Challenges associated with disclosing one’s HIV-positive status

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[L]ack of disclosure has been described legally as fraud, criminal negligence, criminal nuisance, and many other charges in additional jurisdictions. However, these charges assume that everyone can disclose their HIV status at the time of every sexual act. Numerous recent studies demonstrate that there are many valid cultural reasons why individuals do not disclose their HIV status, including fear of domestic violence, fear of familial or partner abandonment, and community rejection. These real impacts make disclosure of one’s status nearly impossible for many, particularly for newly diagnosed individuals who are already trying to absorb the shock of their possible death. For some individuals it is likely that nondisclosure was tied to denial of HIV status and what the implications of that status might mean in terms of safe sex practices.

Heather Worth, Cindy Patton and Diane Goldstein, 2008.1

The tension between the need to maintain control over personal information and the moral and ethical obligation to warn others of the potential for HIV-related risk is at the core of the debate about the use of criminal law to encourage disclosure or punish non-disclosure of one’s HIV-positive status. 

Many HIV-positive individuals find it desirable to share information about their HIV status with their partners. The circumstances and timing often vary, however. Whilst some people are able to tell their sexual partners immediately, others may hold back because of concerns about potential negative consequences.2,3,4 Some HIV-positive people may be reluctant to disclose whilst trust is still developing in relatively new relationships.2,3,4

I just felt kind of dirty, I guess, by being rejected, and knowing that that'll probably happen again has turned me off [disclosing my HIV-positive status] more. (Gay man, Canada, 2008)3

You don’t want your status known, right? So you tell the person you’re gonna have sex with [that you have HIV]. They don’t want to do it then, right? ...but then they tell everybody else ‘He’s got HIV.’ You say ‘Damn, I didn’t want everybody to know. I was just trying to tell her because I wanted to have some sex and now she went and exposed my status. (Heterosexual man, Michigan, United States, 2009)2

I got married in 2004 and my husband started giving me STDs [sexually transmitted diseases]…He goes out with women. When I ask for a condom, or go to the clinic to get treatment, he starts beating me. In January 2006 I went for VCT [voluntary counseling and testing]. He was refusing [to receive an HIV test]. The results came positive. From the time I got the results, he started beating me up. After two months he chased me away. He beat me everywhere. When I was four months pregnant he beat me until the placenta came out. I had to go to the Victim Support Unit [a special unit of the Zambian police that addresses abuses against women and children]. (Mercy Z, Zambia, 2007)5

It's so easy to lose everything you’ve got because you disclose your information and then it goes like a domino ...and then what you gonna do? Can’t get a job, can’t get a girlfriend, can’t do nothing. (Heterosexual man, Michigan, United States, 2009)2

In other cases, discussing HIV in the context of casual, non-formalised or short-term relationships may seem out of step with the behavioural norms that govern those encounters.2[ref][ref]

You can't just meet someone in a bar and then when you're going to have sex with them, say 'By the way I'm HIV-positive'. But you know if you're going to see him more, then you have to be honest and say. But there isn't a rule about how long after you've met someone that you have to tell them. (Gay man, United Kingdom)4

Unless they totally understand the situation and are totally educated on the problem, both totally educated on the do’s and don’ts of this problem, they’ll say ‘no’ [to sexual activity] and then they’ll go... ‘He’s got AIDS over here.’ Then you gotta leave the state. (Man, Michigan, United States, 2009)2

An HIV-positive person may be misperceived as HIV-negative by a sexual partner simply because the partner wrongly interpreted the HIV-positive person’s silence on the matter.4 It is also conceivable that an HIV-positive person may intentionally lead a sexual partner to believe that he or she is HIV-negative. Sometimes this is accompanied by an intention to ‘correct the record’ at a later date when trust and emotional connection have developed.4 For many people HIV disclosure is not an event or a one-time conversation. It is a process that takes time and constant communication.

In addition, some HIV-positive people try to disclose their status to sexual partners in ways that do not include direct and open discussion of HIV. Although this coded or implicit disclosure may lead to miscommunication, this may not be evident to either partner at the time of HIV-related risk-taking.

I’d been openly taking my pills in front of this guy I’d been seeing for weeks. I assumed he knew my HIV status. When I said I was off to my HIV doctor that afternoon it suddenly became apparent that this was not the case. He thought it was not polite to ask what the pills were for... and hadn’t even thought they might be for HIV. (Gay man, Australia, 2005)6

In a 2003 book examining disclosure amongst a wide range of HIV-positive people in the United States, Klitzman and Bayer include the example of an HIV-positive man who told his HIV-negative female partner that he expected to have a shorter lifespan, without explaining why. “In retrospect [the female partner] said she understood he was referring to the fact that he had HIV, but there could be lots of reasons someone would make a statement like that,” note the authors. “Indecipherable coded communication is not communication at all.”7

In a view shared by many commentators,8,9,10,11,3,12 participants at the UNAIDS technical consultation on the application of the criminal law to potential or actual HIV exposure or transmission called attention to the potential difficulties that people with HIV may face when considering disclosure of their HIV-positive status. “In particular, people living with HIV may choose not to disclose for fear of rejection, stigma, discrimination, or violence; loss of privacy and confidentiality; or the desire to protect the feelings of others.”13

For women in particular, confidentiality of medical information, including HIV status, is essential to the protection of their human rights, because women may find themselves abandoned, subject to domestic violence, or ostracised if their domestic partners, families or communities discover that they are HIV-positive.14,9

Research from Africa indicates that the fear of disclosure of HIV status is one of the main barriers to women’s use of voluntary counselling and testing services, and that this fear “reflect[s] the unequal and limited power that many women have to control their risk for infection.”15 Further, in some cases – particularly for women – fear of violence may be a reason for not disclosing their HIV status.16

Galletly and Pinkerton point out that what some prosecutors in criminal cases may portray as “a conscious effort to deceive” may instead simply be behaviour that has resulted from “denial, lack of self-efficacy to disclose, or concerns over potential repercussions of disclosure.”8

Worth, Patton and Goldstein further note that “[t]he law may not distinguish between acts engaged in through love or simple lust, but the reasons for disclosing and not disclosing, or waiting to disclose, HIV-positive status would seem to change almost completely based on the forms of intimacy and the relational systems that structure them. Thus, the crucial question of motive is confounded by mixing charges against casual and long-term partners.”

Participants at the UNAIDS technical consultation noted that although all people have an ethical obligation not to cause harm, “a blanket rule of mandatory disclosure of HIV infection would fall most heavily upon those whose circumstances make disclosure difficult or impossible (which would likely be women disproportionately).”17 Consequently, there was consensus that "where there are reasonable fears of violence or abuse related to HIV disclosure or use of HIV prevention methods, the law must not expose people to criminal liability under these conditions. Participants emphasised that those responsible for developing policy and law must take barriers to disclosure (and to taking precautions) into account and develop strategies for overcoming them.”17

Since HIV is a highly stigmatised condition, WHO and UNAIDS support a human rights approach by encouraging “beneficial disclosure” of HIV status. This approach emphasises that individuals should have control over if, how and when to tell others about their HIV-positive status.18 “Beneficial disclosure, they explain, “is disclosure that is voluntary; respects the autonomy and dignity of the affected individuals; maintains confidentiality as appropriate; leads to beneficial results for the individual, his/her sexual and drug-injecting partners, and family; leads to greater openness in the community about HIV/AIDS; and meets ethical imperatives so as to maximize good for both the uninfected and the infected."18

Case study: India – Allowing for barriers to disclosure

The most recent draft of India's HIV/AIDS Bill includes a legal duty for people living with HIV to notify a sexual partner of one’s HIV status, engage in safer sex practices, and to share only sterilised drug paraphernalia. The penalty for the first offence is 10,000 Rupees, but if the behaviour is not corrected within one year, the penalty can increase to between three months and one year in prison, and a larger fine. The Bill includes an exception clause that recognises barriers to disclosure and unequal responsibility for HIV prevention within sexual relationships: “There shall be no duty to prevent transmission, particularly in the case of women, where there is a reasonable apprehension that the measures and precautions may result in violence, abandonment or actions which may have a severe negative effect on the physical or mental health and safety of the HIV-positive person, their children or someone who is close to them.” 19

References

  1. Worth H et al. Reckless Vectors: The Infecting ‘Other’ in AIDS Law. HIV Australia, 6 (4), Australian Federation of AIDS Organisations, Sydney, 2008
  2. Galletly CL and Dickson-Gomez J HIV sero-positive status disclosure to prospective sex partners and criminal laws that require it: perspectives of persons living with HIV. Int J STD AIDS 20 (9): 613-618, 2009
  3. Adam BD et al. Effects of the criminalization of HIV transmission in Cuerrier on men reporting unprotected sex with men. Canadian Journal of Law and Society 23(1-2):143-59, 2008
  4. Bourne A et al. Relative safety II: risk and unprotected anal intercourse among gay men with diagnosed HIV. London: Sigma Research, See www.sigmaresearch.org.uk/files/report2009d.pdf, 2009
  5. Human Rights Watch Hidden in the Mealie Meal: Gender-Based Abuses and Women’s HIV Treatment in Zambia. HRW, December 2007
  6. Australian Federation of AIDS Organisations Think again campaign. See www.thinkagain.com.au/index.htm, 2005
  7. Klitzman R and Bayer R Mortal Secrets: Truth and Lies in the Age of AIDS Johns Hopkins University Press, 2003, 2003
  8. Galletly CL and Pinkerton SD Conflicting messages: how criminal HIV disclosure laws undermine public health efforts to control the spread of HIV AIDS Behav. 10: 451-461, 2006
  9. IPPF, GNP+, ICW Verdict on a Virus: public health, human rights and criminal law. Available online at: www.ippf.org/en/Resources/Guides-toolkits/Verdict+on+a+virus.htm, 2008
  10. Burris S, Cameron E, Clayton M The criminalisation of HIV: time for an unambiguous rejection of the use of criminal law to regulate the sexual behavior of those with and at risk of HIV. Social Science Research Network, 2008
  11. Jürgens R et al. Ten Reasons to Oppose the Criminalization of HIV Exposure or Transmission. New York: Open Society Institute, 2008
  12. Athena Network 10 Reasons Why Criminalization of HIV Exposure or Transmission Harms Women. Available online at: www.gnpplus.net/images/stories/10_reasons_why_criminalisation_harms_women_smaller_file.pdf, 2009
  13. UNAIDS/UNDP Policy brief: criminalization of HIV transmission. Available online at: http://data.unaids.org/pub/%20BaseDocument/2008/20080731_jc1513_policy_%20criminalization_en.pdf, 2008
  14. WHO Gender Dimension of HIV Status Disclosure to Sexual Partners: Rates, Barriers and Outcomes. A Review Paper. Geneva, 2004
  15. Maman S et al. Women’s barriers to HIV-1 testing and disclosure: challenges for HIV-1 voluntary counseling and testing. AIDS Care 13 (5): 601, 2001
  16. Medley A et al. Rates, barriers and outcomes of HIV serostatus disclosure among women in developing countries: implications for prevention of mother-to-child transmission programmes. Bulletin of the World Health Organization, 82: 299-307, 2004
  17. UNAIDS/UNDP International Consultation on the Criminalization of HIV Transmission: Summary of main issues and conclusions. Geneva, 2008
  18. UNAIDS Opening up the HIV/AIDS epidemic: Guidance on encouraging beneficial disclosure, ethical partner counselling & appropriate use of HIV case-reporting. Geneva, 2000
  19. Lawyers Collective HIV/AIDS Unit Draft Law on HIV. Available online at: www.lawyerscollective.org/hiv-aids/draft-law, date accessed 30 July, 2010

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A writer and advocate on a range of HIV-related issues, Edwin has a particular specialism in HIV and the criminal law. He works with national and international HIV organisations, including the International AIDS Society, GNP+ and UNAIDS, as well having as a long association with NAM as a writer on this topic and as the former editor of HIV Treatment Update. To visit Edwin's blog and respond to posts click here.

This content was checked for accuracy at the time it was written. It may have been superseded by more recent developments. NAM recommends checking whether this is the most current information when making decisions that may affect your health.