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More on the consultation on testing and counselling

Author: HimBur | Category: Englishno comments

One of the participants at last month's testing and counselling consultation in Phnom Penh has kindly shared this background paper with the [him] moderator. Do you think this community view was adequately taken into account in the final recommendations of the consultation?

http://www.hivinfo4mm.org/blog/_archives/2007/6/30/3058610.html

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Review of the experience of Most-at-Risk-Populations with the current HIV Testing and Counselling Policy and Practice in countries in Asia and the Pacific

DRAFT

Submitted by: William O’Loughlin

May 2007

This report has been prepared by Mr William O’Loughlin, with UNAIDS support, as a background issue paper for the WHO/UNICEF/UNAIDS Joint Technical Consultation on Scaling up HIV Testing and Counseling in Asia and the Pacific, 4-6 June 2007, Phnom Penh, Cambodia.

The designations employed and the presentation of the material in this publication do not imply the expression of any opinion whatsoever on the part of UNAIDS concerning the legal status of any country, territory, city or area or of its authorities, or concerning the delimitation of its frontiers or boundaries.

The mention of specific companies or of certain manufacturers’ products does not imply that they are endorsed or recommended by UNAIDS in preference to others of a similar nature that are not mentioned. Errors and omissions excepted, the names of proprietary products are distinguished by initial capital letters.

UNAIDS does not warrant that the information contained in this publication is complete and correct and shall not be liable for any damages incurred as a result of its use.

This is a draft document to be finalized, please contact UNAIDS Regional Support Team for Asia and the Pacific at the address below for final version:

UNAIDS Regional Support Team for Asia and the Pacific, 9th floor, UN Building, Rajadamnern Nok Avenue, Bangkok 10200 Thailand.
Tel: (66) 2 288 2185, Fax: (66) 2 288 1092, Email: rstap@unaids.org

Table of Contents

Executive Summary

3
Recommendations

8
Methodology

11
1 Components of practice of HIV counselling and testing

12
    1.1 Informed consent
12
    1.2 Confidentiality
13
    1.3 Counselling
15
         1.3.1 Pre- test counselling
16
         1.3.2 Post-test counselling
17
    1.4 Outcome of testing negative
18
1.5 Outcome of testing positive

18
2. Key factors that affect access to testing and counselling
20
    2.1 General lack of attention to testing and counselling
20
    2.2 Attitude of testing provider
21
    2.3 The financial cost of testing
23
    2.4 Reporting of names and addresses
24
    2.5 Failure to promote government testing policies
24
    2.6 Level of basic HIV knowledge
25
    2.7 Availability and access of testing and counselling
27
    2.8 Care after testing
28
    2.9 Stigma and discrimination
29
2.10 Women and HIV Testing and Counseling

32
3. Specifics for Most At Risk Populations
35
    3.1 Female commercial sex workers
35
    3.2 Men who have sex with men
37
    3.3 Injecting drug users
40

References
42

Executive Summary

There is strong evidence that there has not been satisfactory attention given to HIV testing and counselling, including the specific practice of Voluntary Counselling and Testing (VCT) in the Asia Pacific region. This is demonstrated by the lack of studies, documentation and investigation of practices and models of HIV testing and counselling. There has been insufficient attention to support and monitoring of HIV testing and counselling at national level. One consequence is that health care workers involved in HIV testing and counselling have poor standards and follow improper practices and procedures. Some places have recently improved testing and counselling approaches and services, but this has occurred within a neglected background, and problems with standards and quality remain.

The consequences of this lack of attention to testing and counselling by policy makers, program developers and funders is that, too frequently, those people who do experience HIV testing and counselling are being given poor service, often with avoidable harmful distressing and, sometimes, life-threatening consequences. This is particularly common within populations considered most at risk of HIV.

This lack of attention to developing good quality HIV testing and counselling services, coupled with the harmful experiences of those who do experience the current services, could significantly contribute to the low numbers of those willing to be tested in the region.

There are a small number of reports and papers that consider HIV testing in the Asian region. Of these a tiny number actually focus specifically upon VCT. This in itself indicates the neglect of this critical area of intervention in the response to HIV. There appears to have been no specific work conducted in the Pacific region.

Consistently these documents identify major problems and flaws with current practices of testing and counselling. These are reinforced by anecdote and comments from observers, advocates and community based organisations.

The agreed international HIV testing and counselling protocols and policies regarding informed consent, confidentiality, respect for the client, absence of stigma and discrimination in the health care setting, and pre and post test counselling are consistently not followed. The reasons why these guidelines were initially created still apply. A client has the right to basic respect, to be provided with the information needed to prevent HIV transmission, and protection from stigma and discrimination. This is the basis of a sound public health approach regardless of circumstance. They are also core components of an integrated response to HIV wherein testing and counselling are parts of an education and prevention, care and support, and social and ethical dimensions continuum.

HIV services need to be designed to meet the needs of the populations they wish to serve. This should be the primary guiding design principle. In situations where this has happened people will freely use such services. Those designed and operated for other purposes will struggle and be controversial. Services for most at risk populations (MARPs) need to consider their primary health care needs, and in the context of the social and environmental factors affecting their lives, behaviours and identities. This requires attention to such issues as gender, applying a development context for analysis and design, and using a sexual health and harm reduction framework.

In addition, people will not want to be tested unless they perceive a benefit. They need to see that their care, support, medical and treatment needs will be met. Such services must be accessible. Too frequently they are not available at the local level. They also must be within the means of the poor, the unemployed, the homeless and illegal residents.

Consistently studies show that people have low levels of HIV knowledge. Signific

antly there are also high levels of misunderstandings about HIV. These misunderstandings can co-exist with correct knowledge about HIV. It is important that HIV education programs specifically provide strategies for removing misunderstandings about HIV. It has been demonstrated that possessing correct and comprehensive knowledge about HIV, including indications of local context and risk, increases people’s willingness to be tested. Importantly, correct knowledge about HIV also decreases the likelihood of people stigmatising HIV and discriminating against those affected by HIV. Hence effective comprehensive HIV education programs are critical. Many most at risk populations have not been provided with suitable HIV education and prevention.

The quality of HIV testing and counselling provided by health care systems and practitioners cannot be criticised if they have not been provided with the appropriate capacity development and resources to enable them to provide suitable services. Attention needs to be given to capacity development of the health care system to ensure it has the staff, systems, resources and medications to properly facilitate HIV testing and counselling and provide for its outcomes. This should also involve the development of models and programs that involve people living with HIV/AIDS (PLWHA) and peers from most at risk populations in service design, monitoring and delivery. Services providing VCT need ongoing training for staff, systems for quality control and supervision, and monitoring and evaluation processes. Public health systems need to ensure that clients have the means to prevent transmission of HIV and that PLWHA have access to medicines for Opportunistic Infections and ARVs, and to care and support.

In the Asian region in particular often the lives of those most at risk of HIV are already characterised by stigma and discrimination. This becomes compounded by the stigma and discrimination associated with HIV and AIDS. Frequently these populations already have difficulty accessing health and welfare services due to this stigma and discrimination. The experiences of these populations with HIV and AIDS to date indicate that these barriers and obstacles will only become more complex and thus prevent them from accessing HIV services. Hence strategies must address the root causes and sources of this stigma and discrimination. This requires comprehensive and local analysis of the social, political, cultural, and structural factors involved. But more significantly it actually requires real commitment and effort to doing something about this stigma and discrimination.

There is a strong argument that, comparatively, the overall response to HIV has profoundly neglected attention to reducing stigma and discrimination. The evidence for this comes from a range of areas: the failure to properly support the effective and meaningful involvement of PLWHA in the response; the failure to develop substantial and effective strategies and programmes that reduce the stigma and discrimination experienced by members of most at risk populations; the failure to develop national legislation and policies that protect the rights of members of most at risk populations and of PLWHA; and the small amount of resources, budgeting and programming dedicated to stigma and discrimination compared to those available overall for the response to HIV.

Generally, across the Asia Pacific region, there is every indication that insufficient attention has been given to developing good quality HIV testing and counselling services that properly and completely implement the VCT guidelines. Until this has happened, and accompanying attention has been given to understanding the most suitable ways, methods and models for providing access to testing and counselling for most at risk populations, then it cannot be claimed that VCT has not been effective or suitable.

There is also every indication that HIV testing and counselling cannot be considered in isolation. Many people who are at risk of HIV are ignorant about HIV and/or do not realise they are at risk .The consequences of HIV testing have profound negative impacts for many of those who are tested, and particularly so for those most at risk of HIV infection. In the most extreme circumstance people are being killed or killing themselves because of their HIV status. Unless strenuous effort is given to, and resources provided for, removing or reducing the causes of these consequences, both within health systems and on a wider social scale, then there are limited benefits for individuals to be tested and to know their HIV status. The benefits can only come when they are provided with: respect within the health service; appropriate education and information; access to care, support and medical treatments; and protection from stigma and discrimination.

Of the recommendations arising from this paper there are a set that contain the basis for strategically addressing HIV testing and counselling amongst MARPs in the Asia Pacific region and which incorporate the other more specific recommendations. This main set of recommendations is:

• National Testing and Counseling strategies are required that identify policies and guidelines, conduct trials of different models of accessible good quality testing and counselling, and are properly supported by resources to enable implementation, capacity development, data collection and monitoring.

• Comprehensive HIV education must be provided to all, with a priority on MARPs, it should address all aspects of transmission and treatment, ensure that myths and misconceptions are addressed, and place HIV risk in local context.

• Since the availability of good quality care and support services influences people’s willingness to be tested they should be affordable and locally available to MARPs and be designed to take a comprehensive approach to the specific health promotion, prevention and treatment needs of the population.

• To improve HIV testing and counselling practices among MARPs, attention must be given to the structural barriers created by the stigma and discrimination associated with the factors and behaviours that make them vulnerable to HIV, and effective strategies found for reducing or removing these barriers.

• Resources and capacity development must be provided for the health care system to ensure it has the staff, systems, resources and medications to properly facilitate HIV testing and counselling and provide for its outcomes. This should also involve the development of models and programs that involve PLWHA and peers from most at risk populations in service design, monitoring and delivery. Services providing HIV Testing and Counseling need ongoing training for staff, systems for quality control and supervision, and monitoring and evaluation processes.

Recommendations

Regarding components of the practice of HIV Counselling and Testing

• The right of clients to give informed consent to HIV testing must be respected and, to enable this, health systems and personnel must be provided with the necessary resources and support.

• To ensure confidentiality, and thus attract people to a service for HIV testing, support must be given to developing and maintaining appropriate policies and practices, monitoring that involves client participation, and ongoing institutional and human resource capacity development.

• Strategies should be developed to establish innovative outreach programs operated by peer-based counsellors.

• The infrastructure, resource and financial needs of HIV counsellors need to be addressed and provided to ensure the quality of the counselling.

• To prevent transmission of

HIV and reduce stigma and discrimination a specific focus of pre test counselling must be to identify the myths and misconceptions that people have about HIV and AIDS.

• Pre test counselling must be clear and precise in trying to identify a person’s risk behaviours and providing comprehensive education and support for changes necessary to prevent transmission.

• The families of PLWHA need to be provided with education about HIV transmission and the care and support of PLWHA.

Key factors that affect access to testing and counselling

• National VCT strategies are required that identify policies and guidelines, conduct trials of different models of accessible good quality testing and counselling, and are properly supported by resources to enable implementation, capacity development, data collection and monitoring.
• Health care workers need to be educated about the transmission, prevention and treatment of HIV, including misconceptions, so that they can provide good quality services including testing and counselling.

• Local sociocultural beliefs about health care workers and their relationships with their clients need to be addressed to create a more suitable setting for dealing with HIV.

• The public health system needs to be supported to: encourage good quality health care worker and client relationships; ongoing education and training about HIV; and improve the quality of performance and practice.

• PLWHA should be involved in innovative HIV care models.

• Financial cost should not be a barrier to accessing VCT and subsequent medical and treatment needs.

• Comprehensive HIV education must be provided to all, with a priority on MARPs, addressing transmission and treatment, including myths and misconceptions, and place HIV risk in local context.

• HIV testing and counselling facilities need to be appropriately located, easily accessible and designed to be user-friendly.

• Strategies to reduce HIV related stigma must address its social and structural dimensions.

• The active involvement of PLWHA must be supported across all levels of the response to HIV and this must be accorded equity of resources, capacity development and strategies to ensure their ability to operate as true partners in the response to HIV.

Specifics for most at risk populations

• Strategies for providing HIV education to sex workers need to be based in an analysis of their personal and workplace risk factors.

• Research needs to be conducted to provide greater understanding of specific most at risk populations’ attitudes to, and uses of, HIV testing and counselling.

• HIV testing and counselling services used by sex workers should follow the guidelines established to provide suitable information and counselling before and after testing, respect confidentiality and informed consent, provide access to the means to prevent transmission, and to care and support services.

• Strategies to address HIV testing and counselling amongst sex workers need to allow for the stigma associated with sex work and other personal behaviours such as drug use.

• Men who have sex with men should be educated about the benefits of testing and counselling and be encouraged to seek these services

• HIV testing and counselling strategies need to acknowledge the stigma associated with male to male sex and recognise that it is not easy for many men to disclose as men who have sex with men and hence attend health centres. Special strategies and services need to be provided to ensure safety, confidentiality and respect.

• Strategies that create a supportive environment for men who have sex with men will enhance their use of HIV testing and counselling other health education and services.

• To improve HIV testing practices among IDUs attention must be given to structural barriers created by the stigma and discrimination around drug use, the poverty and circumstances of IDUs, and the capacity of the health system to provide for their needs

• Strategies addressing women and HIV testing and counselling need to consider the contexts of these women’s lives and ensure they are provided with comprehensive HIV education and services, freely have access to services, and are protected from stigma and discrimination whilst being tested and diagnosed.

Methodology

The objective of this paper was to reflect the experience of the HIV affected communities (most at risk populations, vulnerable groups and PLWHA) with the way that HIV testing and counselling has been, and is currently, provided in the Asia Pacific region. The brief given for achieving this was to review the literature on the topic in a range of forms such as peer-reviewed, non-peer reviewed papers, conference and meeting presentations, and reports from projects and personal testimony. It was also proposed to conduct limited interviews with selected groups representing most at risk or vulnerable populations.

A literature review of peer reviewed papers was conducted. Presentations at recent regional HIV conferences were investigated and pursued. The background to, and purpose of, the paper was publicised on numerous eforums across the Asia and Pacific regions. Personal responses provided information or suggestions for additional sources to investigate. Direct contact was made with each of the regional networks representing most at risk groups or PLWHA. In addition the consultant took advantage of visits to Papua New Guinea, Myanmar and Thailand to conduct discussions about HIV testing with providers, affected communities and policy makers.

When it came to writing the paper it was necessary to determine the most suitable way to present information gathered informally. The most effective way to proceed was by shaping the contents of the paper around the peer reviewed papers and documentation that arose from consultative processes and inputs. Then this was substantiated or added to by informal sources.

There are sections in the paper that contain little information. This reflects the lack of information that was available in written sources.

Countries are named in this paper. Usually this is because the documents identifying them are in the public domain. It is not intended to appear to be critical of these countries by naming them. Instead it is to their credit that work has been undertaken in them, in far too many other countries it does not appear that much attention has been given.

1. Components of the practice of HIV Counselling and Testing

1.1 Informed consent

The practice of informed consent should be an essential component of the practice of any kind of HIV testing, including VCT. However, across the Asia Pacific region it appears that there are many circumstances in which it is not properly followed. Often the causes for this are associated with poor understandings of the rights of people and patients, questionable public health testing policies and practices, and lack of attention to training VCT providers and promoting VCT guidelines and practices.

An Indian study indicates that at least 2 out of 9 hospitals do not routinely inform women that they are tested for HIV.(Brown, 2001) A 2004 Chinese study on pregnant women found it

was common for them and all surgical patients to be tested for HIV without their knowledge. Hospital policy was for so-called “anonymous” HIV testing (testing for HIV without the patient’s knowledge). Thus hospital staff was testing subjects who had refused HIV testing in the study conducted within the same hospital. Patients were told that they were getting blood drawn to test for many conditions, but not specifically for HIV. Patients with negative HIV results received a written report stating their results were normal. Patients who tested positive were reported to the local Center for Disease Control which then contacted the patient and repeated the HIV test using a pre-and post-test counselling format. (Khoshnood et al., 2006)

Empower Foundation Thailand with two decades experience working with sex workers, including providing counselling on testing and seeing around 30,000 workers per year, comment that ‘ a telling fact is that we have never heard of anyone deciding against taking an HIV test after their pre-test counselling. It is not an option.’(Empower)

NGOs also point to the fact that in most countries in the region the majority of people have very poor understanding of their rights. Hence people do not assert themselves with health care workers, and health care workers are not being challenged over the quality and style of their service delivery.

There are contexts in which informed consent is not considered, where it is policy to compulsorily test particular populations. Taiwan for example has compulsory testing of pregnant women, prisoners, soldiers, draftees, foreigners, drug users, sex workers and their clients, hospital staff, airline staff and police. Also several private enterprises and companies ask their employees to do HIV testing. The compulsory testing is definitely without counselling (and consent). (E-Ling Chiu., 2007)

In Bali, Indonesia, testing is compulsory for injecting drug users (IDUs) to enter rehabilitation programs, 21.1% of IDUs were required to be tested by a hospital or rehab program. For 42.1% of these there was no individual pre-test counselling (although group counselling may have occurred in rehab centres). For those who received counselling, informed consent was included as a topic in 10% of the cases and confidentiality in 15.8%. (Sawitri, Sumantera, Wirawan, Ford, & Lehman, 2006)

Health care providers need to appreciate their responsibility for creating the appropriate context for informed consent. The circumstances and dynamic between the health care worker and the client need to be genuinely structured so the client knows it is ultimately their personal decision to make an informed choice to be tested.

It appears that informed consent is frequently not practiced in a range of settings. Furthermore it is likely that, in many instances, those responsible for testing policies and practices are aware of the guidelines regarding VCT and choose not to implement them. This suggests health care institutions and professionals either will not follow international policy guidelines or will modify them to suit their institutional situation.

Recommendation:

• The right of clients to give informed consent to HIV testing must be respected and, to enable this, health systems and personnel must be provided with the necessary resources and support.

1.2 Confidentiality

Confidentiality is a crucial issue due to the stigma of HIV. Concerns about confidentiality may lead to some persons not undergoing testing or to experience more anxiety.(Sawitri, Sumantera, Wirawan, Ford, & Lehman, 2006)

Specific studies of testing report confidentiality not being practised. Indonesian IDUs report that in 15.8% of instances either other people knew the results of their tests before they did or there was no confidentiality at all. (Sawitri, Sumantera, Wirawan, Ford, & Lehman, 2006) In the experience of some PLWHA in Taiwan, nurses in the local health centre tell the positive result to the parent of PLWHA because they are careless.(E-Ling Chiu., 2007)

The problem regarding lack of attention to confidentiality appears to be widespread. This is demonstrated by comments about practices on a wide-scale national level.

There is anecdotal evidence of a widely held belief in Cambodia that there are two types of testing centres in the country – those where confidentiality is respected and those where it cannot be expected.(Fletcher, 2003) Vietnamese data suggests that confidentiality is rarely observed, particularly at the local level where both the Ward Health Stations (providers of basic free primary care) and the Ban Guip Ban (government funded peer support groups) maintain ‘lists’ of PLWHA. (Maher, 2007)

In China, whilst HIV sentinel surveillance is carried out on high-risk groups on a compulsory anonymous unlinked basis, it is known that anonymity is not always maintained and that feedback does sometimes take place. (Hesketh, Duo, Li, & Tomkins, 2005)

The problematic consequences of the lack of respect for confidentiality are described in a discussion of the implications and consequences for IDUs with HIV in Vietnam. ‘Trust in the health system and its workers was undermined by a profound lack of confidentiality, a situation that is, at best, unethical, but also questionable in terms of human rights. The willingness of PLWHA to access the health system will ultimately be determined by the perceived costs and benefits of accessing care, particularly the costs associated with stigma and discrimination.’ (Maher, 2007)

There are instances of policies and practices around confidentiality creating confusion for health care workers. HIV counsellors in Papua New Guinea fear some of their clients are having unprotected sex, yet these counsellors are unsure of how to deal with them and their partners due to national legislation about HIV protecting the confidentiality of HIV testing. (This may be due to HCWs lack of education about the meaning and interpretation of the legislation. In which case it indicates the need for HCW education and ongoing monitoring of practices).

In Indonesia there are HIV working groups at institutional levels which monitor HIV services including testing. Some of these report no concerns from clients regarding confidentiality due to the counsellors convincing them that confidentiality is guaranteed. They also note that some HCWs misunderstood the meaning of confidentiality and tend not to share serostatus information with anyone else even when required for follow up counselling and case management.(Burnet, 2007)

There are examples of improvements in practicing confidentiality due to specialised training of HIV counselors and implementing HIV testing and counselling monitoring programmes. A report from an Indonesian HIV working group recognises that breaches of confidentiality still occur. They cite a senior doctor violating client’s confidentiality to relatives and others in the care setting. But this was identified as part of the monitoring process and the patients were complaining about it to the counsellors. This indicates client’s awareness of their rights coupled with the likelihood that action will be taken by the relevant authorities. The report states that the quality of service, including observance of confidentiality, within NGOs providing HIV testing and counselling services have been improved by training and capacity building provided by external providers to both counsellors and management. Furthermore, this is given as the reason for an increase in clients coming to these NGOs for testing and counselling. However, the report states that ‘somehow the client will still obtain disappointment with services in the government hospital.’(Bali)

Problems with confidentiality appear to be widespread. Concerns about lack of confidentiality will cause people to not use the health system either for testing or other services.

If confidentiality is

respected and the service is of a good quality then people will come for testing. This requires attention to policies and practices, establishing monitoring systems that include client participation, and training of health care workers as part of a capacity development approach to the entire institution where the HIV testing occurs (involving a comprehensive assessment of organisation wide matters to be addressed to develop good quality services).

Recommendation:

• To ensure confidentiality, and thus attract people to a service for HIV testing and counselling, support must be given to developing and maintaining appropriate policies and practices, monitoring that involves client participation, and ongoing institutional and human resource capacity development.

1.3 Counselling

Consistently there are reports of the poor standard of counselling, even, at times, the complete absence of counselling when HIV testing was conducted. The fact that counselling was a new practice to some countries is also cited as a reason for the difficulty in implementing it.

The Empower Foundation’s comments on the problems with counselling in Thailand reveal problems that could be common in many Asian countries. ‘Counselling was a foreign word and concept introduced to Thailand in the early 1990’s in response to the alarming number of people committing suicide after being told they had AIDS. At that time testing was already “Provider-initiated” with people being tested with little or no knowledge or consent. Despite all the counselling training, policies and programs, the philosophy of “pre-test counselling” has taken well over a decade to translate into the Thai context. Still now, in 2007, for most providers pre-test counselling remains a series of questions you ask a patient before taking their blood. A telling fact is that in 20 years we have never heard of anyone deciding against an HIV test after their pre-test counselling. It is not an option. In Thailand at least, pre test counselling is not a process to allow the person to reach an informed decision about whether they want an HIV test or not’(Empower)

In Taiwan the testing and counselling provided in hospitals is not very popular. Mostly it is not counselling but health education and is given by nurses not counsellors. As a result people just want to know the results without other information. Consequently people get tested repeatedly and frequently because they don’t accept a negative result. Non-hospital based outreach programs operated by volunteer counsellors who are men who have sex with men or former sex workers are more acceptable, however they lack proper counselling training. (E-Ling Chiu, 2007)

In rural India the majority of tests were done without adequate counselling. PLWHA were taunted about sexual relationships whilst being given test results, misleading information was given about the meaning of having HIV, and limited knowledge was provided on treatment options, sexual behaviour, and prevention of mother to child transmission.(Pallikadavath, Garda, Apte, Freedman, & Stones, 2005)

The testing experience of Vietnamese IDU PLWHA was that ‘test results were often given without empathy, consideration, or pre and post test counselling’ and ‘ some participants reported not being informed of their test result and only learning of their positive status by default or family members.’ (Maher, 2007)

Reports from Indonesia indicate that a counsellor’s background and experience is an important element in making the client feel at ease. The use of peer counsellors has been very successful. ‘Clients feel more comfortable when they do counselling with the counsellor from NGO not with the counsellors from VCT clinics especially in hospital. The main reason is because counsellors in NGO is peer counsellors too, so they will have empathy and know client’s situation… most of them have the same background with their clients. For example the counsellors for IDUs, most of them is ex IDUs, for transgender clients, the counsellors is transgender too.’(Bali)

The lack of skills remains a problem for Indonesian counsellors. Attention has gone towards setting up processes and systems and the counsellors are not judgemental and are warm towards clients, but they lack counselling skills. They have a simplistic approach that because a client is concerned about exposure to HIV then they should be tested. They follow the guidelines for pre test counselling without actually preparing the client or exploring their readiness to be tested and cope with the results. Similarly, their discussion on risk behaviours does not move beyond identifying risk activities and providing prevention information. Their counselling does not explore behaviour change.(Burnet, 2007)

Communication from India states that the role of HIV counselling has gained respect in hospital HIV testing facilities, but that this has been slow. In order to develop the capacity to respond to demand, attention needs to be given to: more practical training of counsellors; more resource material on counselling and HIV; more and better facilities; the ability to be mobile and move into the community: job security and permanency; and attention to reporting and monitoring to address quality issues.

Recommendations:

• Attention must be given to the proper training of counsellors to provide them with the ability to engage clients in a sensitive and appropriate manner and to address issues of behaviour change and coping with the outcomes of test results.
• Strategies should be developed to establish innovative outreach programs operated by peer based counsellors.
• The infrastructure, resource and financial needs of HIV counsellors need to be addressed and provided to ensure the quality of the counselling.

1.3.1 Pre-test counselling

The quality of comprehensive pre-test counselling is indicated by the problems with informed consent and confidentiality.

In Indonesia the main focus of pre-test counselling was preparation for the test results. A large focus was general discussion of HIV transmission, risk behaviours and protection. The focus was on cleaning needles and not sharing (15.8%), condom use (10.5%) and screening for other diseases. Considering these clients were all IDUs it raises concerns about the adequacy of counselling given the large percentage that received no pre test counselling about preventing transmission. This study was done in 2002 in a province of Indonesia that had been a major focus of international HIV assistance for some years. It shows an inability to follow the guidelines for pre-test counselling. (Sawitri, Sumantera, Wirawan, Ford, & Lehman, 2006)

A significant focus of pre-test counselling needs to be the misconceptions and myths that people have about HIV. It is not sufficient to only focus upon knowledge of the basics of transmission and prevention for this may fail to encompass other beliefs people may have about HIV. It is essential to investigate personal beliefs to ensure a proper understanding of the HIV epidemic. This is important not just for prevention but also because of the link between inaccurate beliefs about HIV and HIV related stigma and discrimination. Knowing how HIV is not transmitted is critical for preventing stigma and discrimination against people living with HIV/AIDS. (Rogers et al., 2006)

Recommendations:
• To prevent transmission of HIV and reduce stigma and discrimination, a specific focus of pre-test counselling must be to identify the myths and misconceptions that people have about HIV and AIDS.
• Pre-test counselling must be clear and precise in trying to identify a person’s risk behaviours and providing comprehensive education and support for changes necessary to prevent transmission.

1.3.2 Post-test counselling

There are failures to conduct post-test counselling properly, particul

arly when it necessitates discussing sexual behavioural matters.

MSM in Chennai India often did not receive appropriate post-test counselling. Sometimes they were unable to understand all that was being said due to being in shock at the diagnosis of being HIV positive. At other times the ability of post-test counselling to assist the person to cope with the diagnosis and integrate it into his personal and sexual life was compromised. This was either because the client was frightened to tell the counsellor about being homosexual, or the counsellor didn’t ask, or, when told, the counsellor ignored the information. In addition no follow-up counselling was provided for on-going support after the single session of post-test counselling. (Chakrapani, 2004)

Commonly upon being diagnosed with HIV people are not told how to manage their sexual life. Indian MSM with HIV believe that health care providers do not like HIV positive people to be sexually active. In some instances no safe sex information was given at all, or different providers gave different and conflicting safe sex messages. HIV positive MSM married to women were given prevention information for male to male sex but nothing about sex with women, nor more general information and assistance on how to deal with being married and diagnosed with HIV.(Chakrapani, 2004)

That PLWHA in rural India also had limited knowledge about how to live with HIV infection demonstrates the inadequacy of post-test counselling. They had poor knowledge of treatment options for Opportunistic Infections, of the care to be taken to avoid infecting others, and of prevention of mother to child transmission. They also believed they could infect others via physical contact, that sex should be avoided to reduce the impact of the disease on themselves, and they sought out quacks and traditional healers claiming to cure HIV. Being HIV positive was seen as the end of sexual activity often due to medical advice, rarely had advice about condoms been given, and usually there was no advice on having sex. Knowledge regarding anti retrovirals was very limited. (Pallikadavath, Garda, Apte, Freedman, & Stones, 2005) Some of the women in the group had not even been properly informed that they had HIV; instead vague references were made to blood disorders. Some women were unaware of their HIV status for a long time as neither the doctor nor her family had told them. There were also instances of men not revealing their status to their wives.

Post-test counselling can be essential to assist people to understand the meaning and consequences of the results of their HIV test. This is particularly the case in settings where people have limited knowledge about HIV and where their options for sources of information and education are also limited. In such circumstances the health worker conducting the counselling has a critical role. Attention needs to be given to ensuring that the counsellor possesses the skills and knowledge to conduct this role properly and that they also have the training and capacity to demonstrate the sensitivity and respect that clients require.

1.4 Outcome of testing negative

One important aspect of post-test counselling that is usually left out or taken for granted is the follow up program for those who are tested negative. It was not possible to find any detailed discussion of this or to gain any understanding of the extent to which it is practised and its quality. The report from the HIV working group in Indonesia stated that most VCT programs in Indonesia have not developed a comprehensive program for those who are HIV negative. (Burnet, 2007)

1.5 Outcome of testing positive

The major issue commonly found amongst those who tested positive to HV was associated with stigma and discrimination.

The fear of a positive HIV result was suggested in studies that provided participants with HIV tests and had low rates of return for results, 38% amongst MSM in China and 55.3% amongst pregnant women in Vietnam. This was attributed to fear of stigmatisation. In addition, amongst the pregnant women, education level was strongly associated with the failure to return for results, indicating the need to provide information in clear simple terms for people to understand. (Choi, Lui, Guo, Han, & Mandel, 2006; Dinh, Detels, & Nguyen, 2005)

The fear of the negative consequences of disclosing HIV status prevents some from telling others, in particular sexual partners. The fear of HIV in China caused MSM PLWHA to keep their HIV status secret from other MSM including those they had sex with. They were sure they would be shunned, rejected or abandoned by other men. Sometimes this lead to not insisting that their partners used condoms. Similarly they were unable to inform previous partners of their possible exposure to HIV. When they did attempt to share the news the results often reinforced their fears. The multiple stigmas associated with homosexuality and HIV prevented them from accessing other PLWHA and HIV support services because they blamed themselves for acquiring the infection and felt inferior to other PLWHA who had acquired HIV through blood transfusion or injecting drug use.(Zhou, 2006)

The psychosocial aspects of living with HIV are heavily influenced by the stigma and discrimination associated with HIV and AIDS. In Vietnam the close epidemiological associations between HIV, injecting drug use and sex work are exacerbated by the pre-existing stigmas attached to the ‘social evils’ of drug use and sex work. This also applies beyond the individual who is diagnosed. One of the major decisions a PLWHA faces concerns disclosure to family. In Vietnam not all families understand about HIV and may fear infection, the stigma of association with HIV, or may be ignorant about caring for a person with HIV/AIDS. Consequently isolation or abandonment of a PLWHA was not uncommon.(Maher, 2007)

Stigma and discrimination also impact on the capacity of both individuals and families to maintain their livelihoods causing concerns to keep HIV status secret from surrounding communities out of fear of their reaction and possible loss of employment or income. (Maher, 2007)

On the other hand families can also be important sources of support. For Chinese MSM with HIV their families were significant source of support even allowing for the constraints created by their sexual practices and identification. Families are thus also profoundly affected by the social attitudes towards HIV and the identities, practices and behaviours associated with it. (Zhou, 2006) This highlights the importance of educating family and community members about transmission and care and support.

The indications are that the social, cultural and community contexts and meanings of HIV strongly influence the way that a person copes when diagnosed with HIV. This may be of particular importance in countries where the stigma and discrimination around HIV is affected by particularly powerful factors.

Recommendation:

• The families of PLWHA need to be provided with education about HIV transmission and the care and support of PLWHA.

2. Key Factors that affect access to HIV testing and counselling

2.1 General lack of attention to HIV testing and counselling at all levels, including at national.

There are only a small number of studies and publications about VCT in the countries of the Asian region. None of these include the Pacific. These publications consistently state that there has not been enough attention given to VCT. The small amount of attention given to research about VCT is an indication of the lack of attention given generally to VCT. This suggests that this area of critical HIV intervention and service has, comparatively, been much neglected within the overall response to HIV in the region.

The limited attention to testing and counselling at national l

evels, and which results in a general lack of associated data is reflected in a 2003 study of VCT in Cambodia. According to its author this is the only known comprehensive national study of its kind in the Asian region. At that time the report noted that usage of government VCT clinics was low and that no research had been done to investigate the reasons for it. Whereas a private clinic became so popular it introduced daily limits for free VCT. Although the data was inconclusive, there were strong indications that young people and pregnant women were not using public sector VCT services. Nationally the number of testing sites was unknown, as was the adequacy of the counselling provided or the accuracy of the testing procedures. There was a lack of coordination between those involved in VCT, particularly in relation to paying salary incentives, and developing coherent training, supervision, and monitoring and evaluation plans.

The critical factors affecting the standards and practices of VCT in Cambodia were identified as: the absence of a national forum for discussing VCT issues; that draft VCT guidelines were only then being developed; and the lack of technical capacity in an under-resourced VCT unit in the Ministry of Health. The report recommended that it was an opportune time to conduct trials of different models of testing and counselling in Cambodia. To the best of the author’s knowledge such trials were not conducted. (Fletcher, 2003)

In Indonesia, according to a well-placed HIV expert, VCT services are not promoted or properly practiced. The cost in many cases can be expensive [US$10 or more]. As an example of problems with the quality of service the custom of notifying negative results as ‘non-reactive’ and giving an index figure between 0 and 1 confuses patients who think this predicts likelihood of becoming positive. Moreover, counsellors are unable to explain its meaning. Generally, counselling is poor or effectively non-existent.

Regarding VCT in yet another country, a paper published in 2007 names China as failing to give attention to VCT. It says the low numbers being tested in China is demonstrated by the fact that the majority of known HIV infections had been identified through sentinel surveillance. The authors identify a broader problem - ‘But little is known about the acceptability and likely uptake of VCT in China or the best vehicle for testing’(Hesketh, Duo, Li, & Tomkins, 2005)

Also in China, where there is particular concern about MSM being vulnerable to HIV, a study published in 2006 says that HIV testing has not been promoted amongst MSM and that understanding of testing behaviours in that population is limited. Only three studies had been conducted about Chinese MSM’s testing behaviour and these were limited in their scope and analysis.(Choi, Lui, Guo, Han, & Mandel, 2006)

In Vietnam the slow roll out and diversification of VCT is indicated in a paper submitted for publication in 2006. At the time of study there were 17 tertiary level testing centres in Ho Chi Minh City, yet there were no anonymous testing sites providing free HIV testing, counselling and information in the city at that time (they have since been established). (Maher, 2007)

In a paper published in 2004 the authors write that ‘formal comparisons of different models of provision for VCT have not been undertaken, such as advice and testing at rural health centre level versus provision at a more anonymous site supported by information materials to enable access.’ Whilst the paper was about rural India there is no indication this lack they were referring only applied to that country. (Pallikadavath, Garda, Apte, Freedman, & Stones, 2005)

Additional issues that need to be understood when considering VCT were described in an Indian paper which was concerned that VCT centres have been recently established primarily in urban settings. Recognition of the cultural and social barriers is required to design effective HIV services. This paper says that a few studies have investigated HIV/AIDS knowledge and attitudes of pregnant women toward VCT in large urban cities in India but that very little information exists on this topic in rural populations, where the infection is spreading.(Rogers et al., 2006)

Recommendation:

2.2 Attitude of HIV testing and counselling provider

The attitude of a HIV testing and counselling provider is influenced by: the sociocultural meanings of health care, counselling and patient’s rights; the level of knowledge that the health care worker has about HIV; and the general capacity of public health systems.

Two sources comment on the doctor patient relationship in Thailand. Both refer to the hierarchical culture of Thai health service delivery which dictates that the patient must follow the doctor’s orders without questioning. This conflicts with the type of communication and the quality of the relationship required when dealing with HIV in health settings. (Cameron, 2006)

Empower Foundation comments upon the situation in Thailand where ‘the large majority of Thai people accord doctors and health care providers a great deal of respect for their hierarchical position in society. This respect and deference is not awarded on the individual merit, skills or knowledge of the doctor. Most people visiting a doctor in Thailand feel intimidated. They do not dare to ask questions let alone question the doctor’s treatment or advice. At the most, if they are very unsatisfied or unhappy they will simply change doctors rather than express any dissatisfaction or concerns. Many doctors become alarmed and offended if their patients do question a treatment or diagnosis. Patients who don’t comply or behave are scolded and/or insulted. The relationship is one where the patient follows the orders of the doctor without question or complaint. Very few people would ever refuse or decline a HIV test if suggested by a doctor. While this is good news for those wanting to collect statistics as we witnessed a decade ago, the consequences for the people involved are frightening.’ (Empower). This description and analysis of the role of a doctor could also be a reflection of the situation in many other countries of the region.

A study on the experience of Vietnamese IDU PLWHA found that, whilst there was mostly positive interaction with individual health care workers (HCWs), interactions with the health care system are negative. (Maher, 2007)

There is evidence that many HCWs do not have an adequate understanding of HIV and this affects how they treat people assumed, or known, to be infected. Vietnamese HCW fear HIV transmission through occupational exposure and casual contact. This may be due to a lack of adequate knowledge or an inability to protect themselves. Concern about the risk of transmission through casual contact can lead to the adoption of excessive measures and negative attitudes. (Maher, 2007)

In provincial China, in an area with the highest HIV prevalence, the HIV knowledge of HCWs was good overall. But they also had misconceptions with 24% believing HIV can be transmitted by kissing and 24% by mosquitoes. Knowledge of mother to child transmission was weak with only 57% aware of transmission in breast milk and only 22% aware that drugs can reduce MTCT.

The study demonstrates the link between ignorance of HIV and attitudes of stigma and discrimination. Published this year [2007] it shows considerable intolerance towards PLWHA with 23% of HCWs believing HIV/AIDS is a condition ‘of low class and illegal people’, 60% would keep their distance from a PLWHA, 29% believe that
PLWHA should not be allowed to marry and 43% believe they should not be allowed to have children. In comparison 22% of these HCWs believed that people with other inheritable disorders should not be allowed to have children. This is of particular concern as these HCWs worked in maternal and child health in high HIV prevalence areas.

Vietnamese IDUs with HIV felt that HCW’s attitudes differed according to their exposure to, and experience of, PLWHA. HCWs specialising in HIV medicine or counselling PLWHA showed more compassion and empathy and provided better service. (Maher, 2007) In China the most tolerant attitudes towards PLWHA came from younger HCWs. (Hesketh, Duo, Li, & Tomkins, 2005)

The condition of public health systems affects the capacity, attitudes and behaviours of the HCW. ‘The public health system in Vietnam is under-resourced and universal precautions may be seen as an unaffordable luxury. Health care workers would benefit from ongoing access to basic training incorporating information on HIV, patient confidentiality, infection control and stigma and discrimination. In Thailand the involvement of PLHWA as ‘co-providers’ of care has been responsible for de-stigmatisation and positive change in the attitude of HCWs towards the role of PWHA in treatment, care and support.’

‘Building the capacity of the health workforce is an essential part of enhancing health service provision for PLWHA. While seeking to shape the attitudes of HCWs and PLWHA to challenge stigma and discrimination offers less tangible results than funding a state-of-the-art clinic, it represents an investment in sustainable development and a broader, contextually informed framework for scaling up efforts.’ (Maher, 2007)

Consequently it appears that attention to improving the attitudes and practices of HCWs requires: ongoing training and education about HIV and their work practices; specific training in creating suitable relationships with clients; and improving the capacity of the public health system to create better quality performance and practice.

Capacity development of the public health system can follow innovative practices that both increase capacity and support local development strategies. These can include the involvement of PLWHA which has been demonstrated to improve the performance of health care workers and services. This would also have additional consequences of addressing and mitigating the factors associated with HIV stigma and discrimination.

Recommendations:

• Health care workers need to be educated about the transmission, prevention and treatment of HIV, including misconceptions, so that they can provide good quality services including testing and counselling.
• Local sociocultural beliefs about health care workers and their relationships with their clients need to be addressed to create a more suitable setting for dealing with HIV.
• The public health system needs to be supported to: encourage good quality health care worker and client relationships; ongoing education and training about HIV; and improve the quality of performance and practice.
• PLWHA should be involved in innovative HIV care models.

2.3 The financial costs of testing

When people needed to pay for testing it was consistently cited as a barrier to accessing testing.

Only since 2004 has the Chinese government provided free HIV testing to people who cannot afford such a service. In a country where some people earn less than 1,000 yuan per month Beijing residents had to pay 50 yuan (U.S$6.50) for an HIV screening test and 250 yuan (U.S. $25) for a confirmatory test. In a Chinese study of MSM, conducted before 2004, 22% cited cost as a reason for not seeking HIV testing.(Choi, Lui, Guo, Han, & Mandel, 2006) Cost was identified as one of the two major factors (plus greater knowledge about HIV/AIDS) influencing acceptance of testing amongst Chinese premarital couples.(Wu, Rou, Xu, Lou, & Detels, 2005)

Caregivers of children with HIV in India have difficulties getting a confirmed HIV diagnosis and referral to treatment centres. Sixty per cent of them are extremely poor, earning about R3000 a month, and had financial problems with getting tests done and accessing drugs. They are charged R3000 for a test and initial medicines cost R1000. Subsequent essential tests and medicines cost R5000. Elsewhere in rural India, where R100 - 150 is the average daily wage, multiple HIV tests were often taken at R400 each. (Pallikadavath, Garda, Apte, Freedman, & Stones, 2005) For Vietnamese sex workers the test’s cost and inconvenience were cited by 30% as impediments to testing. (Tran, Detels, Long, Phung, & Lan, 2005)

Thus if people are required to pay for their testing then a significant percentage will find the cost a barrier to testing. These people will be amongst the poorest in the community and this is another factor that marginalises them in their capacity to cope with the impact of the HIV epidemic.

Recommendation:

• Financial cost should not be a barrier to accessing VCT and subsequent medical and treatment needs.

2.4 Reporting of names and addresses

In countries where the law requires reporting of the name and address of HIV positive individuals to the government it can be a deterrent to testing due to concern about breach of confidentiality.

In a Chinese study 41% of participants cited concern that people might learn about their HIV status as a reason for not seeking HIV testing.(Choi, Lui, Guo, Han, & Mandel, 2006)

2.5 Failure to promote Government testing policies

In countries that have government policies of encouraging testing it is apparent that strategies are needed to promote the reason for the policy and the benefits of considering it.

China’s new national policy to provide free HIV testing will have little impact on changing the current course of the country’s HIV epidemic unless people are educated about the benefits of HIV testing and counselling, and are encouraged to seek these services. Promotion of HIV testing offers a window of opportunity to maintain the relatively low HIV prevalence that China’s MSM communities are experiencing now and avoid the devastation that the AIDS epidemic has brought to many MSM communities in Western countries. (Choi, Lui, Guo, Han, & Mandel, 2006)
Since 2000 The Vietnamese Government has had a policy of testing all pregnant women but testing rates remain less than 30%. Only 29.7% of HIV-infected mothers and 15% of their infants received ARV in seven provinces studied. (Dinh, Detels, & Nguyen, 2005)

2.6 Level of basic knowledge of HIV affects knowledge about and interest in testing.

Low levels of basic knowledge about HIV could also be contributing to low rates of VCT since many people did not know about and/or perceive the need for being tested

There are many areas in the region where a person’s HIV and AIDS knowledge is poor. Frequently this includes people who are at risk of infection. Not only does this mean that people do not understand how to prevent transmission but also they are unable to assess their level of risk and hence decide about the need to know their HIV status. If women do not know about mother to child transmission and that it can be minimised they will not seek testing when pregnant. If people do not know they live in a high risk area they will not be concerned about the need for testing. If people do not know about ARVs then they will fear testing and associate a positive result with death. If there are poor levels of knowledge about HIV transmission in populations then it can be presumed that there is also a poor level of knowledge of associated matters such as the role and benefits of HIV testing.

In China knowledge about HIV was very low. A 2004 study found that two out of five could not name a single way to protect the

mselves from HIV infection.(Khoshnood et al., 2006) Addressing this knowledge gap will be important to help curb the rise in HIV prevalence amongst pregnant woman and the corresponding risk of MTCT in China.

Correct knowledge about HIV and AIDS can co-exist with incorrect knowledge. Whilst 94% of pregnant women in an Indian study had heard of HIV/AIDS, and 60% had relatively good knowledge regarding transmission risk factors, 79% also believed that HIV can be acquired from blood donations and 14% reported that mosquitoes could spread HIV. Notably, 47% of women did not know that mother to child transmission can be prevented which influenced their attitudes towards the benefits of testing. (Rogers et al., 2006)

Education campaigns need to take account of the way that people learn. Illiteracy affects ability to comprehend HIV information. It is a particular problem in some high prevalence rural areas and in some generalised epidemic settings such as Papua New Guinea.

Having knowledge about HIV increases people’s willingness to be tested(Khoshnood et al., 2006) Variations in levels of knowledge are affected by educational and socio-economic status, for example through being able to learn from television in India.(Pallikadavath, Garda, Apte, Freedman, & Stones, 2005) Recent data from two Indian states where the urban HIV prevalence is relatively high indicate that women from socially and economically deprived groups had lower odds both of having HIV/AIDS awareness and knowing how to prevent getting infected.(Rogers et al., 2006)

Another study of pregnant women in a high HIV prevalence area in China found that higher education level was the only predictor of HIV knowledge. However in an area with the lowest education levels, but where intensive HIV education campaigns have occurred, the HIV knowledge scores were the highest across all areas. (In the same study more tolerant attitudes to PLWHA were consistently associated with better education and living in the areas where the HIV education campaigns occurred.) (Hesketh, Duo, Li, & Tomkins, 2005) Similarly, people with a higher level of education had both a higher level of HIV/AIDS knowledge and lower levels of public stigma and felt stigma. {Liu, 2006 #8} People of lower education backgrounds are disadvantaged in knowing about HIV and this is another factor that increases their vulnerability to the epidemic.

In Fuyang, China, where the HIV epidemic among blood donors was identified, and where there is relatively high HIV prevalence, less than 15% of engaged couples knew the transmission routes for HIV. A study giving couples HIV counselling and the option of testing had very low acceptance rates considering the local prevalence. In addition to lack of HIV knowledge the reason for these low rates was that the area’s high infection rates had not been publicised so the general public were unaware of the threat of HIV and didn’t have a clear understanding of what the disease is.(Wu, Rou, Xu, Lou, & Detels, 2005) Recently there has been an increase in HIV awareness throughout China because of the more open approach of the authorities and of coverage in the media. (Hesketh, Duo, Li, & Tomkins, 2005)

Since 2000 the Vietnamese Government has had a policy of testing all pregnant women but testing rates remain less than 30%. Only 29.7% of HIV-infected mothers and 15% of their infants received ARV in seven provinces studied. Only 53% of Vietnamese pregnant women accepted testing as they did not perceive themselves at risk, many were actually at high-risk. The majority (60%) were not knowledgeable about mother to child transmission or prevention options. (Additional reasons for not testing were: husband’s disapproval, unemployment status, perception of lack of health care when ill, and fear of stigmatisation.

In a study of Vietnamese pregnant women who were tested after counselling only 55% returned for their results. Having lower education levels was strongly associated with failing to return. Thus there is a need to provide information in clear simple terms that a woman with a low level of education can comprehend.(Dinh, Detels, & Nguyen, 2005)

Not only does lack of knowledge about HIV and being unable to assess personal risk factors influence testing practices, it can also increase the risk of getting infected. A study of Vietnamese female sex workers found that very poor knowledge of HIV was amongst the factors associated with being HIV positive.(Tran, Detels, Long, Phung, & Lan, 2005)

In Papua New Guinea, where there is a generalised HIV epidemic, counsellors say that many urban people still do not know about ARVs and thus it is common to believe that if you are diagnosed with HIV then you will die. (It is necessary to clarify between knowing that ARVs exist and knowing whether or not they are available). This shows that comprehensive education programs have failed to reach these people.

Education about HIV also increases willingness to be tested. Good community HIV education campaigns are effective in informing the population. In the absence of these people with low general education levels and from lower socio-economic context are less likely to understand HIV and thus be aware of or willing to be tested.

People need to be provided with basic comprehensive HIV education that places their risk in context. This must address all aspects of transmission and treatment options, including myths and misconceptions about HIV.

Recommendations:

• Comprehensive HIV education must be provided to all addressing transmission and treatment, including myths and misconceptions, and place HIV risk in local context.

2.7 Availability and access of testing and counselling centres

HIV testing and counselling facilities need to be appropriately located, easily accessible and designed to be user-friendly.

In Fuyang, China, where HIV prevalence was high HIV testing was not readily available at either the township or the county hospital. There was only one laboratory certified for conducting HIV screening tests in each county. HIV positive specimens at the county level had to be sent to the provincial or national laboratory for Western blot confirmation. (Wu, Rou, Xu, Lou, & Detels, 2005)

For Chinese MSM structural barriers to testing and counselling included long travel time to testing sites. (Choi, Lui, Guo, Han, & Mandel, 2006). In some settingsthe need to register as a legal resident and hence be able to access (free) health services in Beijing requires the possession of a legal permit to live in the city so not having a permit might be a barrier to getting tested. (Choi, Lui, Guo, Han, & Mandel, 2006)access (free) public

In another country NGO Social workers and counsellors providing testing and counselling services in one high prevalence city said that people preferred NGO services to government clinics because they are better located, more private, are free and that overall they feel more comfortable using them.

Recommendation:

• HIV testing and counselling facilities need to be appropriately located, easily accessible and designed to be user-friendly.

2.8 Care after testing

A common comment across the region is that local level HIV care and support services are poorly developed and often not available on the scale required. This influences people’s attitudes to HIV testing. People will go for testing if they can see that, if they are diagnosed with HIV, then they receive care and support. These services need to be affordable. HIV care and support services should take a comprehensive approach to health promotion and prevention and be designed according to client’s needs. If good quality care and support services are unavailable people will be reluctant to be tested.

Empower Foundation comment that ‘When people test HIV positive in Thailand it does not

in any way guarantee access to health care, especially ARV’s. They will be tested and treated for opportunistic infections that threaten the well-being of society e.g. TB. Other diseases such as fungal skin infections, CMV, weight loss, and diarrhoea are not treatment priorities. Only people with a CD 4 count of less than 200 are able to apply for ARV’s and even then it’s not automatic that they will get them.’

‘In Thailand access to free ARV’s is extremely limited. Generic ARV’s cost a third of the minimum wage and, despite promises, are still not available under the Universal National Health Care Scheme. Only first generation generic drugs are produced. Many hospitals do not have a budget large enough to cover the costs of running ARV programs. Few doctors are trained in the administration and management of ARV’s. The management requires that the patient becomes at least a partner in their own health care which is not compatible with current doctor – patient relationships.’

‘On the ground HIV testing does not equate with treatment. Often the only change after a positive HIV result is the person’s level of stress increases further damaging their immune systems.’ (Empower)

In Vietnam since the shift from universal health care to Doi Moi, or Open Door policy, the costs have shifted to users. Whilst, in theory, free basic health care is provided, there is limited access to medicines. Although PLWHA can get free health care the process for achieving this is cumbersome and deters most. This is compounded by fears for confidentiality. Thus most PLWHA do not register. The complexity of this is accentuated for IDU PLWHA who also lack access to drug related treatment options.

The poverty and marginalisation experienced by many PLWHA in Vietnam also presents significant challenges to improving access to HIV testing, treatment and support. The costs of health care and drug dependence for IDUs creates a real barrier to accessing health care. This includes difficulties accessing treatments for Opportunistic Infections. Most believe that ARVs are not accessible, but access to OI treatments would improve quality, and possibly length, of life. It was especially difficult for homeless PLWHA to negotiate this health bureaucracy. Witnessing the fate of others only added to the sense of hopelessness experienced by such a group of marginalised IDU PLWHA (Maher, 2007)

If people cannot see that they will be provided with treatment and medical care, and, in many circumstances, access to ARV, then they will be very reluctant to be tested out of fear of the negative consequences of a diagnosis of HIV.

Recommendation:

2.9 Stigma and discrimination

The stigma associated with HIV is a barrier to testing (and to treatment). Although studies show that there has been some improvement from earlier high degrees of stigma it still remains a barrier to testing.(Hesketh, Duo, Li, & Tomkins, 2005)

The incidence and impact of HIV related stigma and discrimination across the region is well known.

In Papua New Guinea ‘many accounts have appeared of the stigmatisation of those known or thought to be suffering from AIDS including their strangling, torture, burning, drowning, and their being dumped into rivers, latrines and chicken and pig enclosures. The Post-Courier and The National, PNG’s two English-daily newspapers have reported the piling up of the bodies of AIDS victims in under-resourced morgues and their burial in unmarked graves. The airing in August 2006 of the ABC documentary, “Sick No Good”, was followed by public condemnation of the callous treatment it uncovered – and equally of its airing to foreigners.’(Hammer, 2007)

In South Korea nearly 30% of AIDS patients commit suicide and this number has been increasing for each of the past five years. It is attributed to public prejudice against AIDS that has lead to discrimination, isolation and alienation.(AIDS-ASIA)

A four-country study that included Vietnam found that physical isolation of PLWHA is common and ranges from isolation within the home and community through to workplaces, schools and hospitals. In the home stigma is expressed through the segregation of typically shared objects like eating utensils, clothes and bed linens and by making PLWHA sleep and eat in isolation – highly unusual activities in these countries where space is limited and eating together is the norm. (HIV/AIDS Stigma: Finding Solutions to Strengthen HIV/AIDS Programs, 2006)

The stigma already associated with marginalised groups such as MSM, sex workers or IDUs is compounded by the stigma associated with HIV. This operates at a number of levels and has multiple consequences. For example the social and cultural meanings of homosexuality in China play an important role in how MSM respond to HIV. Homophobia makes them hard to reach for HIV education and hence they remain ignorant about, or do not take, HIV seriously. These pressures also increase their chances of having unsafe sex with multiple partners, as they are reluctant to get to know their partners for fear of having their identity exposed. HIV has reinforced this internalised homophobia. The joint effect of homophobia and HIV phobia makes this group constrained and unable to respond to the epidemic. MSM with HIV are unable to disclose their status, which increases chances of spreading infection. If the cultural taboo about homosexuality were addressed then it would be easier for MSM to deal with HIV more openly. This will require effort at individual, family, community and societal levels but can be part of a more responsive and sensitive HIV programmes and interventions. (Zhou, 2006)

Stigma and discrimination about HIV directly impact on people’s willingness to be tested for HIV. In a Vietnamese study of pregnant women the fear of stigmatisation not only caused many to decline testing but also, if tested, they may not return for results, precluding appropriate treatments or interventions if infected. (Dinh, Detels, & Nguyen, 2005) The problem of not returning for test results occurred a number of times and, in all instances, fear of stigma and discrimination was attributed as one of the most likely explanations.

The United States Centers for Disease Control recognises that one of the major barriers to broad adoption of HIV prevention strategies is the stigma associated with HIV, which could lead people to refute risk, refuse testing, delay treatment, not disclose HIV status, and not seek public assistance.(CDC, 2003) A study of HIV-related stigma amongst market workers in China found high levels of stigma towards PLWHA. Half believed that punishment was an appropriate response to PLWHA. Over half were unwilling to be friends with PLWHA and 73% thought PLWHA should be isolated. Those who felt less stigma towards PLWHA were more willing to be tested themselves. The relationship between willingness to be tested for HIV and HIV stigma suggests that increasing testing willingness may reduce HIV stigma. Increasing tolerance of PLWHA may result in higher acceptability of HIV testing among the general population…. Reducing HIV-related stigma will help in implementing effective intervention programs and reducing risk behaviours that support the spread of the epidemic.(Lee et al., 2005)

A study of HIV-related knowledge and attitudes among pregnant women and health care workers in Yunnan reported that the more educated women had better knowledge of HIV; however, attitudes towards people with HIV/AIDS were overwhelmingly negative. (Hesketh, Duo, Li, & Tomkins, 2005) Similarly, few participants knew at bottom-l

ine that HIV could not be transmitted through casual contact. This suggests that the participants had considerable fear of interacting with HIV positive people. However, participants’ misconceptions about HIV transmission through casual contact decreased significantly at follow-up. This indicates that the VCT intervention may have had a positive effect on reducing fear of, and resulting stigma associated with, persons living with HIV.

These studies propose a dynamic link between the stigma of HIV and attitudes towards testing for HIV. By reducing the levels of stigma around HIV people will be more likely to go for HIV testing. Simultaneously, strategies that make testing more attractive will also reduce HIV stigma and discrimination. The two are interdependent and attention to one will enhance the other.

Attention to supporting the role of PLWHA can also address stigma and in turn have beneficial impacts on HIV programmes including testing. PLWHA in Vietnam, particularly current or former IDUs, experience considerable stigma and discrimination and there is little sense of partnership between affected communities and the health care system. A genuine commitment by governments to fostering the development of peer-based organisations is required to provide mechanisms for advocacy by, and greater involvement of, affected communities in responding to the epidemic.(Maher, 2007)

There are a range of interventions that can benefit both PLWHA and the health care system. PLWHA can be involved in projects aimed at facilitating uptake of testing, reducing stigma related obstacles to scaling up treatment, and extending the reach of prevention and harm reduction activities. This has been done in a range of countries across the world including within the Asian region. This is known of anecdotally but it does not appear to have been documented and promoted.

Protecting the rights of HIV-positive people may enable members of society to examine their own vulnerability to HIV, and this may effectively increase the number of people who come forward voluntarily to be tested, thus improving the public health outcomes for PLWHA and for those who are now uninfected. Governments should invoke legal sanctions against people or organisations that breach the confidentiality of PLWHA. PLWHA need education about their rights and available redress if rights are violated. They also need encouragement and support to become involved in public education, in HIV counselling, and in raising the awareness of policy makers(Paxton et al., 2005)

This has generally been neglected or significantly under-resourced. Whilst there is global acknowledgement of the role that PLWHA should play in an effective response to HIV, in practice there are concerns that it has been grossly neglected. Whilst there has been important developments in PLWHA self- determination and organisations there are those who argue that, comparatively, this has been too little too late. A comparison of the attention given to supporting the role of PLWHA and of addressing stigma and discrimination is believed will show that it has received an extremely small amount of attention from all areas of program support – funding, programming, capacity building etc. Similarly analysis of the attention given to engaging with stigma and discrimination could show that it has been another highly neglected area of the response in comparison to the attention and resources given to topics such as prevention.

An effective sustainable broad-based response to HIV requires strategies that address the social and structural dimensions of HIV. This requires the creation of an enabling environment, one within which people are able to access testing and counselling, and treatment.

Recommendations:

• The dynamic interdependent link between the stigma of HIV and attitudes towards testing for HIV needs to be acknowledged so that simultaneously strategies are required for reducing stigma and making testing more attractive.
• Strategies to reduce HIV related stigma must address its social and structural dimensions.
• The active involvement of PLWHA must be supported across all levels of the response to HIV and this must be accorded equity of resources, capacity development and strategies to ensure their ability to operate as true partners in the response to HIV.

2.10 Women and HIV Testing and Counseling

Again in the region, there is a scarcity of studies about women and HIV testing, the majority of the information available concerns pregnant women.

A Vietnamese study of pregnant women looked at the factors associated with declining HIV testing and failing to return for results. Most of these women did not perceive themselves as being at risk. Consequently many high-risk women do not get tested. The same reason for not being tested was found in rural Indian pregnant women. (Rogers et al., 2006)Hence it is important to help women recognize their own risk.

Additional reasons behind declining testing were: not being knowledgeable about mother-to-child transmission or prevention options; concern about husband’s disapproval; and unemployment status and the perception of a lack of healthcare support in case of illness. In the latter case those women were more dependent on their husbands, causing them to fear losing emotional and financial support if they are identified as HIV infected.

Few studies have investigated HIV knowledge and attitudes of pregnant women toward VCT in rural populations in India where the infection is spreading. One study assessed HIV knowledge, attitudes, and perceived benefits and risks of HIV testing among pregnant women in rural India. Whilst most had high knowledge of HIV, 70% also had misconceptions about transmission and 48% did not know that MTCT can be prevented. (Rogers et al., 2006)

The majority of pregnant women were willing to be tested and would seek medical intervention to prevent MTCT of HIV if found to have HIV, but most were concerned about confidentiality and disclosing status because of fear of negative reactions from their husbands (e.g., abandonment, blame, domestic violence, and divorce). They also had concerns about stigma and discrimination from parents and community against PLWHA. These findings are consistent with reports from other settings.(Rogers et al., 2006)

Thus there are cultural and social barriers that also affect women’s choices regarding testing. The disadvantages caused by gender was identified in a study of PLWHA in rural India which referred to the 1998-99 National Family Health Survey of Maharashtra state where only 29% of women made decisions on obtaining health care, whilst in 46% of cases this decision was made by their husbands. Obviously this has implications for access to testing. In this study of both male and female PLWHA the majority had been tested when a doctor was consulted for opportunistic infections, and was mostly done without adequate counselling. (Pallikadavath, Garda, Apte, Freedman, & Stones, 2005) In a southern Indian study of pregnant women’s willingness to be tested only 21% would make this decision independently whilst 46% said their husband would have to decide. (H Brown, 2001) Educating about HIV and involving the husband in discussions and decisions regarding testing seems to be necessary to assist an increase in testing among women.

The fear of stigma and discrimination within marriage and on a wider social perspective causes women to be reluctant to be tested. Strategies to address stigma and discrimination are needed for both women’s partners and on family, community and social levels. Women need to be supported and protected during and after testing.

The level of HIV education is a distinct factor affecting women and testing. The most important finding of a study of pregnant Chinese women is that HIV-related knowledge was positively associated with willingness to get tested. It suggests that antenatal clinic-based pro

grams that strengthen HIV-related knowledge in this low risk group may have a positive effect on willingness to get tested, and thus subsequently improve early detection and intervention for HIV positive pregnant women.(Khoshnood et al., 2006) Frequently women do not either know about mother-to-child transmission or about options to prevent it. Pregnant women need to be educated about the risks to their expected child.

The effects of fear of stigma and discrimination were attributed to causing low rates of return for results in the study of Vietnamese pregnant women that offered testing as part of participation in the study. Only 55.3% returned for their results. Having a low education level was also strongly associated with failing to return for results. This suggests the need for providing information in clear simple terms that women with a low education level can understand.

In the area of China with the highest HIV prevalence women and health professionals overwhelmingly support compulsory testing in preference to voluntary and for it to occur at the premarital examination stage (a common procedure in China). It is believed this attitude ‘needs to be seen in the context of a society where choice is limited in many aspects of life and particularly in the area of reproduction.’ (Hesketh, Duo, Li, & Tomkins, 2005)

Another study addressed approaches to testing. After individual pretest counselling wherein women actively chose whether to be tested 57% of women opted for antenatal HIV testing. The study recommends routine HIV screening with same-day rapid HIV testing be provided routinely as part of the comprehensive pregnancy care package in India, while making it clear that a woman has the right to refuse HIV testing (i.e., the “opt-out” approach) and refer to a 2004 report on routine testing in prenatal care in Botswana. However they do not specify their reasoning.(H Brown, 2001)

The above information suggests strongly that strategies to support testing amongst women need to consider the contexts of these women’s lives on a number of levels. Their basic understanding and knowledge of HIV is often inadequate, and this includes misconceptions and insufficient awareness of mother to child transmission. This indicates that they have not been the focus of competent HIV education programmes. Their ability to access testing is associated with their educational background, but in particular with issues of gender and of women’s ability to access and make choices about health care. In turn the stigma of HIV has specific implications for women. They particularly fear the reactions to a HIV diagnosis of their husbands, families and communities and these fears are of profound consequences upon their lives and safety.

Recommendation:
• Strategies addressing women and HIV testing and counselling need to consider the contexts of these women’s lives and ensure they are provided with comprehensive HIV education and services, freely have access to services, and are protected from stigma and discrimination whilst being tested and diagnosed.

3. Specific Most At Risk Populations

3.1 Female Commercial Sex Workers

Across Asia there are only a small number of studies on sex workers and HIV testing. These raise questions about the quality of testing services, concerns that testing and counselling guidelines are not followed, indicate that these women’s vulnerability to HIV is not being framed according to analysis of their personal and workplace risk factors, and identify the role that the stigma of sex work plays in these women’s use of HIV services.

Almost all women sex workers in Thailand know that HIV is sexually transmitted and that condoms offer protection. Many have regular HIV tests with the sole aim of reassuring themselves they are HIV negative. Budget cuts in past years caused closure of public STI clinics, the elimination of free condom distribution, decrease in HIV prevention programs, and health worker shortages. Coinciding with this has been a budget shift away from supporting HIV prevention education to that of access to treatment. Until 2001 women sex workers were tested regularly at government clinics that followed effective guidelines and practices. Many of these no longer operate. Much testing is done in private clinics and hospitals that may offer no counselling at all. Many non-Thai customers take women for a rapid HIV test before they have sex. This does not allow for the window period, nor do the customers themselves get tested at such times.(Cameron, 2006)

In Vietnam the stigmatisation and outlaw status of sex workers has created enormous challenges and obstacles to identifying, approaching and delivering interventions to them as a HIV high-risk group. This is compounded in Vietnam by prostitution being illegal and (along with drug use) considered a ‘social evil’. There have been few studies among female sex workers even though the HIV infection rates in Ho Chi Minh City increased from 3.1% in 1998 to 24.3% in 2002 and in Hanoi from 2.5% in 1998 to 14.5% in 2002. Furthermore, most of these studies have been amongst those in rehabilitation centres who might not be representative of the general female sex worker population. (Tran, Detels, Long, Phung, & Lan, 2005)

A 2002 large-scale study of female sex workers in Hanoi found that 34% had previously had a HIV test but only 15% had been voluntarily tested. Of those who had been tested 80% knew their test results but only 14 and 11% had had pre- and post-test counselling respectively. That study tested the participants and 12% were HIV positive, of them only 32% knew their status previously. Of the HIV positive workers 45% had lent their used injecting equipment to others in the past 6 months. They also had more clients than the non-infected workers. Of all the participants 38% used drugs, 83% of these injected and 64% of them had shared equipment (representing 20% of all the sex workers).

The reasons the participants gave for not being tested were: for 36% stigmatisation-related reasons; 30% because of cost and inconvenience; and 34% thought that they were risk free and did not need testing. Overall, 36% categorised themselves as having no risk of HIV infection, yet of them, 24% and 51% used condoms inconsistently with irregular and regular clients, respectively. This shows that these women do not understand enough about HIV and the modes and circumstances influencing transmission.

This shows the need for comprehensive understanding of the behaviours of risk populations since the sharing of injecting equipment was the primary cause of the rapid increase in HIV infection among female sex workers in Hanoi. Furthermore, interventions need to recognise that being both sex workers and injecting drug users these women face even greater stigmatisation. This isolates them from the rest of society and even from their sex-worker peers.

The study says that interventions for these IDU sex workers need to recognise that their low social status, feelings of inferiority, and stigmatisation often makes them less concerned about potential infection risks and harder to reach with HIV prevention messages. The HIV prevalence amongst sex workers who had been in rehabilitation centres was 17%, which was 6% higher than among those who had never been in rehabilitation. This suggests that these programs could consider improving their HIV education strategies.

The study states that ‘the lack of an effective voluntary counselling and testing system is one of the factors contributing to the spread of HIV’ (because knowledge of one’s HIV status causes a decrease in transmitting behaviours), and that ‘stigmatisation and lack of treatment are important factors that discourage people from seeking voluntary counselling and testing and must be addressed.’ (Tran, Detels, Long, Phung, & Lan, 2005)

None of the studies appear to c

onsider the consequences of HIV testing upon a sex worker’s ability to continue working and thus earn a livelihood.

Overall it is of concern that, whilst sex workers have been prominently identified as a major HIV risk population, there has been significant neglect of means to understand the factors that influence their use of testing and counselling services. The limitations, both in number and scope, of the research conducted raises the question of whether it is a reflection of the lack of attention given overall to this population within the Asian and Pacific region.

Since there has been a lack of attention to trying to understand how best to provide VCT to sex workers, and given the evidence that existing HIV testing suffers in quality and does not follow guidelines, it cannot be said that VCT has failed to get sex workers to be tested. It is more likely that the problem has been the failure to properly provide the service.

Recommendation:

• Strategies for providing HIV education to sex workers need to be based in an analysis of their personal and workplace risk factors.
• Research needs to be conducted to provide greater understanding of specific most at risk populations’ attitudes to, and uses of, HIV testing and counselling.
• HIV testing and counselling services used by sex workers should follow the guidelines established to provide suitable information and counselling before and after testing, respect confidentiality and informed consent, provide access to the means to prevent transmission, and to care and support services.
• Strategies to address HIV testing and counselling amongst sex workers need to allow for the stigma associated with sex work and other personal behaviours such as drug use.

3.2 Men who have sex with men

There are only a small number of studies addressing MSM and HIV testing which, in turn, is part of a comparatively small amount of research that has been conducted on MSM in the region. This suggests a general lack of attention to this high risk population.

An Indian study published in 2004 states that previously there had been no published study on the needs of HIV positive MSM in that country. The participants were ‘feminine’ identified MSM and the difficulties this population have in accessing the public health system are clearly identified. If they have anal STIs they fear using medical services, as they would be exposed as homosexual. Some doctors are unable to respond appropriately when MSM do describe STI symptoms and prescribe medication without physical examinations or fail to take a sexual history. The negative attitude of government staff and the bureaucratic long procedures in government hospitals prevent them from using the services unless they are ill. Some MSM use NGO medical services but do not reveal their same sex behaviour and so do not receive appropriate HIV prevention education and counselling.(Chakrapani, 2004)

Another example of the stigma of HIV hindering HIV prevention amongst MSM occurs in Indonesia where many MSM know they are in a high-risk group but don't want to get tested for fear of the double stigma of being homosexual and having HIV. Many MSM in Jakarta are married and are at an increased risk of transmitting the virus to their wives. Among 25 participants in the study, 14 agreed to receive an HIV test, four tested positive. (Gunawan, 2007)

In China testing had not been promoted amongst MSM. There was limited understanding of their testing behaviours with only three studies considering the testing behaviour of Chinese MSM and showing extremely low testing rates. None of these studies provided information about the characteristics of MSM who seek HIV testing and the associated barriers to testing. (Choi, Lui, Guo, Han, & Mandel, 2006) Finally in 2006 a Chinese study was published that investigated the testing behaviour of MSM based on research conducted in 2001-02.(Choi, Lui, Guo, Han, & Mandel, 2006) That only 18% had been tested previously was partly attributed to the then government policy of charging for tests and to the legal requirement to report names and addresses of those testing positive. Of the participants, 22% and 41% cited costs and concern that people might learn their HIV status as a reason for not being tested. Almost half reported not seeking testing due to belief that little could be done if they were positive. (Access to free ARV is limited to rural areas and low-income urban people).

The range of other reasons for not testing included: perceived low risk for infection; being afraid of needles; fear of learning HIV status, not wanting to think about HIV positive status; the worry that people might think they have HIV; the concern that people might find out about their homosexuality; lack of knowledge about testing; and long travel time to testing sites.

Greater acceptances of sexual identify and social contact with other MSM influences testing practices. MSM were more likely to have tested if they are less concerned about the stigma of homosexuality and HIV. Those men more involved with MSM networks probably had more information about testing and were more likely to have been tested.

Since the study showed it is possible to attract MSM for testing if anonymity is guaranteed then increased testing and knowledge of HIV infection may be achieved by establishing MSM-friendly anonymous test sites. The most frequently cited reason for participating was to receive a free test. However there is a specific problem of having people return for results. Only 38% of participants returned for results in this study.

The study authors propose a need for targeted approaches to increase access to testing and prevention education. They claim that China’s recent policy of providing free testing will have little impact on the course of the epidemic unless people are educated about the benefits of testing and counselling, and are encouraged to seek these services. (Choi, Lui, Guo, Han, & Mandel, 2006)

A 2006 paper on Chinese MSM PLWHA refers to the small number of studies of MSM in China and comments they are heavily influenced by the Western traditional biomedical model with its focus on risk perception, reasons for engagement in unsafe sex, and barriers in accessing HIV prevention services. (Zhou, 2006)They rarely considered Chinese constructions of homosexuality and their impacts on men’s responses to this epidemic. It also requires consideration of the context of family norms, desired gender roles, homophobia, HIV and AIDS related stigma, and other sociocultural factors in China.

These MSM were ignorant of, or knew little about, HIV. Consequently there was a lack of safe sex knowledge and of condom use. Most were not aware of their HIV infection until being tested, usually for blood testing or prior to surgery, some had unknowingly had opportunistic infections.

The stigma associated with homosexuality forced many men to hide their sexual preference to avoid embarrassing themselves and their families. Many of them get married. Recent studies have found that the fear of others learning about their homosexuality is one of the main barriers for Chinese MSM in accessing the HIV test, in spite of their awareness of their possible exposure to HIV.

The fear of HIV that permeates their MSM world has forced HIV positive MSM to become more isolated and marginalised due to lack of support from their peers. Fear of discrimination has inhibited them from disclosing their status. This exposes their peers to greater risk of infection. Building a supportive environment for all MSM will enable HIV positive members to receive more support, make it easier for all MSM to discuss HIV and improve their lack of knowledge of it and to take it more seriously. This would directly confront the social homophobia that has decreased the capacity of the group to respond to HIV, and also confront the HIV phobia within the group that pre

vents members from openly confronting the disease and offering support to affected members.(Zhou, 2006)

There are instances where the purpose and approach used by public health authorities is not properly communicated and causes misunderstandings. The following situation in China shows the concern and anxiety that can be created. The Centers for Disease Control [CDC] have increased their HIV Sentinel Surveillance, , which is anonymous and unlinked in it’s nature, and as part of this efforts have increased their contact with MSM groups and communities. However, these communities complain that they are being "used" and that what the CDC calls "cooperation" is only a strategy to find volunteers for testing. MSM communities complain that no satisfactory counselling or, in some cases, no counselling at all is provided before and after testing, and those testing HIV positive do not receive adequate care and counselling on treatment and medication. Pre testing counselling is neglected since there is a clear emphasis on numbers instead of on the quality of services. By not giving satisfactory pre testing counselling services, the "voluntary" aspect of the testing is also disregarded since individuals cannot make fully informed decisions on whether they want to take the test or not, it also affects ability to cope with the emotional and psychological challenges on testing HIV positive. In an ideal setting people would be informed about it being a sentinel surveillance process and be offered to additionally pursue VCT.

Another indication of the quality of some CDCs is the problem with discrimination. In some provinces volunteers have said that PLWHA are subject to open discrimination when visiting the CDC. (There have been incidents reported such as staff from the CDC refusing to touch a pen after it had been used by a PLWHA).

Finally, another common problem with the Chinese CDCs is that of the violation of the principle of confidentiality. In some provinces in order to get free HIV testing people must fulfil a number of conditions (being HIV positive, drug user, having multiple sex partners, or being homosexual). In order to prevent repeated unnecessary testings identification is also requested. This means that to get tested they must disclose their identity and their sexual orientation. This is seen as constituting a clear violation of the principle of confidentiality.

It appears that limited attention has been given to understanding HIV testing and MSM. There have not been specific education campaigns encouraging MSM to consider testing. This seems to be part of a larger problem of limited attention to MSM and HIV in general. The small amount of research on MSM and HIV and especially on their attitudes to, and behaviours around, testing is an indication of this neglect.

From the research that has been conducted it is apparent that in one way MSM are affected by the similar factors associated with testing as other populations; lack of knowledge about HIV; lack of knowledge about testing; cost; and fear of the consequences of having HIV. But these men are also affected by the double stigma of homosexuality and HIV.

The stigma around homosexuality has already caused them to be secretive about their identity and behaviour and this is demonstrated by their experience with the public health system. The stigma of HIV operates within their personal life and social worlds on many levels. It is not just the reason why they might be reluctant to be tested but also affects their sexual and preventative behaviour. Denial of risk of HIV for personal or social reasons is a factor causing HIV to spread amongst MSM and to their female partners.

HIV strategies and programs that take consideration of these fears about stigma and discrimination, and which are designed around the needs and sensitivities of these men, appear to be most successful. This is demonstrated by the success of the MSM-friendly anonymous testing study in China. It is also supported by the complaints regarding current practices of testing MSM which demonstrate that the testing is not been done for the benefit of the client and thus is not succeeding.

Consequently, testing strategies for MSM need to be framed within a perspective that takes account of the personal and social contexts affecting these men and be part of a continuum of health promotion and prevention strategies and services that are designed according to community development principles.

Recommendations:

• MSM should be educated about the benefits of testing and counselling and be encouraged to seek these services
• HIV testing and counselling strategies need to acknowledge the stigma associated with male to male sex and recognise that it is not easy for many men to disclose as MSM and hence attend health centres. Special strategies and services need to be provided to ensure safety, confidentiality and respect.
• Strategies that create a supportive environment for MSM will enhance their use of HIV testing and counselling and other health education and services.

3.3 Injecting Drug Users

There is a lack of information about IDUs and HIV testing across the region. A paper on IDUs and their HIV testing experience in Bali, Indonesia, comments ‘because the experience of testing may impact (drug user’s) later use of health services and health behaviours, research is needed on the experiences of HIV testing…To our knowledge, although there have been studies on the HIV risk behaviours of drug users, published studies of these testing issues are not available for countries in Southeast Asia.’ (Sawitri, Sumantera, Wirawan, Ford, & Lehman, 2006) A study currently in press, investigating HIV treatment, care and support for IDU in Vietnam, and which includes attention to testing, may be the only source of such information in the Asia Pacific region.(Maher, 2007)

This study identifies considerable barriers to scaling up services for IDUs. It shows that the context in which IDUs live, the psychosocial issues they must deal with, and the meanings given to drug use have strong influences on IDU’s attitudes toward, and use of, HIV services.

The Vietnamese government policies of sex work and injecting drug use being social evils and punitive practices such as mandatory detention coupled with the stigma and discrimination of injecting drug use cause many IDU to fear discovery and being abandoned by their families and communities, (which was not uncommon).

Lack of confidentiality, limited financial resources, and restricted access to essential medications provide powerful disincentives to using health services. The bureaucratic processes involved in accessing the free Vietnamese health system mean that few IDU with HIV register for it. At the time of the study there was no anonymous testing site providing free VCT. The testing practices at the time were very poor. IDUs knew that confidentiality was not respected, and results were often given without empathy, consideration, or pre and post test counselling. While they were given advice on preventing transmission, living a healthy life and the need to stop using drugs, they were not provided with practical information on stopping drug use or access to services, information or support. Access to methadone will not be commonly available for a long time. Current IDUs with HIV were experiencing problems accessing medications: the public health system has limited stock; PLWHA have concerns about confidentiality; and they commonly believe they will not access ARV. Care and support was characterised by the negative attitudes of health care workers, which, whilst partly due to HCWs fear of HIV due to lack of knowledge, was also a consequence of the way that the ‘social evil’ of IDU interacted with the stigma of HIV to influence the way that HCWs treated these people.

For all of the above reason IDUs are unlikely to see HIV testing as worthwhile. Thus strategies for i

mproving testing amongst IDU should attend to structural barriers such as stigma and discrimination around drug use, the poverty and circumstances of the IDUs and the capacity of the health system to provide for their needs. Otherwise if IDUs in such a country were to be tested positive to HIV there would be complex barriers to them being able to cope with the diagnosis, to be able to remain within their families and communities, and to access appropriate care, support and medication.

Recommendation:

Reference:
AIDS-ASIA. Retrieved Digest Number 724, 15/05/2007
Bali, Burnet Institute Indonesia report. Personal communication.
Brown, H., Vallabhaneni S, Solomon S, Mothi S, et al. (2001). Attitudes towards prenatal HIV testing and treatment among pregnant women in southern India. International Journal of STD & AIDS, 12(6), 390-394.
Burnet Institute Indonesia. Personal communication. (2007).
Cameron, L. (2006). Sexual Health and Rights. Sex Workers, Transgender People & Men Who have Sex with Men. Thailand: Open Society Institute.
CDC. (2003). HIV prevention strategic plan through 2005 [Electronic Version] fromhttp://www.cdc.gov/hiv/partners/psp.htm.
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Hesketh, T., Duo, L., Li, H., & Tomkins, A. M. (2005). Attitudes to HIV and HIV testing in high prevalence areas of China: informing the introduction of voluntary counselling and testing programmes. Sexually Transmitted Infections, 81(2), 108-112.
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Khoshnood, K., Wilson, K. S., Filardo, G., Liu, Z. D., Keung, N. H., & Wu, Z. Y. (2006). Assessing the efficacy of a voluntary HIV counseling and testing intervention for pregnant women and male partners in Urumqi City, China. AIDS & Behavior, 10(6), 671-681.
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Tran, T. N., Detels, R., Long, H. T., Phung, L. V., & Lan, H. P. (2005). HIV infection and risk characteristics among female sex workers in Hanoi, Vietnam. JAIDS Journal of Acquired Immune Deficiency Syndromes, 39(5), 581-586.
Wu, Z. Y., Rou, K. M., Xu, C., Lou, W., & Detels, R. (2005). Acceptability of HIV/AIDS counseling and testing among premarital couples in China. AIDS Education & Prevention, 17(1), 12-21.
Zhou, Y. R. (2006). Homosexuality, seropositivity, and family obligations: Perspectives of HIV-infected men who have sex with men in China. Culture, Health & Sexuality, 8(6), 487-500.

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