3. Encouraging beneficial disclosure

Overview

"Disclosure" is a neutral term. In the context of HIVAIDS, it refers to the act of informing any individual or organisation (e.g. health authority, employer, school) of the HIV status of an infected person, or it refers to the fact that such information has been transmitted, by any means, by the person him or herself, or by a third party, with or without consent (from Definition of Terms in Annex 1).⁶

⁶From “Questions and answer on Reporting, partner notification and disclosure of HIV and/or AIDS serostatus, Public health and human rights implications”, WHO/UNAIDS, June, 1999, Geneva (need publication cite???)

However, the purposes and the consequences of disclosure may be beneficial or harmful. Examples of beneficial disclosure involve instances where a person living with HIV/AIDS informs a sexual partner of his/her status for prevention purposes, or informs family, community members or health care workers in order to share vital personal information and obtain support. Or disclosure may involve the sharing, on a confidential basis, by a health care worker of information regarding a HIV/AIDS case to other health care workers involved in the management of the patient, or to a health authority for surveillance purposes; or where necessary, to a partner of an HIV positive person to prevent onward transmission of HIV (see section below on Partner Counselling).

Examples of harmful disclosure involve cases where disclosure is done without the consent of the person living with HIV/AIDS and has negative consequences for him or her, such as stigma, abandonment, physical violence, imprisonment, loss of job, housing, and other forms of discrimination. Harmful disclosure may also impact negatively on prevention and care activities. Where people fear forced testing, or disclosure involving lack of confidentiality, they will avoid HIV counselling, testing, treatment and support, because these are likely to mean that their HIV status will become known against their will and that they will face stigma, discrimination, lack of privacy and other negative consequences. Thus, fear of lack of confidentiality and forced disclosure drives people away from HIV services, and consequently, there is less chance to encourage and empower people to change their behaviour either to avoid getting infected or to avoid passing on their infection. It may also drive people away from other health care services, such as antenatal care or blood donation.

UNAIDS and WHO encourage beneficial disclosure. This is disclosure that is voluntary; respects the autonomy and dignity of the affected individuals; maintains confidentiality as appropriate; leads to beneficial results for that individual, and for his/her sexual and drug-injecting partners and family; leads to greater openness in the community about HIV/AIDS; and meets the ethical imperatives of the situation where there is need to prevent onward transmission of HIV.⁷

⁷For discussion of cases where it may be appropriate to disclose someone’s status without their consent in order to prevent onward transmission of HIV, see section on Ethical partner counselling at page ???.

Such beneficial disclosure, with its elements of voluntariness and confidentiality, not only maintains ethical principles, but also serves a direct public health function, because it encourages people to access HIV prevention and care services. It does this by establishing a climate of trust between health care providers and those that need HIV services, allaying their fears, and respecting them as people who can and will make the right decisions regarding their behaviour. Beneficial disclosure also serves the goal of opening up the HIV/AIDS epidemic. As more people feel able and willing to disclose their status, there grows a critical mass of individuals and families within a community, and indeed within a nation, who are openly involved in dealing with the epidemic in positive and supportive ways. As a consequence, discrimination, stigma and secrecy are reduced.

Nevertheless, preconditions are necessary to promote beneficial disclosure and to encourage people to access prevention and care programmes. People must have access to voluntary testing and counselling (VCT) services in which they can learn their HIV status and receive support and referral in dealing with the news. Furthermore, they must have an incentive to find out their status in terms of it meaning greater social support, access to health care options, and an increased ability to live positively with their status, whether negative or positive. Finally, they must not fear stigma and discrimination if found to be HIV positive.

Creating incentives to disclose by improving access to voluntary HIV counselling, testing, treatment and care

It is estimated that up to 90% of HIV positive people in low income countries do not know their HIV status.⁸ In large part, this is due to the fact that there are few voluntary counselling and testing (VCT) facilities available to the populations most affected by HIV/AIDS. However, even where testing is available, many people do not want to be tested because, there is a perception that "nothing is to be gained" by knowing that one has HIV. If one is poor, there will be little access to HIV/AIDS treatments and care. Furthermore, one is likely to face stigma and discrimination if found to be HIV positive, as noted above.

⁸See Zambia sexual behaviour survey 1998, MEASURE and Central Statistical Office, Republic of Zambia,: 45; Tyndall et al, “Evaluation of AIDS control strategies in women attending a family planning clinic in Nairobi, Kenya, International Conference AIDS, 1996, abstract no.We.D.3760

However, even in resource-poor settings much can be done to improve access to voluntary counselling, HIV testing, treatment and care, though this may involve a shift of resources from "traditional" HIV programmes and activities. Primarily, there must be greater investment in establishing voluntary testing and counselling services in communities. Secondly, there must be created incentives to test one's status. These should take the form of community services providing support, treatment and care. Finally, disincentives to test, such as stigma and discrimination should be removed.

There are insufficient voluntary testing and counselling services in the communities most in need of them.⁹ More resources of national AIDS programmes should be devoted to establishing such services.¹⁰ VCT services can take many forms. Most important is that: (1) they are integrated into existing services, where applicable (antenatal care, STI clinics, family health clinics); (2) they are user-friendly (particularly to youth and women); (3) they are accessible to marginalized groups (e.g. the poor, rural populations, sex workers, drug injectors, migrants); (4) and they tie the individual using them into other support and care options (e.g. referral to STI services, support groups, family outreach programmes).¹¹ The creation and availability of such services is a prerequisite for people to learn about their HIV status and to find ways of dealing with it positively, including through disclosure.

⁹For more on the availability of VCT, see Report on the Global HIV/AIDS Epidemic, June, 2000, UNAIDS/00.13E, Geneva.

¹⁰See “Report of the Meeting on Theme Groups on International Partnership against HIV/AIDS (IPAA) in Africa”, Nairobi, 24-27 January 2000: 8, where there was a call to accelerate operation research on VCT and mother to child transmission prevention “in order to make these interventions central in the implementation of the IPAA”, available from UNAIDS, Geneva.

¹¹See “Voluntary Counselling and Testing Technical Update”, UNAIDS, May, 2000, Geneva.

However, the existence of VCT services is not in itself enough to get people to test their HIV status. There must be incentives to test, and these should take the form of greater availability and affordability of care, treatment, and support. In resource poor settings, treatment, in the form of drugs, and care options, are very limited. However, these obstacles can in part be overcome by innovative and far-reaching community-based programmes. Such programmes offer outreach to affected families, voluntary and confidential counselling and testing, support groups, home visits, follow-up, and involvement of people living with HIV/AIDS in prevention and care activities. They may also offer models of how to "live positively" with HIV/AIDS, wherein people maximise their personal and social resources, live as best as possible in the present, and plan realistically for the future.

Examples of such effective community-based programmes can be found in Uganda, Tanzania and Thailand where campaigns by non-governmental organisations (NGOs) to encourage testing have created more openness and discussion about HIV.^12,13,14 In the parts of these countries where HIV testing has been made reasonably accessible to affected communities, the synergistic link among reducing stigma, increasing voluntary testing, and encouraging disclosure has been confirmed. Each of these activities reinforces the other and leads to greater numbers of people taking advantage of voluntary counselling, testing and support.^15,16 which leads to more voluntary disclosure (to spouses, lovers, family members, friends and health care providers), the adoption of low-risk behaviours, and a movement towards positive living.^17,18

¹²UNAIDS Case Study, Knowledge is power: Voluntary HIV Counselling and Testing in Uganda, June 1999, Geneva.

¹³Vollmer N, Valadez J (1999). A psychological epidemiology of people seeking HIV/AIDS counselling in Kenya: an approach for improving counselling training. AIDS, 13: 1557-1567.

¹⁴Kalldjian L, Jekel J, Friedland G (1998). End-of-life decisions in HIV positive patients: the role of spiritual beliefs. AIDS, 12: 103-107.

¹⁵Meursing K and Sibindi F. (1995). Condoms, family planning and living with HIV in Zimbabwe. Reproductive Health Matters, 5: 56-62.

¹⁶Meursing K (1997). A World of Silence. Living with HIV in Matabeleland, Zimbabwe. Royal Tropical Institute, The Netherlands.

¹⁷Lie G, Biswalo P (1996). “Positive patient’s choice of a significant other to be informed about the HIV test result: findings from an HIV/AIDS counselling programme in the regional hospitals of Arusha and Kilimanjaro, Tanzania” AIDS Care, 8(3), 285-296.

¹⁸TASO Uganda, The Inside Story. Participatory evaluation of the HIV/AIDS Counselling, Medical and Social Services 1993-94. WHO/GPA/TCO/HCS/95.1.

When such programmes are well integrated into the community and are responding to its needs, they can have a profound influence on how HIV/AIDS is perceived at the individual, family and community levels. Positive-living models, as well as the active involvement of people living with and affected by HIV/AIDS, help to change attitudes from stigma and discrimination to respect and support. Affected families and communities are able to embrace their situation, are given support in how to best deal with it, and the HIV positive member remains a positive contributor to family and community efforts. This helps to reduce the stigma associated with HIV and AIDS, and change public perceptions of HIV and people living with HIV/AIDS. It also helps to encourage more people who do not know their status to come forward voluntarily for counselling and testing.

Thus, there needs to be greater investment in creating the facilities for HIV testing, as well as in supporting community-based programmes that create a supportive environment that encourage people to come forward for HIV testing, counselling, care, treatment and support. In such a context , beneficial disclosure will increase and lead to more prevention (protection of those not yet infected), and more care and support, for those already infected.

Removing disincentives to disclose by reducing stigma, discrimination and lack of confidentiality

Despite the fact that millions of people world-wide are infected with HIV, there is still considerable shame, secrecy and fear surrounding HIV; and people living with HIV and AIDS are highly stigmatised. HIV is also the cause of human rights violations and acts of discrimination. Because of the stigma and discrimination surrounding HIV/AIDS, those who do know their HIV status are afraid to disclose it due to the threat of severe adverse consequences, such as job loss, social ostracism, violence and threats to their lives. Those who do not know their status are afraid to get tested if they fear that the results will be made known against their will and they will face stigma and discrimination.

Thus, to encourage voluntary testing, beneficial disclosure and use of HIV services, the disincentives of stigma and discrimination, and lack of confidentiality, must be removed. Many steps can be taken to reduce stigma and discrimination. One of the most under-utilised has been public information campaigns which focus specifically on the promotion of tolerance, compassion and non-discrimination. Though the world has been inundated with public information regarding the fact that HIV cannot be transmitted casually, this information has not done enough to alleviate fear of HIV and AIDS and of people living with them. Public information campaigns should be conducted which involve creative, attractive, powerful messages against discrimination and stigma. There can also be hosting of public forums on HIV/AIDS, and/or community discussion groups, which focus on compassion, tolerance and support.

Where there is protection against violence and discrimination, public figures (actors, politicians, athletes), including those living with HIV, should be involved in these public campaigns. The involvement of people living with HIV/AIDS in public campaigns, and in policy, programmatic and community activities is critical to giving a human face to the epidemic, reaffirming the value of people living with HIV/AIDS, and changing attitudes of stigma. It also ensures that policies and programmes will be sensitive to the actual needs and realities of those affected by HIV/AIDS.¹⁹

¹⁹For more on the involvement of people living with HIV/AIDS, see From Principle to Practice, The Greater Involvement of People Living with HIV/AIDS, UNAIDS/99.43E, 1999, Geneva.

Other measures can be undertaken at a national level, such as the enactment of laws and policies against HIV-related discrimination²⁰ and against breaches in confidentiality and informed consent. One essential step is the training and sensitisation of professionals that work with people affected by HIV/AIDS. It is often at the hands of such professionals that people affected by HIV/AIDS suffer the worst discrimination, when in fact, it is the professional and ethical responsibility of these professionals to treat people living with HIV/AIDS with dignity and compassion, and to protect their confidentiality in appropriate ways. Key professionals who might benefit from training in non-discrimination, confidentiality and informed consent are: health care workers, police, social service providers, lawyers and judges.

²⁰See Handbook for Legislators on HIV/AIDS, UNAIDS/IPU, UNAIDS/99.48E, 1999, Geneva.

Health care workers should be more empowered to handle the medical, as well as psycho-social, management of clients with HIV/AIDS. This should include training and empowerment regarding universal precautions against transmission of infectious diseases, as it is the fear of transmission of HIV among health care workers that often leads to stigma and discrimination against people living with HIV/AIDS.²¹ Experience has shown that the impact of this training in health settings needs regular monitoring and staff updates to ensure that infection control procedures are maintained.²²

²¹For examples and more discussion, see Bharat, Shalini, “HIV/AIDS Related Discrimination, Stigmatisation and Denial in India – A study in Mumbai and Bangalore”, 1999, available from UNAIDS, Geneva.

²²See Miller, D. Dying to Care ?: Work, Stress and Burnout in HIVAIDS, London, Routledge, 2000

Recommendations regarding encouraging beneficial disclosure:

· Conduct public information campaigns and community forums aimed at promoting tolerance, compassion, understanding, and the reduction of fear, stigma and discrimination.

· Encourage participation of people living with HIV/AIDS in public information campaigns and in HIV programmes and policy formulation.

· Establish more voluntary counselling and testing services (VCT), including in rural areas and for marginalized groups.

· Support governmental agencies, NGOs and CBOs to make community-based services, including VCT, family outreach, community support, positive living, support groups, and care options more widely available.

· Encourage the media to report on HIV/AIDS in a responsible, non-discriminatory and non-sensational manner.²³

²³See Handbook on media, don’t have cite ???

· Train health care workers in the management of HIV and universal precautions, in attitudes of non-discrimination, acceptance and compassion, and in the principles of confidentiality and informed consent.

· Train other professionals (social workers, police, lawyers, judges) in attitudes of non-discrimination, acceptance and compassion, and in the principles of confidentialiy and informed consent.

· Train key personnel in non-health employment settings, including human resource management in industry, in promoting non-discriminatory practices in the workplace.²⁴

²⁴For an example of this type of activity, see the Intersectoral Committee on AIDS and Employment/OATUU: “Labour Relations Regulations on HIV/AIDS and Employment”, ICAE/OATUU, Zimbabwe, January, 1999 (SI 202 1998)

· Enact or reform of laws, administrative guidelines and professional codes of conduct to prohibit discrimination and breaches of confidentiality related to HIV status.

· Create legal support services for those who have suffered discrimination based on HIV status.