Key Findings


Average self reported baseline CD4 was 363 cells/mm3

Only 10.9% of respondents received a viral load test 

The average duration between HIV diagnosis and first CD4 test was 25.4 months (median: 12months, range: 0-160months)

3.1% of those taking ART had experienced some delay in treatment initiation.

28.1% respondents reported having been sick in the 6 months prior to the interview and 34.3% of them required hospitalisation. Average cost of treatment was 5,457 NPR (56.3 USD)

Only 51.3% of participants reported being able to get condoms whenever they needed.

11% of participants reported having had their HIV status disclosed by a health care professional without their consent. 

50% of respondents had poor treatment literacy 

Among 423 PWID interviewed, 50% had no steady partner but 42% of those without a steady partner were sexually active and only 57% always used condoms.  

Among PWID with steady partners, only 32.2% were known to be HIV positive. Only 67.2% always used condoms.

14.3% of respondents or their spouse were pregnant since their HIV diagnosis and 27.6% of these were unintended.

49.2% were advised not to have children. 3.6% reported being coerced to terminate pregnancy due to HIV status of mother

29.4%  percent 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 


In Nepal, the first case of HIV infection was reported in 1988. Since then, the HIV epidemic has evolved from a low to a concentrated epidemic among key populations at higher risk of becoming infected with HIV: people who inject drugs (PWIDs), female sex workers (FSWs), men who have sex with men (MSM) and seasonal male labor migrants particularly those migrating between Nepal and high HIV prevalence areas in India. The HIV prevalence is disproportionately higher among these vulnerable populations (PWIDs= 6%, MSM= 4%, male labor migrants=1.3% and FSWs=2% in 2012) compared to the general population (<0.5%). As of 2011, about 50,200 adults and children were living with HIV in Nepal. The HIV prevalence as well as the distribution of key vulnerable populations is not uniform within the country, but varies greatly between different regions in Nepal that therefore is divided into four different HIV epidemic zones: Kathmandu valley (risk groups: MSM, PWIDs, FSWs); Terai highway districts (sub divided into East-west and Pokhara valley: FSWs, PWIDs); Far-western hills (male labor migrants) and remaining hills. The government of Nepal is providing free of cost ART services through 39 ART centres across the country, as well as CD4 count services at 16 sites. 

 

Methods  


Screen Shot 2014-07-18 at 5.50.43 PMSample size was determined using proportionate sampling method with error allowance of 0.004 and a target of 1604 people living with HIV was set for Nepal. 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 participants with seeds recommending their peers to the study. TG respondents self-administered the questionnaire because widespread stigmatisation of homosexual behaviour in Nepal. Due to rejected participants and questionnaires, a total of 1598 PLHIV participated in the study in Nepal.

Respondents were recruited from 15 districts from across the three epidemic zones, Kathmandu Valley, Terai Highway Districts and Far Western Hills. A structured questionnaire was used to  collect data. There were 14 sections and an interview in an average took 64 minutes to complete. A total of 14 data collectors were used. Ethical clearance was obtained from Nepal Health Research Council (NHRC). All participants were provided standard information on the study and a written consent was obtained. Data collection was carried out between 1 Oct 2012 to 29 Mar 2013.

 Soco-Demographics


Screen Shot 2014-07-18 at 6.08.08 PMThe mean age of respondents was 35.4 years

57.9% of participants were male and 40.7% female and 1.3% TG. 

48.9% of respondents earned some form of income, on average NPR 3,318 (34.2 USD) per month. 

54.7% were either illiterate or could only read and write and only 10.6% had a higher secondary or college education. 

The average household size for all respondents was 5 people. 

The most common self-identified risk groups were PWID (26.5%) and international migrant worker (26.7%).

41% lived in a rural area, 29.9% live in a small town and 29% in a large town or city. 

56.5% of participants had a partner or spouse and were living with that person, 15% were single, divorced or widowed.

28.4% of all participants reported being members of NGO or CBO and 21.4% did work in a HIV program. 

 

HIV Diagnosis and Pre-ART Care


Screen Shot 2014-07-18 at 6.11.23 PMThe most common reasons given for going for a HIV test was being referred by a doctor due to HIV-related symptoms (29.2%). 

The most common place for getting a HIV test done was in a NGO run VCT centre (34.2%). 

78.9% of participants reported having had a CD4 test done. 

Majority (73.8%) of the study participants sought government hospitals or government clinics for HIV consultation while 4.8% went to private hospital/clinic 

Only 10.9% had had a viral load test done. 

The average self reported baseline CD4 was 363 cells/mm3

The average duration of time that CD4 test was done after HIV diagnosis was 25.4 months (median: 12 month, range: 0-160 months)

Health Seeking behaviour and associated costs


Less than half (40.6%) visited their doctors, nurses or health workers once a month while seventeen percent visited only when they are sick. 

28.1% respondents reported of being sick within 6 months prior to the interview and 34.5% of them required hospitalisation and average cost of treatment was 5,457 NPR (56.3 USD). 

Only 6.7% of those who were sick and hospitalised mentioned that they received some sort of subsidy and 60.4% reported that they paid out of their pocket for their treatment.

Stigma and Discrimination


47.3% of participants had disclosed their HIV status to someone other than their spouse, close family member or health care worker. 

4.1% of participants who disclosed their status had been forced to change their residence or were unable to rent accommodation because of their HIV status.

2.25% of participants reported having been denied health services due to their HIV status. 

11% of participants reported having had their HIV status disclosed by a health care professional without their consent. 

47.4% of participants were confident that their medical records were being kept completely confidentially.

 

Relationship with Health Care Provider


27% of participants on ART agreed or strongly agreed that they were sometimes insulted when talking to their HCP.

47% of participants on ART agreed or strongly agreed that their HCP made them feel comfortable when discussing any issues. 

78% of participants on ART agreed or strongly agreed that their HCP had told them of the possible side effects of their ARVs.

86% 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


45 respondents reported to be current injecting drug users.

46.7% of PWID reported that they were able to get access to clean syringes whenever they needed them. 8.9% reported never having access to clean needles.

36.8% of respondents with a spouse or partner reported that the HIV status of their partner was negative or unknown.

51.3% of respondents reported being able to get condoms whenever they needed them. 25.1% were never able to get condoms.

 

Reproductive Health


69.9% of respondents have children, of whom 26.9% are known to be HIV positive. 

29.5% of  respondents with a spouse/steady partner had received counselling on child baring since being diagnosed with HIV. 

32.6% of respondents who had a desire to have children reported being coerced into being sterilised. 

14.3% of respondents in a relationship, or their spouses, had become pregnant since being diagnosed.

The majority of those pregnancies were intended (69.4%)

Treatment of Co-Infections (TB and HCV)


26% were diagnosed with TB after being diagnosed with HIV. 

97.3% of those received treatment and 96.8% of those had completed treatment. 

39.9% of respondents were provided with information on Hep C. 

44.6% of respondents were offered a HCV test.  

35.7% (230) of those tested were found positive for HCV.

12 had received treatment for Hep-C.

 

The average cost of treatment was NPR30,090.

 

Treatment Literacy


Screen Shot 2014-07-18 at 6.18.10 PMHIV 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 13.47. 4.6% of respondents scored a 0 and 25% scored between 1 and 10. 

Only 7.6% had used the internet to search for HIV related information.

 

ART Regimen and Self-reported Adherence


67.5% of participants were on ART and only 3 respondents who were eligible were not on ART.

The majority of those on ART were taking Ziudovudine + Lamuvudin + Nevaripine (37.3%). 

Among the current ARV users, 72.9% reported taking 95-100% of their ARVs while 27.1% reported taking less than 95% of their drugs.

29.4 % of respondents were still on Stavudine.

3.3% percent of the study participants were not aware of what ART is. 

Of the 1,078 study participants who were taking ART, 54.4% were taking ART for three years and above. 

3.1% percent of those taking ART delayed their initiation of ART treatment despite their eligibility.

Screen Shot 2014-07-18 at 6.20.25 PM

70.6% of participants on ART reported to have never missed a dose of their ARVs. 3.6% have reported to miss an appointment with HCP within 3 months prior to interview. 

69.2% of those who missed an appointment cited being busy as the reason.

Long Term Side Effects (self reported)


69.9% of participants on ART experienced at least one of the listed long-term side effects.

16.2%  were told by a clinician that their body fat has changed due to side-effects of ARV

48.5% reported to have felt numbness in the limbs

7.7% reported to have had problems with the liver

National Association of PLHA in Nepal (NAP+N)


NAP+N is a non-political, non religious, non-governmental, non-profitable, autonomous network of People Living with HIV/AIDS and as such, a platform for collaboration, cooperation, joint action and collective endeavor between PLHA and HIV/AIDS organizations in Nepal.

NAP+N is established in 2003 in order to combat this epidemic with the joint effort of PLHAs in Nepal. The common goal was “To unite all those living with the virus in Nepal and fight back”. Since its establishment with 30 members in first NCM from 8 districts of Nepal, it has expanded its regional office in 5 regions and 40 districts. More than 58 staffs in the region and central office are engaging to improve the quality of life of PLHAs and HIV AND AIDS free society. 120 PLHA organizations are affiliated to NAP+N and has estimated 7000 members. 61 PLHA organizations are getting financial support for institutional development, care and support for the PLHA’S in Nepal.

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