A significant proportion of HIV positive patients may not be disclosing their infection to NHS staff, when turning up for treatment at sexual health clinics. This is the finding suggested by preliminary research published online in the journal Sexually Transmitted Infections .
The British HIV Association (BHIVA) and the British Association for Sexual Health and HIV (BASHH) have produced updated guidance on HIV Transmission, the Law and the Work of the Clinical Team.
This guidance is aimed at those working in the field of HIV medicine, especially clinicians, but will also be of use to general practitioners and people living with HIV who want to understand the legal and medical basis for some of their care decisions.
The guidance begins with a clear statement against HIV criminalisation:
BHIVA and BASHH believe that this use of the law is unhelpful and potentially harmful to public health and support UNAIDS recommendations to limit the use of criminal law and the Oslo declaration view that a “non-punitive, non-criminal HIV prevention approach” is preferable.
Covering the law in England & Wales as well as Scotland, the document aims to provide information and guidance on managing issues related to sexual transmission of HIV based on current scientific evidence. It applies generic ethical and professional principles but with a greater emphasis on providing a confidential environment in which extremely sensitive matters can be frankly and fully discussed. This enables appropriate care of people with HIV and benefits public health by encouraging individuals to access testing and treatment. Within this framework this document sets out the roles and responsibilities of health care professionals when caring for individuals living with HIV.
Consistent with the recent BHIVA and the Expert Advisory Group on AIDS (EAGA) position statement on the use of antiretroviral therapy to reduce HIV transmission, the guidance notes:
In most situations the appropriate use of antiretroviral treatment is at least as effective as condoms in preventing sexual transmission of HIV. This is accepted by the [Crown Prosecution Service of England and Wales] and [Scottish Crown Office and Procurator Fiscal Service] so it is likely that evidence showing that the defendant was taking effective antiretroviral treatment at the time of the alleged transmission may be used to demonstrate that they were not reckless.
The guidance also clearly states that healthcare professionals “must be mindful of their duty not to work beyond their expertise in legal matters. For people with HIV, advice must include the routes of HIV transmission and how to prevent transmission, with information about safer sexual practices, the use of condoms and suppression of viral load. Advice must be given in a non-judgmental way.”
It also discusses issues of confidentiality, noting that “it is important when considering breaching confidentiality to weigh up all potential harms as there may be situations where disclosure of HIV status to protect a sexual partner results in considerable harm to an individual e.g. domestic violence. In situations where a health care professional believes that an HIV positive individual continues to put sexual contacts at risk their duties and subsequent action depend upon the type of contact.” See Figure 1 below.
The guidance also clearly states that “no information should be released to the police unless patient consent has been verified or there is a court order in place, except in very limited circumstances defined by the [General Medical Council].”
Importantly, it also notes that only individuals can make complainants to the police “and health care workers should remain impartial during discussions with patients.”
Finally, it provides clear advice to both help prevent transmission of HIV to sexual partners and to avoid prosecution for ‘reckless’ HIV transmission. Accordingly, people with HIV should do at least one of the following:
- Use a male or female condom fitted correctly along with water-based lubricant. Individuals doing this are unlikely to be seen as reckless for legal purposes. In the event of a condom split, it is advisable to disclose HIV status in order to support the partner’s decision whether or not to obtain post-exposure prophylaxis (PEPSE), which should be taken within 72 hours. The need for PEPSE will depend upon the type of sexual activity and the HIV viral load. An assessment of the risk should be undertaken by a clinician according to the BASHH PEPSE guidelines. Disclosure in these situations would suggest that the person with HIV was not reckless.
- Adhere to effective (suppressed viral load) antiretroviral medication. There is growing evidence of extremely low/minimal risk of transmission when plasma HIV is fully suppressed with the use of antiretroviral medication. In some situations an undetectable viral load can afford protection equivalent to or greater than that of condoms. A person with HIV is unlikely to be seen as reckless when relying on a suppressed viral load instead of condom use if they have been counselled accordingly by an HIV clinician or similar medical authority. It is recommended that this discussion is documented in the patient’s medical records.
In addition people with HIV should be advised that disclosure of HIV positive status to a partner before sex is important to support informed agreement around risk and safer sex behaviours. To avoid successful prosecution an individual who is not taking effective antiretroviral medication and does not use a condom must disclose their HIV status to sexual partners before sex takes place.
The entire guidance is reproduced below.
In the end, Bolden’s death is another tragic reminder of the constant fear and violence that so many people living with HIV/AIDS, especially black women, face on a daily basis in the United States — violence that is a direct consequence of the stigma and ignorance that HIV-negative folks create and perpetuate, yet are unwilling to own up to and admit is a problem. “Cicely Bolden’s murder is, for women, what Trayvon Martin is for the black men,” says Dixon Diallo. “Another man is going to get off lightly or completely for killing a woman for disclosing her status, and in no day or any country should that be acceptable.”
A recent study into gender, violence and HIV, illustrates that women who have disclosed their HIV status, are victimised, traumatised, and abused.
A significant number of sexually active U.S. teens who were born with HIV either didn’t know their own status when they started having sex, or they knew it but didn’t disclose it to their first sex partners, a new study says.
A large majority of gay men in the UK with HIV describe having one or more problems with sex, an analysis of a survey originally published in 2009 reveals. Amongst other problems, the analysis of the 2009 What do you need?
Last week’s devastating ruling of the Supreme Court of Canada was quick to dismiss evidence that that HIV criminalisation was damaging to public health.
“The only ‘evidence’ was studies presented by interveners suggesting that criminalization ‘probably’ acts as a deterrent to HIV testing,” wrote Chief Justice McLachlin. “The conclusions in these studies are tentative and the studies were not placed in evidence and not tested by cross-examination. They fail to provide an adequate basis to justify judicial reversal of the accepted place of the criminal law in this domain.”
And yet a few weeks earlier, a Canadian study was published that highlights exactly how the criminalisation of HIV non-disclosure is damaging public health. It may not be possible to prove that it deters testing, but it certainly creates all kinds of problems for people living with, and at risk of, HIV.
The lead author of the study, How criminalization is affecting people living with HIV in Ontario is Professor Barry D. Adam, University Professor of Sociology at the University of Windsor, Ontario, and Senior Scientist and Director of Prevention Research at the Ontario HIV Treatment Network, Canada.
Download the report here
Drawing on results from the Ontario HIV Treatment Network Cohort Study, the Positive Places Healthy Places Cohort Study, and in-depth interviews with 122 HIV-positive people, the report examines how people living with HIV in Ontario perceive the law and the legal obligation to disclose their HIV-positive status to prospective sexual partners, as well as their perceptions of the changing public climate affected by the increasing prominence of criminal discourses applied to HIV.
The report shows how the criminal justice system and media coverage have created a climate of anxiety (though not all feel equally affected), affected views on when disclosure is (and is not) necessary, shaped messages from health professionals, and affected disclosure practices. The legal and media framing of HIV as a responsibility to disclose potentially undermines HIV prevention messaging and places ever greater numbers of people living with HIV in jeopardy.
Most study participants believed that disclosure of HIV-positive status should not be a legal requirement if protected sex is practiced. There was no significant variation in opinion by age, gender, sexual orientation, or ethnicity, but more educated respondents showed less punitive views.
The study’s primary finding is that that HIV criminalisation has unfairly shifted the burden of proof so that people living with HIV are held to be guilty until proven innocent and that:
- People with HIV are now caught in a difficult he-said/(s)he-said situation of having to justify their actions;
- disgruntled partners now have a legal weapon to wield against them regardless of the facts; and
- the onus now falls on women whose male partners could ignore their wishes regarding safer sex.
In terms of general impact, many respondents reported a heightened sense of uncertainty, fear, or vulnerability, but others felt that the climate of acceptance is still better than in the early days of the epidemic, or that the prosecution of the high profile cases is justified and these people are giving all people with HIV a bad name.
To set the scene, in its introduction the report provides an extremely well-written exposition of why criminalisation HIV non-disclosure is problematic from a human rights, as well as a public health perspective. An edited version, below, provides you with a flavour of the insights.
The relationship between disclosure and HIV risk is complex at best… While some studies have found an association between disclosure and condom use, more have found no relationship…Disclosure poses a range of challenges in everyday social situations. The demand to disclose essentially requires HIV-positive people to place themselves in a situation to be rejected or stigmatized, a situation exacerbated in a climate of rising prosecution and media attention…
Ultimately reliance on disclosure makes sense as an HIV prevention measure only if both partners are certain of their serostatus, though epidemiologists point out that significant percentages of people who are HIV-positive do not know they are. In Canada, an estimated 26 percent of people infected with HIV are unaware of this fact. Indeed some researchers contend that transmission by those unaware of their infection accounts for a significant portion of new infections. Criminal prosecutions for non-disclosure encourage at-risk persons to rely on prospective sex partners to disclose their HIV status, if positive, and to assume that there is no or minimal risk in the absence of positive serostatus disclosure, evident in complainants’ testimony at trial in such cases. Serostatus disclosure laws may thus foster a false sense of security among HIV-negative persons who may default to forgoing safer sex unless notified of their partners’ HIV-positive status. Reliance on disclosure, then, is a shaky foundation for HIV avoidance. By absolving people of responsibility for practising safer sex, it may even increase vulnerability to infection.
Disclosure, then, is often challenging to accomplish in everyday life and the research evidence shows that disclosure is far from reliable as a method of avoiding HIV. The accumulation and consolidation of a body of legal doctrine that rests primarily on an obligation to disclose by those who know they are HIV-positive raises a number of problems in the pursuit of effective public policy in HIV prevention. There is, then, a need to test the presuppositions underlying the legal obligation to disclose as an HIV prevention strategy and to examine the real effects of criminalizing non-disclosure on people living with HIV.
Towards the end of the report, the authors discuss the impact of criminalisation of HIV non-disclosure on public health. Again an edited version, below, provides you with a flavour of the insights.
In Canada in recent years, the state has been shifting resources from social services to law enforcement… In HIV, the prosecutorial arm of the state has expanded while support for ASOs and for HIV prevention has become increasingly tenuous. The move on the part of some attorneys general to press for more punitive solutions to HIV prevention has many pitfalls and unintended consequences that amount, in the long run, to a public policy with poor prospects for meaningful reduction in HIV transmission combined with real damage to the lives and well-being of [people living with HIV]. Indeed obsessive focus on disclosure may create the conditions of accelerated transmission if people abandon safe sex in favour of disclosure as the preferred method of HIV avoidance…
Criminalization, whether minimal or expansive in punitive scope, has little potential to slow the advance of the HIV epidemic and has considerable potential to undermine prevention efforts currently under way….At the same time, increasing reliance on the criminal justice system to enforce a principle of universal disclosure of HIV-positive status, regardless of the likelihood of transmission, presses [people living with HIV] into an untenable double bind: they must place themselves into the risky position of heightening the possibility of rejection, stigmatization, and prosecution. Double binds can scarcely be the foundation for realistic public policy or consistent practice among [people living with HIV]. Only decriminalization and destigmatization would begin to create the conditions to make disclosure of sero-status safe. But perhaps more importantly, disclosure has been shown to be an unreliable method of reducing HIV transmission. Obscured by the criminalization debates is the fact that protected sex, especially in a situation where treatment has succeeded in attaining an undetectable viral load in the HIV-positive partner, continues to be a much more reliable method of avoiding HIV (as well as several other sexually transmitted infections).
It is interesting to note that the Supreme Court has, at least, recognised this last observation. However, the reality of the ruling is that it states very clearly that disclosure alone is enough to negate criminal liability (notwithstanding difficulties of proving that this occurred). It also very worringly undermines safer sex messaging by stating that condoms alone (or low viral load alone) are not ‘safe’ enough.
The study concludes with the following recommendations:
- Among police and prosecutors to employ consistent evidence-informed principles in the laying of charges (i.e. by developing prosecutorial and police guidelines)
- Among journalists to employ a rigorous decision-making matrix that strictly minimizes the publication of the identity of people living with HIV, and
- In public health and AIDS service organisations to develop a consistent counseling policy that does not mistake universal disclosure for prevention but rather focuses on how best to engage the sexual cultures of at risk populations to advance safer sex practice.
By Scott Burris The concept of “overcriminalization” is gaining traction across the political spectrum. The Heritage Foundation, which has a website devoted to the phenomenon, defines it as “the trend in America – and particularly in Congress – to use the criminal law to ‘solve’ every problem, punish every mistake (instead of making proper use of civil penalties), and coerce Americans into conforming their behavior to satisfy social engineering objectives.”
Researchers at the Medical College of Wisconsin (MCW) surveyed HIV-infected persons in New Jersey between March 22, 2010 and October 6, 2010 on the New Jersey law that requires HIV-positive individuals to disclose their status to sexual partners. Carol Galletly, J.D.
World leading scientists and medical practitioners joined legal experts and civil society representatives to discuss the scientific, medical, legal and human rights aspects of the criminalization of HIV non-disclosure, exposure and transmission. The meeting, organized by UNAIDS, took place in Geneva from 31 August to 2 September.