoped we agree to….protected sex….use condoms right? However, in theend, my husband did not want to use condoms. It turned out….his motivewas not to use condoms beginning of 2001. Now, he wants to usecondoms. But….screen, screen, screen….at that time. Negative, doctorsaid we must use condoms. After we had one child, he immediately[started using condoms]”)(Female, 30yrs, University education, Infected Partner)41
- Page 2 and 3: Table of ContentsPROJECT TEAM 5ACKN
- Page 4 and 5: Information received at the time of
- Page 6 and 7: AcknowledgementsThis research is fu
- Page 9: The main findings from the qualitat
- Page 14 and 15: 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 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 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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“…..depends on who is the perso
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(“I …my experience society will
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(“Can…can marry, no problem. Bu
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Harm Reduction programmeSome urban
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(“In my opinion such campaign sta
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Table 2aDistribution of Respondents
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female sex workers (seven out of 13
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NO. OF LIVING PARENTSNobody 7 1 1 2
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tested in drug rehabilitation cente
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GroupsDUHetero-SexuallyInfectedMenT
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y the Ministry of Health (74.2%) or
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Child CareYes, often 0 0 0 1 0 1 0
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GroupsDUHetero-SexuallyInfectedMenT
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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