Key Findings


Average self reported baseline CD4 was 366.4 cells/mm3

56.2% of respondents received a viral load test 

The average duration between HIV diagnosis and first CD4 test was 13.2 months (median: 2.4 months, range: 0-188 months)

28.7% of those taking ART had experienced some delay in treatment initiation.

26.9% respondents reported having been sick in the 6 months prior to the interview and 41.1% of them required hospitalisation Average cost of treatment was 12,532 (127 USD) 

63.6 % of participants reported being able to get condoms whenever they needed.

4.6% of participants reported having had their HIV status disclosed by a health care professional without their consent. 

Among 187 PWID interviewed, 46.5% had no steady partner but 36.8% of those without a steady partner were sexually active and only 34.4% always used condoms.  

Among  PWID with steady partners, only 26 %  of those partners were known to be HIV positive. Only 34.4% always used condoms.

19% of respondents or their spouse were pregnant since their HIV diagnosis and only 9.5% of these were unintended.

34.2% were advised not to have children. 19.7%% reported being coerced to terminate pregnancy due to HIV status of mother

20.4% 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 


The 2011 IBBS conducted in in 19 cities confirmed that HIV prevalence among Key Affected Populations continued to rise, with an average prevalence of 27.2 % among PWID as compared to 20.8% in 2008; 1.6% among Male sex workers (MSWs) as compared to 0.9% in 2008; and 0.6% among Female sex workers (FSWs) as compared to 0.2% in 2007. Notably, however, an additional round of IBBS on FSW was conducted in 2009 finding the prevalence to be 0.97%. Amongst ‘Hijra’ & Transgender sex workers prevalence was 5.2% in 2011 lower than in 2008 (6.1%). The high prevalence of HIV infection amongst PWID was found consistent with their frequent and risky injection practices: Only 39 always used a clean syringe. Advancements in telecommunications are changing the nature and practices of sex work as sex workers and clients can now directly interact without the need of going through a third person. This has made female sex work diffuse and more difficult to access. Other than the key populations, evidence also exists of either HIV-related risk factors or infection among certain vulnerable populations, such as the spouses of at-risk persons, imprisoned populations, most at-risk adolescents and in certain occupational settings, including in some cases through nosocomial infection. HIV treatment, care and support facilities are available to PLHIV, in Pakistan, through 18 ART centres, 16 VCTC and 7 PPTCT sites. Under GFATM Round 9 13 CHBC sites has been established. The majority of the treatment, care and support facilities are confined to key cities.

 

Methods  


Screen Shot 2014-07-18 at 7.08.56 PMSample size was determined using proportionate sampling method with error allowance of 0.0035 and a target of 525 people living with HIV was set for Pakistan. 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 13 districts across Pakistan. A structured questionnaire was used to collect data. There were 14 sections and an interview in an average took 77 minutes to complete. A total of 11 data collectors were used. For ethical clearance The study proposal was reviewed and approval by a national institution Bridge Consultants Foundation, Karachi, Pakistan. All respondents were provided standard information on the study and a written consent was obtained. Data collection was carried out between 1st November 2012 and 28th February 2013.


1. HIV Second Generation Surveillance, Round IV IBBS Report, 2011
2. HIV Second Generation Surveillance, Round IV IBBS Report, 2011
3. HIV Second Generation Surveillance, Round IV IBBS Report, 2011
4. http://www.nacp.gov.pk/programme_components/hiv_prevention/hiv_care/

Soco-Demographics


Screen Shot 2014-07-18 at 7.14.59 PMThe mean age of respondents was 36.4 years.

67.8% of respondents were male, 30.1% female and 2.1% TG. 

39.4 % live in a rural area, 2.3% live in a small town and 58.3% in a large town or city. 

61.7% of respondents had a partner or spouse and were living with that person, 37.7% were single, divorced or widowed.

71.2% of all respondents reported being members of NGO or CBO and 12.2% did work in a HIV program. 

58.1% of respondents earned some form of income, on averaged PKR9,627 (97.8 USD)  per month.  

40.5% of respondents were either illiterate or could only  read and write. 

Less than 20% had a higher secondary or college level education. 

The average household size for all respondents was 6.7 people.

The most common self-identified risk group was injecting drug user (35.6%). 22.9% reported to be sex workers.

 

HIV Diagnosis and Pre-ART Care



Screen Shot 2014-07-18 at 7.16.49 PM The most common reasons given for going for a HIV test was due to a self perception of having risky behaviour (51.2%). 

The most common place for getting a HIV test done was in a government hospital (50.5%). 

89.5% of respondents reported having had a CD4 test done, and 56.2% reported having had a viral load test done. 

The average baseline CD4 was 366.4 cells/mm3

Majority (76%) of the study respondents sought government hospitals or government clinics for HIV consultation while 14% went to NGO clinic  

The average duration of time that CD4 test was done after HIV diagnosis was 13.2 months (median: 2.4 months, range: 0-188 months).

Health Seeking behaviour and associated costs


Just over half (56.2%) visited their doctors, nurses or health workers at least once a month while 8.4% visited only when they are sick. 

26.9% respondents reported of being sick within 6 months prior to the interview and 41.1% of them required hospitalisation.

An average cost of treatment was 12,532 PKR (127.2 USD). 

Only 14.9% of those who were sick and hospitalised mentioned that they received some sort of subsidy and 54.6% reported that they paid out of their pocket for their treatment. 

33.5% had received home-based care services.

Stigma and Discrimination


58.1% of respondents had disclosed their HIV status to someone other than their spouse, close family member or health care worker. 

49.3% of respondents who disclosed their status had been forced to change their residence or were unable to rent accommodation because of their HIV status.

51.3% of respondents reported having been denied health services due to their HIV status. 

4.6% of respondents reported having had their HIV status disclosed by a health care professional without their consent. 

52% of respondents were confident that their medical records were being kept completely confidentially.

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Relationship with Health Care Provider


45.4% of respondents on ART agreed or strongly agreed that they were sometimes insulted when talking to their HCP.

90.8% of respondents on ART agreed or strongly agreed that their HCP made them feel comfortable when discussing any issues. 

86% of respondents on ART agreed or strongly agreed that their HCP had told them of the possible side effects of their ARVs.

88.4% of respondents 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


34 respondents reported to be current injecting drug users.

73.5% of PWID reported that they were able to get access to clean syringes whenever they needed them. 14.7% reported never being able to access clean syringes

53.1% of respondents with a spouse or partner reported that the HIV status of their partner was negative or unknown.

63.6% of respondents reported being able to get condoms whenever they needed them. 16.6% were never able to get condoms.

Among 187 PWID interviewed for the study 46.5% had no steady partner, and only 36.8% of those who were sexually active reported using condoms consistently. Among those with steady partners, only 26% were known to be HIV positive.

Reproductive Health


69.1% of respondents have children, of whom 10.7% are known to be HIV positive. 

68.4% of  respondents with a spouse/steady partner had received counselling on child baring since being diagnosed with HIV.  

22.4% of respondents who had a desire to have children reported being coerced into being sterilised. 

19% of respondents in a relationship, or their spouses, had become pregnant since being diagnosed.

The majority of those pregnancies were intended (90.5%)

Treatment of Co-Infections (TB and HCV)


28% were diagnosed with TB after being diagnosed with HIV. 

98.6% of those received treatment and 93.1% of those had completed treatment. 

67% of respondents were provided with information on Hep C. 

37.9% of whom were offered a HCV test. 

39.5% (64) of those tested were found positive for Hep C.

54.7% of whom had received treatment for Hep C.

The average cost of treatment was PKR13,717.

 

Treatment Literacy


Screen Shot 2014-07-18 at 7.24.32 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 16.8. 8.5% of the total respondents had low treatment literacy, scoring below 5. Only 5% of respondents had used the internet to search for HIV related information.

Art Initiation


The average time on ART was 3.12 years.  Of the 414 who were taking ART, 45.4% (188) were taking ART for three years and above.

12.3% of respondents on ART had changed regimen at least once since starting treatment.

4.4% of the respondents were not aware of what ART is. 

28.7% (119) of those on ART had experienced some delay in treatment initiation.

 78.9% of respondents were on ART and only 6 who were eligible were not currently on ART at the time of the interview. An equal proportion of those on AR were taking Ziudovudine + Lamuvudin + Nevirapine (22.5%) and Ziudovudine + Lamuvudin + Efavirenz (22.2%) and 20% (83) of respondents were still on a Stauvoidine.

ART Regimen and Self-reported Adherence


Among the current ARV users,83.5% (345) reported taking 95-100% of their ARV drugs while 16.4% (68) reported taking less than 95% of their drugs.

The mean self-reported proportion of ARVs taken in the last month was 97.9%. 

64.5% of respondents on ART reported to have never missed a dose of their ARVs. 

16.9% reported to have missed an appointment with HCP in the 3 months prior to interview. 

40% of those who missed an appointment cited being busy as the reason.

Screen Shot 2014-07-18 at 7.27.42 PM

Long Term Side Effects (self reported)


82.1% of participants on ART experienced at least one of the listed long-term side effects.

59% were told by a clinician that their body fat has changed due to side-effects of ARV

54% reported to have felt numbness in the limbs

7% reported to have had problems with the liver

Ashar Alo Society Bangladesh


Website: www.theaplhiv.org.pk

Email:

APLHIV-Pakistan was established in 2006 and began operations in 2008. It was launched after joint discussions between the Government of Pakistan, and the UN agencies, under UNAIDS, came to the conclusion that there was a need for a nationwide network for the PLHIV community. The aim was to form a strong national response to the epidemic while ensuring the involvement of the PLHIV community. Today there are over 3000 registered members from across the country. APLHIV-Pakistan works to protect the rights of people living with HIV in Pakistan.

Vision:


The vision of the Association was” to ensure that PLHIVs in Pakistan have equal rights and live with dignity and peace.” 

Mission:


To improve the quality of life of PLHIV in Pakistan and provide them and their families a sense of belonging so that they may become an active member of the society.”

Legal status: 


 AAS was registered under the Ministry of Social Welfare (Reg-07153) dated 3rd Sept’2002 & NGO Affairs Bureau (Reg-NGOAB-2181), dated 28th December 2006.

Achievement: 


With the help of UNAIDS and APN+, APLHIV-Pakistan launched a free helpline which provides a valuable telephone counseling, referral services and peer education.

Under the Global Fund Round-9 Grant, APLHIV-Pakistan is implementing a community based monitoring programme, which allows for the PLHIV community to monitor, and provide feedback on, the services provided to PLHIV in the country. Community based monitoring has caused a positive change for the PLHIVs across the country. This is a new concept in Pakistan to have the community based monitoring over the services being given to the community, which is closely related to the objectives of the APLHIV. The successful implementation of this role has not only improved the quality of services but has also given a sense of empowerment to the community and created awareness about the rights of the PLHIVs. 

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