Key Findings


Average self reported baseline CD4 was 258.8 cells/mm3

Only 17.9% of respondents received a viral load test 

The average duration between HIV diagnosis and first CD4 test was 8.4 months

10% of those taking ART had experienced some delay in treatment initiation.

9.1% respondents reported having been sick in the 6 months prior to the interview and 62.3% of them required hospitalisation  and average cost of treatment was 2,347,987 INR (196.9 USD).

Only 66.1% of participants reported being able to get condoms whenever they needed.

11.7% of participants reported having had their HIV status disclosed by a health care professional without their consent. 

Among 532 PWID interviewed, 40% had no steady partner but 33% of those without a steady partner were sexually active and only 47% always used condoms.  

Among PWID with steady partners, only 31% ( of partners) were known to be HIV positive. Only 54.9 % always used condoms.

23.3% of respondents or their spouse were pregnant since their HIV diagnosis and 54% of these were unintended.

23.6% were advised not to have children. 0.7% reported being coerced to terminate pregnancy due to HIV status of mother

6.7%  of respondents were still on a stavudine

 

Study Outline


Since 2001, the Asia and the pacific region, has seen a 20% drop in the new HIV infections. In that same time the number of people living with HIV/AIDS who have access to ART has tripled. Despite this progress, access to ART, remains very low, with over 60% of PLHIV not having access to treatment. Overall, the East, South and South East, Asian region has some of the lowest levels of access in the world. For many years PLHIV groups were raising voice against a lack of rigorous research and information on the barriers and enablers to access to treatment, care and support. Historically studies in the region have been ad-hoc, and not representative of the needs and experiences of those affected by the disease.

Study Objectives 


The overall objective is to monitor and document the issues related to PLHIV’s access to HIV treatment, care and support services in Asia and the Pacific region. The specific objectives of this study is to assess the HIV treatment-related issues such as access to pre-ART care, ART, ART adherence, treatment literacy, high risk behaviours, mental health status, health seeking behaviours, etc. and, to monitor changes in key issues in community access to treatment, care and support services

Country Context 


Indonesia has one of the fastest growing epidemics in Asia. Prior to 1999 the epidemic  had remained low, except in pockets where there had been exposure to cross border fishing communities. Since 2000, however there was a rapid rise in the prevalence amongst injecting drug users in rehabilitation centres in Jakarta. By 2002 high rates were being seen in key populations, female sex workers, transgender sex workers, and male sex workers. Low condom use in those groups helped fuel the epidemic. The cumulative number of reported infections rose sharply from 7,195 in 2006 or 76,879 in 2011. Since 2000 the prevalence in those key populations has been >5%. The 2011 IBBS reported that prevalence amongst transgender sex workers was 43%, 34% amongst male sex workers and 10% amongst direct female sex workers. There was a decrease in prevalence amongst PWID from 52% in 2007 to 36% in 2011. In West Papua and Papua Provinces the HIV/AIDS rates 15 times higher than the national average. These provinces have been categorised as having a low-level generalised epidemic, driven almost entirely by unsafe sexual intercourse. These provinces see the highest rates of HIV outside of Africa, 2.4% amongst 15-49 year olds in the general population. Support from bilateral and multilateral funding initiatives has been crucial to Indonesia’s scale-up of the response to ART during the past five years, with an almost 2.5-fold increase from 15% (2008) to 35% (2010) of all expenditures allocated for care and treatment.

 

Methods  


Screen Shot 2014-07-18 at 2.32.56 PMSample size was determined using proportionate sampling method with error allowance of 0.003 and a target of 1655 people living with HIV was set for Indonesia. The sample size was then distributed based on geographical caseload reported by National AIDS Program. Risk-group and gender specific seeds (initial respondents) were recruited, using convenience sampling. Thereafter, a snow-ball sampling technique was used to enrol study respondents with seeds recommending their peers to the study. Respondents were recruited from 7 provinces across Indonesia, DKI Jakarta, West Java, West Sumatra, Bali, Central Java, North Sulawesi and Papua. A structured questionnaire was used to collect data. There were 14 sections and an interview in an average took 53 minutes to complete. A total of 18 data collectors were used. Ethical clearance was given by Atmajaya University. All respondents were provided standard  information on the study and a written consent was obtained. Data collection was carried out between 17 November 2012 and 31 May 2013.

Socio-Demographics


Screen Shot 2014-10-22 at 9.47.04 PM The mean age of respondents was 36.5 years.

46.4% of participants were male and 53.6% female. There were no transgender respondents.

37.5% lived in a rural area, 34.2% live in a small town and 27.5% in a large town or city.

53.9% of participants had a partner or spouse and were living with that person, 45.8% were single, divorced or widowed.

59.2% of all participants reported being members of NGO or CBO and 10.4% did work in a HIV program.

71.1% of respondents earned some form of income, on average LAK926,225 (114.8 USD)  per month.

Most of the respondents had a primary level of education (36.6%) and  30.5% had higher secondary or college level.

The average household size for all respondents was 5 people.

The most common self-identified risk group was “others” (60.9%) and international migrant workers constituted 22.3% of respondents.

The most common self-identified risk group was injecting drug user (32.1%).

 

 

HIV Diagnosis and Pre-ART Care 


Screen Shot 2014-10-22 at 9.48.17 PM  The overwhelming majority of respondents reported that their reasons given for going for a HIV test was due to illness or death of spouse or child (76.4%).

The most common place for getting a HIV test done was in government hospital (84.7%).

83.6% of respondents reported having had a CD4 test done.

The average baseline CD4 was 179.6 cells/mm3

Lao PDR showed the highest percentage of respondents having had a viral load test done for all countries in CAT-S (66.2%).

Almost all (97.7%) of the study participants sought government hospitals or government clinics for HIV consultation.

The average duration of time that CD4 test was done after HIV diagnosis was 14.4 months (median: 3.6 months, range: 0-10 years)

 

Health Seeking behaviour and associated costs


77% reported visiting their doctors, nurses or health workers at least once a month.

Only 12.3% respondents reported of being sick within 6 months prior to the interview, 70.8% of whom had required hospitalisation.

An average cost of treatment was LAK1,035,222 (128.5 USD).

Only 12.3% of those who were sick and hospitalised mentioned that they received some sort of subsidy.

66.2% reported that they paid out of their pocket for their treatment.

Only 13.2% of respondents had health insurance.

18.5% had received home-based care in the previous 3 months.

Stigma and Discrimination


39.1% of participants had disclosed their HIV status to someone other than their spouse, close family member or health care worker.

25% of participants who disclosed their status had been forced to change their residence or were unable to rent accommodation because of their HIV status.

97.9% of participants reported that they had never been denied health services due to their HIV status.

Only 3.8% of participants reported having had their HIV status disclosed by a health care professional without their consent.

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48.5% of participants were confident that their medical records were being kept completely confidentially.

Relationship with Health Care Provider


22% of participants on ART agreed or strongly agreed that they were sometimes insulted when talking to their HCP.

81% of participants on ART agreed or strongly agreed that their HCP made them feel comfortable when discussing any issues.

90% of participants on ART agreed or strongly agreed that their HCP had told them of the possible side effects of their ARVs.

90% of participants on ART agreed or strongly agreed that their HCP had told them of the changes to expect in their health when taking ARVs.

HIV Risk Behaviours


There were no respondents reporting to be current injecting drug users.

32.3% of respondents with a spouse or partner reported that the HIV status of their partner was negative or unknown.

88.7% of respondents reported being able to get condoms whenever they needed them.

Reproductive Health


65.8% of respondents have children, of whom 15.5% are known to be HIV positive.

65.6% of  respondents with a spouse/steady partner had received counselling on child baring since being diagnosed with HIV.

5.3% of respondents who had a desire to have children reported being coerced into being sterilised.

 

13.6% of respondents in a relationship, or their spouses, had become pregnant since being diagnosed.

Less than half of those pregnancies were intended (45.6%).

Treatment of Co-Infections (TB and HCV)


47.5% were diagnosed with TB after being diagnosed with HIV.

89.7% of those received treatment and 93.8% of those had completed treatment.

56.2% of respondents were provided with information on Hep C.

76.6% of respondents had a HCV test. 

2.1% (3) of those tested were found positive for HCV.

All had received treatment for Hep C.

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The average cost of treatment was LAK100,000.

Treatment Literacy


HIV Treatment literacy was measured by respondents answers to 25 questions. The higher score represents a higher knowledge of HIV prevention and treatment. The mean score for HIV treatment literacy was 17.1. 10.2% of respondents scored between 1 and 10. Only 2.3% had used the internet to search for HIV related information.

ART Initiation


97.4% of participants were on ART and the rest were not eligible for ART at the time of the interview. The most common regimen was Ziudovudine + Lamuvudin + Nevirapine (46.5%)

Screen Shot 2014-10-22 at 9.58.03 PM

Among the current ARV users,99.6% reported taking 95-100% of their ARV drugs while 0.4% reported taking less than 95% of their drugs.

None respondents were still on a Stauvoidine.

All respondents were aware of what ART is. Of the 516 study participants who were taking ART,55.9% were taking ART for three years and above.

10.5% percent of those taking ART delayed their initiation of ART treatment despite their eligibility.

ART Regimen and Self-reported Adherence


83.7% of participants on ART reported to have never missed a dose of their ARVs. Only 9.1% of respondents reported to have missed an appointment with their HCP within 3 months prior to interview. 66% of those who missed an appointment cited being busy as the reason.

The average time on ART was 4.3 years.

46.9% of participants on ART had changed regimen at least once since starting treatment.

The mean self-reported proportion of ARVs taken in the last month was 93.4%.

83.7% of participants on ART reported to have never missed a dose of their ARVs.

Long-term side effects (self reported)


84.5 % of participants on ART experienced at least one of the listed long-term side effects.

57.9% were told by a clinician that their body fat has changed due to side-effects of ARV

49.8 % reported to have felt numbness in the limbs

66.1% reported to have had problems with the liver

Gaya Warna Lentera Indonesia


Website: www.gwl-ina.or.id

Email: 

Gay Warna Lentera Indonesia (GWL-INA Network) was established 4th February 2007 in Surabaya. For the first two years the network operated mainly through email groups, facilitated by volunteers. In 2009 a national secretariat was established in Jakarta, with volunteers still working to support the network and mailing lists.

GWL-INA aspiring individual gays, transgender and other MSM are able to do prevention, care, support and treatment of sexually transmitted infections (STIs) HIV and AIDS and the health and well-being approach to sexual and reproductive well as human rights.

The goal os GWL-INA Network is to strengthen and mobilize organizations and communities in order to implement the program GWL prevention, care, support and treatment for STIs and HIV and AIDS in terms of health, well-being and sexual and reproductive rights. To build, develop and maintain communication and good cooperation between the organization and the community with the GWL and other interested agencies to achieve the fulfillment of health, well-being and sexual and reproductive rights GWL. And to coordinate advocacy work towards the achievement of health and well-being, including sexual and reproductive STIs and HIV and AIDS are optimal at GWL community. Today there are 78 organisations that are a part of the GWL-INA Network.

Vision:


 Network Gay, Shemale and Men Who Have Sex with Men (MSM) Other Indonesian (GWL-INA) aspire gay community and individuals, transvestites and other MSM are able to do prevention, care, support and treatment of sexually transmitted infections (STIs) HIV and AIDS and the health and well-being approach to sexual and reproductive well as human rights.

Mission:


Strengthen and mobilize organizations and communities in order to implement the program GWL prevention, care, support and treatment for STIs and HIV and AIDS in terms of health, well-being and sexual and reproductive rights.

Build, develop and maintain communication and good cooperation between the organization and the community with the GWL and other interested agencies to achieve the fulfillment of health, well-being and sexual and reproductive rights GWL.

Coordinate advocacy work towards the achievement of health and well-being, including sexual and reproductive STIs and HIV and AIDS on communities GWL optimal.

Achievement: 


GWL-INA’s biggest achievement has been providing capacity building to its CBOs member organization that include: organizational development, leadership, community and resource mobilization. Findings of recent MSM and TG joint assessment supported by MoH, NAC, GWl-INA and UN agencies shown that there are some increased of MSM and TG in accessing health services with percentage is 1%, particularly for provinces that there are MSM and TG CBOs/NGOs with the government support was provided. 

In 2011, GWL-INA and IAC (Indonesian AIDS Coalition) has initiated the establishment of an information center for PLHIV. This information center can already be accessed through the website www.odhaberhaksehat.org.

GWL-INA has also been instrumental in the initiation of a national strategy to accelerate ART for key populations. 

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