A situational analysis of HIV/AIDS-related discrimination in Hanoi, Vietnam

Authors: D.V. KHOAT(1), L.D HONG(1), C.Q. AN(2), D. NGU(2), D.D. REIDPATH(3)
/(1) Vietnamese Community Mobilization Centre for HIV/AIDS Control, Hanoi, (2) National AIDS Standing Bureau, Hanoi, Vietnam, and (3) Deakin University, Melbourne, Australia/

 Abstract

 The laws in Viemam provide a framework within which one may judge the nature and type of health care-related discrimination to which people living with HIV (PLWHA) are subject. Despite the existence of stringent legislation protecting the rights of PLWHA, this study found that, in practice, PLWHA experienced significant structural discrimination in their daily lives. The discrimination experienced by PLWHA was exacerbated by the fact that, historically, HIV is associated with high­ risk, marginalized groups such as drug users and sex workers. In the health care sector, discriminatory practices (for instance, refusal to treat), differential treatment and non-confidentiality were frequent. For the development of successful prevention and treatment strategies, a mutually desirable and equitable balance must be achieved between individual rights and needs and individual obligations to the broader society.

Introduction

Itwas estimated that at the end of 2001, Vietnam had approximately 130,000 PLWHA or a prevalence of around 0.3% in adults (UNAIDS/WHO, 2002). Historically, the risk of HIV infection has been observed mainly among injecting drug users (Hien et al., 2000; 2001; Tran et al., 1998; UNAIDS/WHO, 2002) and sex workers (Rekart, 2002; Thuy et al., 1998). Estimates place the prevalence of HIV among some populations of injecting drug users between 65 and 74% (Gorbach et al., 2002), and this remains the most significant source of HIV infection (Quan et al., 2000). There is also a significant potential risk for men who engage in unprotected same-sex intercourse (Colby, 2003; Colby et al., 2004).

Sentinel surveillance shows that the broader population has experienced a slow increase in HIV prevalence (Gorbach et al., 2002). One possible explanation for this may lie in the low occurrence of intercourse outside marriage (Bui et al., 2001; Mensch et al., 2003). In one study of sexual behaviour among young people, for instance, few participants (11%) reported being sexually active and, of those who did, most (80%) reported using condoms (Vinh et al., 2003).

Nonetheless, the danger of the infection migrating into the general community must remain a grave concern for policy makers because of the serious possible consequences. There are a number of mechanisms that have been discussed and trialled to prevent the spread of HIV infection including (peer) education, needle exchange programmes and changes in sexual practice (Khoat et al., 2003; Quan ct al., 1998; 2000; Walters, 2003). The provision of treatment, care and support for PLWHA, which is important for improving their quality and length of life, is another important strategy for preventing the spread of HIV (Agglcton, 2002). This latter strategy is important because, firstly, where it involves the use of antiretroviral drugs, it can lower the viral load and therefore the risk of transmission; and secondly, the provision of treatment, care and support marks the social acceptance of PLWHA and that makes other prevention strategies easier to deliver.

Unfortunately, where HIV discrimination does occur, particularly structural (i.e., institutional) levels of HIV discrimination, it can be a major impediment to the delivery of appropriate treatment, care and support to PLWHA. It is important, however, to distinguish between two general forms of HIV discrimination. On the one hand, there are forms of discrimination that may be considered ‘legitimate’ or ‘justifiable,’ because they protect a broader public good (UNAIDS, 2000). An example of this may be the prevention of PLWHA from donating blood as a means of protecting the blood supply. On the other hand, some forms of discrimination are quite ‘arbitrary’, either because (a) they do not serve a broader public good, but simply target PLWHA for unfair treatment, or (b) because they are so general in nature as to make unnecessary and unreasonable impositions on the lives of PLWHA.

To date, there have been no studies of structural levels of HIV discrimination, either arbitrary or legitimate forms, and this is the focus of the present study.

Methods

The aim of the study was to identify the occurrence of arbitrary and legitimate (justifiable) discrimination against people living with HIV/AIDS (see UNAIDS, 2000, for criterions for determining arbitrary versus legitimate discrimination). With appropriate variation, this study followed the UNAIDS Protocol for the Identification of Discrimination Against People Living With HIV (the Protocol)(UNAIDS, 2000). However, where the Protocol focuses on ten key areas of social life, with 37 situations encompassing those areas of social life, this paper focuses on only one of those key areas of social life health because it is this area that is central to the delivery of care and support to PLWHA (Reidpath et al., 2004).

The study was based in Hanoi, Vietnam; chosen because Hanoi is one of five cities with the highest HIV prevalence in Vietnam. Being the national capital, it also has a significant place in the setting of national policy. Finally, the research team was Hanoi-based, making the location cost effective.

The reference period for the study was seven years (1996 2002) and the data collection occurred in October and November 2002. The reference period was chosen because it post­ dates the single most significant piece of HIV/AIDS-related national legislation, the Ordinance of HIV/AIDS Control (the Ordinance), promulgated in August 1995.

Sample

The study involved interviews with key informants, direct witnesses and the collation of legislation and policy affecting PLWHA. Key informants were people working in organizations likely to have contact with or have an effect on the lives of PLWHA. Direct witnesses were PLWHA who were in a position to witness directly the effects of legislation, policy or organizational behaviour on the lives of themselves, their friends and their family.

Seventy-five key informants were interviewed, most of whom were people working at the grassroots level as health workers, social workers, women’s union members, teachers, educator-wardens working in commune health stations, health units in prisons, centres for drug treatment, centres for women’s rehabilitation, communicable diseases departments and tuberculosis departments of hospitals. Of the key informants, 69 were people who have met and worked directly with PLWHA in various areas and through various tasks including diagnosis, counselling, home-based care, curative services and education. The remaining six of the key informants were AIDS specialists and policy makers at the city and district level.

Potential key informants were identified purposely by members of the research team from previous work they and their colleagues had conducted in the area. In identifying participants, priority was given to key informants who had the opportunity to meet and to work with PLWHA, injecting drug users (IDUs) or commercial sex workers (CSWs). Further participants were then identified through snowball sampling. All key informants were voluntary participants in the study.

Seventy-seven direct witnesses (39 female and 38 male) were interviewed. All the direct witnesses were people living with HIV/AIDS. The women were mainly CSWs and/or IDUs rehabilitated in the Hanoi Centre for Education and Social Labour. A few of them were women who were infected by their husbands. Thirty-eight of the IDUs were men, mainly living with their families or in rehabilitation centres. All direct witnesses were voluntary participants in the study.

Fortuitously, just prior to the study, the National AIDS Standing Bureau had completed a systematic review of legislation, regulation and policy related to HIV/AIDS control (National AIDS Standing Bureau, 2002). The material included 60 documents from the National Assembly, the Government and various sectors including Health, Employment, Justice, Police, Social Affairs and Education. The review was used as the basis for the identification of documents relevant to this study.

Procedure

Under the Protocol, the structure of the research team is intended to be broad based, with skills across a diversity of areas. Because the team is not only responsible for the collection of the data, but also the interpretation of the nature of the discrimination (i.e., arbitrary or legitimate) , knowing the structure of the team provides critical insight into the process of the research.

The research team comprised three sub-teams. The first sub-team, focusing on legislation and policy, was made up of a senior member of staff from the National AIDS Standing Bureau (NASB), an NASB lawyer and a Ministry of Justice lawyer. The second sub-team, focusing on key informants, comprised six members, each with at least five years’ experience in the HIV/AIDS area. These included people from the NASB, the Women’s Union, the National Centre for Social Sciences and Humanities and Cooperation Internationale pour le Developpement et la Solidarite (International Cooperation for Development and Solidarity), an international NGO in Vietnam. The third sub-team, focusing on direct witnesses, was made up of four members of staff from the Vietnamese Community Mobilization Centre of HIV/AIDS Control (VICOMC), including the vice­ director. This took advantage of VICOMC’s involvement with health promotion and harm minimization training programmes with PLWHA nationwide since 1996. VICOMC has close relationships with the Hanoi AIDS Standing Bureau, the Hanoi Centres for Drug Treatment and Women’s Vocational Education and Rehabilitation. It was with the support of these local authorities and through several Friends-Help-Friends Groups (i.e., peer support networks) that direct witnesses were recruited.

Key informant and direct witness interviews were semi-structured and were guided by the 37 situations across the ten key areas of social life covered by the Protocol. Interviews were conducted one-to-one and were recorded as field notes. Specific quotes were recorded verbatim. Because of the extensiveness of the data, only the data related to the seven situations covered in the key area of health are reported. The situations are:

  1. Refusal to treat on grounds of HIV/AIDS
  1. Different treatment on grounds of HIV/AIDS
  2. Testing without knowledge
  3. Refusal to inform a person of the result of an HIV
  4. Health controls, quarantine, compulsory internment and/or segregation in hospital, clinic, nursing home,
  5. Compulsory notification of HIV/AIDS status to sexual partner(s) and/or relative(s).
  6. Non-confidentiality: supplying names of individuals found to be HIV-positive to any other party or knowingly or negligently allowing confidential files to be

The identification of instances of arbitrary and legitimate discrimination in each of the seven situations was based on discussion about the data amongst the research team. This was further refined with input from attendees at a National Workshop held in Hanoi in March 2003, where preliminary results were presented.

Participation in the study was strictly voluntary. Inthe absence of a formal Ethics Review Board, the project’s Technical Advisory Board acted in that role. The Board included, among others, a senior member of staff from the National Centre of Sciences and Humanities, a senior member of staff from the National AIDS Standing Bureau and a PLWHA. The research was also reviewed independently by the Deakin University Human Research Ethics Committee. The requirement for informed consent in participation may introduce some bias into the results and this is discussed later.

Results

Any analysis of HIV/AIDS-related discrimination in Vietnam can only be conducted against the backdrop of a few key laws. The national Health Law, for instance, states in Article 1 that ‘[c]itizens have the right to enjoy health protection, rest and physical training; protection in labour, nutrition and the environment, sanitation and medical services.’ 1 With respect to medical doctors’ conduct toward patients, Article 25 of the Health Law states:

They [medical doctors] have a responsibility to treat and examine patients, to prescribe pharmaceuticals, to guide disease prevention, to treat disease, to maintain patient confidentiality; [furthermore] they must be ethical, have a sense of responsibility and the spirit to save patients and to conduct themselves according to the rules of their profession [using] approved medical techniques; and to use only methods, equipment and pharmaceutical products adopted by the Ministry of Health . . . [and] . . .they must, in the provision of first aid, consultation or treatment, avoid irresponsible behaviours likely to damage a patient’s health, life, honour or dignity.

These articles provide broad provisions for (a) the protection of the health of all citizens, including PLWHA, and (b) the professional and dignified treatment of all patients by medical doctors. In the treatment of PLWHA, however, some legislation emphasizes a strong mutual obligation between the health care fraternity, the community, the family and PLWHA. These obligations are not simply bi-directional. A medical doctor will have obligations towards the PLWHA, the family and the community; family will have obligations towards the PLWHA and the community; and PLWHA will have obligations to family and community.

The Ordinance by the Permanent Committee of the Vietnam National Assembly (31.5.95) states in part that:

People living with HIV/AIDS (PLWHA) are not to be discriminated against but they must implement preventive measures to protect the general community’s health according to legislation (Article 4).

Embodied in that single article are the obligations of the community not to discriminate against PLWHA and the obligations of PLWHA to protect the community from the transmission of HIV. Article 11(2) stipulates the obligations of family to care for a member who is a PLWHA ‘. . .so that he or she can put him or herself in tune with the family and the community’. Government Decree No. 34/CP (01.6.96), Article 6(3) reinforces the relationship between family, community and PLWHA, stating a responsibility ‘. ..to create favourable conditions for people living with HIV/ AIDS to be cared for spiritually and physically by their families and community’.

Article 20(1) of the Ordinance on HIV/AIDS Control stipulates an obligation on medical doctors to care for AIDS patients and also to educate the relatives about the prevention of HIV transmission. Government Decree No. 34 also prohibits discriminatory treatment towards PLWHA in health care settings.

Each of these obligations can also create a tension between the rights of the PLWHA and the obligations of PLWHA to protect the health and wellbeing of the community. Each of the seven situations covered by the key area of health will be examined below, including legislation and policy with data from key informant and direct witness interviews.

The manner in which the broad thrust of the legislative framework integrates with more specific legislation and policy and the manner in which the objectives of the legislation and policy are enacted in health care settings is the focus of the following sections. Each section focuses on one of the situations described in the Protocol that is relevant to the key social area of health.

Situation 1. Refusal to treat on grounds of HIV/AIDS status

Refusal to provide health and medical care on the basis of a person’s HIV status goes to the heart of HIV-related discrimination because it affects access to general health care as well as specific care required because of the immuno-compromised status of PLWHA. It is in the Ordinance that the strongest legal protections exist specifically to prevent discrimination against PLWHA. According to the Ordinance, there must be no discrimination towards PLWHA and refusal to treat a person on the grounds of HIV status is forbidden. Article 20(1) of the Ordinance states that ‘[p]hysicians and health workers are responsible for the treatment of PLWHA’ and Article 20(3) states that ‘[r]efusal to treat PLWHA is strictly forbidden’. This right of access to treatment is further reinforced in Government Decree No. 34/CP, Article 7, which states that PLWHA ‘. . .with opportunistic infections are to be treated in government health facilities. It is forbidden to refuse to treat or to discriminate against any cases’. In the key area of health, therefore, strictly enforceable laws exist to protect the rights of PLWHA.

Perhaps the most complete policy statement on treatment is contained in the Ministry of

Health Directive No. 10/ BYT-CT on the improvement of prevention of HIV/AIDS infection. According to the directive, medical treatment facilities are not allowed to refuse treatment to PLWHA and the directive specifies a strategy for the treatment of HIV-positive patients:

  1. In localities with a high prevalence of severe AIDS cases needing professional intervention, rooms arc to be made available on the communicable disease ward at provincial general If there are insufficient beds, then patients with opportunistic infections may be located on related specialty wards, such as dermatology or tuberculosis wards.
  2. Mild cases of AIDS should be treated mainly within the community and
  3. The management, treatment and follow-up of AIDS patients at home will be assumed by district health

Notwithstanding the existence of laws to protect PLWHAs’ right of access to treatment, there are, in reality, various mechanisms by which staff can discriminate against patients on the basis of their serostatus. According to one key informant (YT29), staff in the admissions office of one hospital legitimized their discriminatory practice by saying ‘there are no AIDS patient beds here’ and ‘there are no HIV/AIDS specialist doctors’. By way of further explanation, the key informant was told that, ‘It is a hospital [internal] regulation not to treat PLWHA because the hospital lacks the necessary medicines’. The key informants’ observation was reflected in the experiences of direct witnesses. Several direct witnesses observed that while some medical doctors and health workers showed compassion towards them, refusal to treat on the grounds of HIV status was, nonetheless, fairly common.

Confirming the observation of the key informant, three direct witnesses recounted negative experiences related to pregnancy. One was refused admission for antenatal care (Bd2), one for an abortion (LD 11) and one to give birth. In each instance, the refusal to treat was based on the woman’s serostatus. Treatment was also refused to Bd2 when the time came to give birth. She sought and was granted a referral to a tertiary care hospital, but the referral letter identified her HIV status:

The admissions department of the [tertiary] hospital told me they couldn’t admit pregnant PLWHA because there were no AIDS drugs available. Instead, they gave me another letter of referral to a second hospital. The admission department of the second hospital told me that the facilities in the department of obstetrics were undergoing repair and I would have to return to the first hospital. On my return to the first hospital they again refused admission. I was angry and. . .decided not to go to any of those hospitals. I returned to the district hospital and safely gave birth. Fortunately, my 27- month old child is HIV-negative.

Following the Protocol, the research team formally discussed Bd2’s experience. The purpose was to formulate a view about (a) whether discrimination had occurred, and (b) if it had occurred, whether it was arbitrary or legitimate. That discrimination had occurred seemed very clear to the team. Every pregnant woman whose HIV status was not declared on the referral letter was admitted to both tertiary care hospitals. The reason for refusing admission to Bd2 was clearly based on her HIV status, as disclosed in her letter of referral.

The discrimination towards her appeared to be a result of both action and omission. The hospitals refused to provide a service (omission) and they shunted her from one delivery setting to another (action). Not only was the behaviour towards Bd2 discriminatory, it was also illegal. The team concluded that thre was no justification for the discrimination and that it was probably a manifestation of the fear of HIV cross-transmission.

Although there were legal protections against discrimination in place, there were clear instances of arbitrary discriminatory practice towards PLWHA.

Situation 2. Different treatment on grounds of HIV/AIDS status

The laws in Viemam relating to the types and quality of health care available to PLWHA are not as encompassing as those on refusal to treat. Nonetheless, in law and regulation, there are clear indications that PLWHA should not receive different treatment simply because of their HIV serostatus. The Ordinance, for instance, stipulates that any PLWHA with an opportunistic infection should receive treatment from medical doctors specializing in that particular infection (Article 20(2)) and treatment cannot be refused (Article 20(3)). This clearly sets out a legally enforceable expectation of equality of treatment. A Ministry of Health Resolution 2557 (26.12.96) (the Resolution) seeks the same quality of treatment for PLWHA with a psychiatric disorder, stating that PLWHA with a psychiatric disorder will be managed and cared for according to the regimen applicable to psychiatric patients.

Unsurprisingly, here as well, there is a gap between the law and practice on differences in treatment of PLWHA. The fact that the legislation is not as broad on differences in treatment also, potentially, provides more opportunities in health care settings for differences to arise.

One key informant observed that there is a tendency either to refer PLWHA to higher-level hospitals or to be less careful during a consultation. Confirming this, a direct wimess observed that, ‘…there was some distance between me and several caregivers. . .. They were afraid of me, although at that time I had no symptoms. . .. They used a straight-edge ruler to move my medical notes, which recorded that I was a PLWHA.’ Two direct wimesses also observed that the attitude of the health workers was frustratingly apathetic towards PLWHA. There were also ‘…several cases, in hospital V. [where] after having an operation, HIV­ positive people were immediately transferred to other hospitals with AIDS specialists.’

Three direct wimesses, TX 1, TX2 and TX3 explained that, while hospital staff appeared to be concerned with their welfare, there was something strained about the way they were cared for. In one extraordinary incident, a direct witness was told to take a sample of his own blood, because the staff were concerned about the risk of HIV transmission.

In Situation 2, arbitrary discrimination occurs in practice, even though there is a legal requirement for equality of treatment without regard to a person’s HIV serostatus. Even in settings where health care staff appear to try and deliver equal service, the delivery of care can be strained and there is a strong sense that it is quicker and less thorough when dealing with PLWHA.

Situation 3. Testing without knowledge (and mandatory testing)

Mandatory testing and testing without knowledge have been areas of considerable concern in the HIV literature and they are not without controversy (Danziger, 1996). In Viemam, the Ordinance (Article 16(2)) states that public health facilities carry a responsibility to conduct HIV testing on people engaged in high-risk behaviours. The ‘responsible person’ at the health facility has the right to decide if a person engaged in high-risk behaviours requires testing and, when required, public health facilities have the responsibility to conduct those tests. This is re-affirmed in the Government Decree No. 34/CP (Article 8): ‘The person in charge of health units at the district level upwards has the right to ask people engaged in high-risk behaviours to undergo HIV testing.’

The Resolution specifically focuses on testing of people (IDUs, CSWs and people with other sexually-transmitted infections) in detoxification or rehabilitation centres who were engaged in high-risk behaviours. This relates, by definition, to most if not all the people in the centres. The relevant part of the Resolution states that the ‘high-risk’ individuals ‘…must have an HIV test if counselling does not work’.

The regulatory framework on HIV testing is balanced by a requirement for pre- and post­ test counselling. According to the Resolution (Part Il(3)), people with a suspected HIV infection must be counselled prior to and after testing. The notion that HIV testing should be voluntary and accompanied by counselling is also contained in Inter-Ministerial Circular No. 14, between the Ministry of Health and the Ministry of Labour Veteran Invalidity and Social Affairs (MOLISA), dated 16 June 2000. This Inter-Ministerial circular states that within 15 days from the date of admission, consultation and treatment teams in collaboration with local health organizations have the responsibility of providing counselling and education on HIV/AIDS to admitted persons so that they may engage in voluntary HIV testing.

The reality of testing is that it often does occur without the knowledge of the person being tested which means that the requirement for pre-test counselling could not have been performed. A number of key informants confirmed this; one (YT4) said that, ‘[w)e do not often explain HIV testing to the person but to their relatives, because we do not want the person to become pessimistic. We tell them that we are doing basic testing, for hepatitis B virus.’ Another key informant (YT23) explained that, ‘. . .in an ophthalmology hospital, HIV testing was conducted [routinely and) without explanation and that the laboratories were so busy that they have no time to do pre- or post-test counselling.’

The legal situation is that people engaged in high-risk behaviours are encouraged to undergo HIV testing (i.e., voluntary testing). They may be required to undergo testing if they do not volunteer (i.e., mandatory testing). However, whether testing is voluntary or mandatory, pre- and post-test counselling should always be made available. This means that testing without knowledge should not occur.

In law and policy, there is clear discrimination. People who are at high risk of being HIV­ positive are more likely to be encouraged to undergo testing. This legal position, however, is legitimate given the need to provide appropriate treatment and counselling to PLWHA and to ensure the safety and protection of the health care staff, family and community. In contrast, the failure in practice to provide pre-test counselling and, therefore, the implicit engagement in testing without knowledge, is a form of arbitrary discrimination.

Situation 4. Refusal to inform a person of the result of an HIV test

 Meaningful post-test counselling requires that people who are tested are actually informed of their serostatus. This requirement is covered in the Resolution. Inter-Ministerial Circular No. 14 between the Ministry of Health and MOLISA states that:

Test results must be conveyed directly and in a private place. No information should be conveyed by letter, through telephone or other means. If the test result is positive, the person, on receiving their test result, must be counselled on psychology and society. The result must be kept confidential.

The requirement to inform a person of their serostatus following an HIV test is also complicated by the informing of  intermediaries. This is discussed in more detail in Situation 6. However, a number of key informants (YT8, YT2) reported that, after HIV testing, it was relatively common for family members, rather than the person who was tested, to be informed about the test results. This happened out of concern for the psychological effect of the news on the HIV-positive person. The family was seen to be better able to deliver the news in a way that would be least stressful to the PLWHA. Similar practices were held in prisons, centres for drug treatment and the women’s vocational training centres. Here, the concern was that directly informing the person who was tested of the result could result in a disturbance and a loss of discipline (YT1, YT 16 and YT28). There was another case reported of a PLWHA teenager who was not informed of the test result, but whose grandmother was (YTl 1). This will, presumably, become a more common scenario if the epidemic continues to spread and mother-to-child vertical transmission rates increase.

One key informant described a situation in which a PLWHA ‘. . .first learned of his serostatus from a nurse who informed him [bluntly) without providing any counselling or support [and] he subsequently attempted suicide.’

The legal intention is that PLWHA should be informed of their serostatus and that this should be done as part of a post-test counselling process. There did not appear to be any instances in which a PLWHA was not informed; however, the manner in which they were informed was often circuitous and certainly not a part of a formal post-test counselling process. This appears to have been done, generally, with the best of intentions to avoid stress or disturbance.

Situation 5. Health controls, quarantine, compulsory internment and/or segregation in clinics, hospitals and nursing homes

 According to the Resolution, Part 11(1b), ‘Central, provincial and district hospitals should monitor and give good care to [HIV-positive] in-patients and out-patients in different specialized departments. Patients can be treated at the commune health station or at home. AIDS patients and HIV-infected people with mental disorders will be managed and cared for according to the [appropriate) regime for mental patients.’ This Resolution carries with it a presumption of non-segregation.

Inter-Ministerial Circular No. 14, between the Ministry of Health and MOUSA, deals with non-segregation of PLWHA in detoxification or rehabilitation centres, stating that, ‘PLWHA will share accommodation, rooms, [as well as] learning, labour and production activities with other people at treatment units’. This policy is generally well adhered to in practice, in part because managers are concerned that isolating PLWHA would disrupt the orderly regulation of life within the centres. Having said that, women with HIV/AIDS in Hanoi Centre No. 2 for Education and Social Labour were, in fact, living together in separate groups but said that it was, ‘… more convenient because we feel more comfortable when living together and we can share our destiny, showing our compassion and support. In any case, most HIV-negative women in the other groups here are sympathetic towards us.’ There were no instances of arbitrary discrimination revealed for this situation and the written legislation and policy does not favour segregation. The recorded instance in which it did occur in Hanoi Centre No. 2, however, appeared to be part of a thoughtful process of providing extra support to PLWHA, which they appreciated. Indeed, four direct witnesses from this centre attended the National Workshop in March 2004 to share some of their positive experiences.

Situation 6. Compulsory notification of HIV/AIDS status to sexual partner(s) and/or relative(s)

There is strong concordance in legislation, policy and practice around the notification of a spouse about the HIV-positive status of his or her partner. According to the Ordinance, (Article 23), ‘[i]f the husband or the wife knows his or her HIV sero-positive status, then s/ he has to inform the other [partner]. If s/he does not, then the health unit has the responsibility to do so.’ This position is repeated almost verbatim in Government Decree. There was no indication by key informants or direct witnesses that this position was not adhered to. The health counsellors working with PLWHA, however, encourage voluntary notification to avoid the need for notification by health authorities. It was also apparent from direct witness interviews that many PLWHA were afraid that disclosure of their HIV status to a spouse would lead to divorce and separation.

After discussion among the members of the team, it was decided that the legal obligation to inform a spouse of a person’s HIV-positive serostatus was a form of legitimate discrimination . Similarly, according to the majority of participants at the National Workshop in Hanoi, informing a spouse is appropriate and reflects traditional social values about faithfulness and mutual obligation. A minority of attendants proposed to eliminate this process.

Situation 7. Non-confidentiality: Supplying names of individuals found to be HIV-positive to any other party or knowingly or negligently allowing confidential files to be consulted

The final situation linked to HIV discrimination in the key area of health is associated with a failure to maintain patient confidentiality. The written provisions in Vietnam related to this situation are somewhat mixed. Government Decree 34, (Article 5(2)) states that, ‘[o]rganizations and individuals once informed of the test result of HIV-infected persons have the responsibility to keep the result confidential’. This is reinforced in Article 18 of the Ordinance: ‘Health workers and laboratory technicians have the responsibility to keep secret the name, age and address of the tested person’. The obligation to maintain confidentiality of the test result can also extend to the tested person him- or herself (Inter­ Ministerial Circular No. 14); this latter requirement seeks to protect PLWHA from discrimination by others.

Notwithstanding the need to maintain strict confidentiality, it is also recognized in Vietnam that there are circumstances in which others may need to know a person’s HIV status. Article 18 of the Ordinance, for instance, which stipulates the need for confidentiality, also states that responsible health staff have the right to inform the spouse, family members and organizations offering direct care to a PLWHA about the person’s HIV-positive status.

Notwithstanding the restrictions on disclosure, several direct witnesses described instances when their HIV-positive status had been inappropriately disclosed. One direct witness, Bd7, who was an IDU, reported that a police officer, when trying to intimidate another IDU living on the ward, pointed to Bd7 and said that they should give up drugs before they became HIV-positive like Bd7. The conversation was so open that the disclosure was not just restricted to this single other person but to many others on the ward. Similar reports were provided by three other direct witnesses, whose HIV status had been revealed by police officers who were not caregivers . In another instance, a practitioner working in a hospital revealed the HIV status of a patient to colleagues.

Revelation of HIV status is acceptable under some circumstances. This would be a form of legitimate discrimination. It is legitimate when the disclosure is for the purposes of providing better care for the PLWHA or for protecting health care providers or relatives who might otherwise be at risk. There are, however, clear instances when the disclosure of a person’s HIV status represents a form of arbitrary discrimination because it is not governed by a responsibility to the PLWHA, carers or family.

Discussion

The laws in Vietnam provide the framework within which one may judge the nature and type of health care-related discrimination to which HIV-positive people are subject. The reality is that discrimination is part of the daily experience for HIV-positive people living in Hanoi. Although there are strong protections for all citizens against arbitrary forms of health-related discrimination, balance is the key: balance between the needs and rights of the individual, on the one hand, and obligations of the individual to this society, on the other. It is within this structure of mutual obligation that the nature of discrimination needs to be understood.

The Health Law, the National Ordinance on HIV/AIDS Control, and Government Decree No. 34/CP are concerned with the relationship between the individual (and his or her needs for treatment, care and support) and the community and its need for protection from the harms that the individual may create. As a package, the laws guarantee the provision of health services to PLWHA.

In practice, however, PLWHA experience a range of forms of discrimination in the health care sector. ‘Refusal to treat’ is one of the most pernicious forms of discrimination and it is also a form that carries no legitimacy in law. ‘Shunting’ is, perhaps, the simplest of all forms of refusal, where a service provider claims some incapacity to treat and refers patients on to an alternative service provider. For Bd2, whose experience was described in some detail, shunting continued until she elected not to pursue further referrals. Educating health care services about their obligations, reinforced with the appropriate application of legal redress, would encourage providers not to discriminate against PLWHA and comply with the law. Where treatment is provided, it may be provided with less quality. One form of this is the strained relationship, in which the very presence of a PLWHA makes the health care providers uncomfortable. This may be understandable, although not excusable, particularly for health care providers who have had little experience with, or understanding of, HIV/ AIDS. Here, staff development programmes may be an important mechanism for overcoming the discomfort and strain between carer and patient. However, the content of the education must take into account the specific needs of the health care staff and the underlying psychological, cultural and institutional factors driving the discrimination. Currently, very little research has been conducted to guide anti-discriminatory strategies within specific institutional settings. Amongst the few studies available on the underlying causes of HIV-related discrimination in Vietnam, Khuat et al. (2004) have looked at the factors underpinning the stigmatization of PLWHA using interviews with PLWHA, community members and local leaders in Hai Phong and Can Tho cities. Although their study has made some important general recommendations about how to address discrimination in the Vietnamese context, more information is needed to assess their relevance and application within the health settings.

As a cluster of situations, testing, counselling and confidentiality are fraught and it is these particularly that juxtapose the mutual obligations of the PLWHA with those of the family, the carer and the community. Mandatory testing is seen as an important part of the effort to identify PLWHA, provide care and support for PLWHA and protect the spouse and carers of PLWHA. Where voluntary testing and counselling have been promoted in the international literature, this is still contested and there are some situations in which routine (or even targeted) testing may work better (Danziger, 1996; De Cock et al., 2002). The difficulty of testing becomes acute, however, when it is conducted without a person’s knowledge, which means that it has occurred without appropriate counselling. This is exacerbated when the results of the test are divulged inappropriately.

Vietnamese Jaw carries an expectation that people who are tested will be counselled and that the results of the test will only be revealed to those who need to know them, such as the PLWHA, the spouse and the immediate carers. Unfortunately, this has not been the case in practice and marks an area in which significant improvement needs to occur.

Vietnam is facing a considerable health burden in the future associated with the spread of HIV/AIDS. Creating an environment in which PLWHA can receive treatment, care and support, free from discrimination, will be an important part of any HIV prevention strategy. The legislation for this co occur is, generally, in place, although some changes may need to be made. However, in practice, the health care sector needs to change the systems for managing people with HIV/AIDS so that they do not experience arbitrary discrimination. This will necessitate the enforcement of existing Jaws that protect PLWHA, as well as the development of institutional policies and practices that educate health service providers, PLWHA and their families about what can, and should, be expected of the services.

Aclmowledgements

This research was supported by a grant from the Ford Foundation to Deakin University (Grant No. 1010-1173). For their help and assistance, we would like to thank Ms Kit Yee Chan (Deakin University), Dr Lisa Messersmith (Ford Foundation), Professor Chung A (National AIDS Standing Bureau) and Bill Bainbridge (consultant editor). This research was supported by a Technical Advisory Board, investigators, key informants and direct witnesses, friends-help-friends groups and PLWHA families. Many government officials also provided support and assistance. We would also like to thank the anonymous reviewer for some very helpful suggestions. Dr Joe Thomas was a principal investigator of the project from May 2001 to March 2003.

Note

As much as possible, the translation of policy and legislation aimed to convey the sense and intent of the original, and may not represent a strict legal translation.

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