ARCHIVED - Persons who fail to disclose their HIV/AIDS status: Conclusions reached by an Expert Working Group
The issue of non-disclosure of HIV/AIDS by persons infected with the virus is an issue that has not been satisfactorily addressed by public policy makers or the legal or medical communities. People who fail to disclose their HIV/AIDS status to sexual partners and those with whom they share drugs may transmit the disease as a result of the exchange of bodily fluids such as semen, blood, or vaginal fluid. In these and other circumstances, individuals do not have the opportunity to assess whether they wish to partake in particular risk activities with a person with HIV.
In September 2002 and February 2003, the Federal/Provincial/ Territorial Advisory Committee on HIV/AIDS organized a roundtable of experts from diverse backgrounds in the field of HIV/AIDS. They included physicians, psychologists, psychiatrists, public health officials, lawyers, and persons with HIV/AIDS who work in the community. The prime objective of the roundtable was to provide advice on the development a framework for the non-disclosure of HIV/AIDS for consideration by the provinces and territories. The experts met to 1) discuss the risk of HIV transmission associated with particular behaviours; 2) assess different strategies to address the issue of non-disclosure of HIV/AIDS; and 3) advise the Federal/Provincial/Territorial Advisory Committee on HIV/AIDS. The assessments and recommendations of the expert roundtable are summarized here for consideration by public health officials and other professionals and community workers in the provinces and territories.
The legal and ethical context relevant to non-disclosure of HIV/AIDS was considered by the expert roundtable. Legal and ethical considerations must inform and guide both policy and practice as they relate to non-disclosure of HIV/AIDS. This paper does not explore the legal and ethical issues relating to non-disclosure of HIV/AIDS, as these issues have been previously examined elsewhere(1). Public health officials are encouraged to consult additional sources for fuller examination of the legal and ethical context relating to this issue before adopting or adapting specific response models proposed herein.
Important components in a framework for persons who fail to disclose their HIV-positive status
Participants at the roundtable considered the following principles to be central to the development of a framework on the non-disclosure of HIV/AIDS:
- Prevention should be the primary objective. The framework should be based fundamentally on a public health rather than a criminal law approach.
"least intrusive, most effective"approach to intervention should be followed.
- The focus should be on the risk of transmission posed by particular behaviours. Behaviours should be placed in risk categories.
- The response to the failure to disclose should be proportional to the risk of the particular behaviour.
- Specific measures should not be prescribed but, rather, a list or menu ought to be provided to health care providers and public health officials to consider in the particular circumstances.
- If a person engages in risky behaviour and discloses his or her HIV status to a sexual or drug injection partner, the health care provider should nonetheless counsel the HIV-infected person to modify the risky conduct.
- Due process and Charter rights must be respected in interventions that are imposed by the state on the individual. This includes advance notice of the intervention, the right to counsel, timely reviews of decisions rendered, the right to a fair hearing, and the right to appeal decisions.
Some of the advantages of a public health over a criminal approach are as follows:
- Public health provides greater scope for prevention and more opportunities for surveillance of HIV.
- Confidentiality is maintained to a greater extent in a public health approach.
- There is less stigmatization of persons with HIV.
- HIV is less likely to be driven underground in a public health framework.
Quantifying the risk of HIV transmission associated with particular behaviours
The HIV/AIDS Epidemiology and Surveillance Division, Centre for Infectious Disease Prevention and Control, Population and Public Health Branch, Health Canada, prepared a document in 2003 on the risk of HIV transmission associated with particular behaviours. Some of the information contained in
"Overview of the Estimated Per-Act Probabilities of HIV Transmission" follows.
Blood Transfusion: Approximately 90% to 95% risk of transmission from transfusion of one unit of HIV-infected blood.
Injecting Drug Use: Estimated risk of 0.67% in the sharing of injection equipment.
Mother-to-Child Transmission: 20% to 25% estimated risk in the absence of antiretroviral treatment.
Needle Stick Injury: The average risk of HIV infection per single needle stick injury when the source is HIV-positive is 0.32%. This risk depends on several factors and, in general, is greater if the source patient has a higher viral load (e.g., immediately after HIV infection), if the injury is a deep one, and if there is accidental injection of material into the exposed person.
Sexual Exposure Through Heterosexual Penile-Vaginal Intercourse: Several studies have found a slightly higher range of probabilities of HIV transmission from men to women (range of 0.05% to 0.6%) than from women to men (range of 0.03% to 0.4%). However, these ranges are very broad. The probability of male-to-female heterosexual transmission has been best studied in the U.S. and Europe, where a smaller range of 0.08% to 0.14% has been found. In general, the risk of sexual transmission of HIV is greater with high viral load and the presence of another sexually transmitted disease (especially an ulcerative disease such as syphilis or genital herpes) in either the person exposed or the source person.
Sexual Exposure Through Male-to-Male Penile Anal Intercourse: Unprotected receptive anal intercourse involving an HIV-positive man, with ejaculation, is estimated to carry a per-act HIV transmission probability in the range of 0.5% to 3%. Relatively few studies have attempted to estimate this probability, and so it is less well understood.
Sexual Exposure Through Oral Intercourse: There is evidence that HIV transmission can occur through oral intercourse. Relatively few studies have attempted to estimate the transmission probability associated with insertive oral sex and so it is less well understood.
The Canadian AIDS Society model of levels of risk of HIV transmission
There was consensus that the
"HIV Transmission Guidelines for Assessing Risk" developed by the Canadian AIDS Society (CAS)(2) provide a good model for determining the levels of risk of HIV transmission associated with different behaviours. The risk levels are organized into the following four categories:
High Risk: The practices listed in this category present a potential for HIV transmission because they involve an exchange of body fluids such as semen, vaginal fluid, blood, or breast milk. A significant number of scientific studies have repeatedly associated these activities with HIV infection. Examples include insertive or receptive penile-anal or penile-vaginal intercourse without condom, sharing needles or syringes, and receptive insertion of shared sex toys.
Low Risk: The practices in this category carry a potential for HIV transmission because they involve an exchange of body fluids (semen, vaginal fluid, blood, breast milk), and a few reports of infection have been attributed to them. Examples include receptive fellatio without barrier, insertive cunnilingus without barrier, insertive or receptive penile-anal or penile-vaginal intercourse with barrier, and injection of a substance with a used needle and syringe that have been cleaned.
Negligible Risk: Although the practices in this category present the potential for HIV transmission because they involve an exchange of bodily fluids, the amounts, conditions, and media of exchange are such that the efficacy of HIV transmission appears to be greatly diminished. There are no confirmed reports of infection from these activities. Some examples include digital-anal intercourse, insertive or receptive fellatio/cunnilingus with barrier, and anilingus.
No Risk: None of the practices in this category have been proven to lead to transmission of HIV. There is no potential for HIV infection since none of the basic conditions for viral transmission is present. Such activities include kissing, body rubbing, and injection of a substance with a new needle and syringe.
The expert panel recommended that the new edition of the CAS Guidelines (released in 2004) quantify the levels of risk of different behaviours and that viral load be included as a consideration in HIV transmission. A further recommendation was that the CAS Guidelines contain a comprehensive discussion of HIV transmission from mother to child as well as the risks associated with HIV-positive children.
A framework to consider for the non-disclosure of HIV/AIDS - the Calgary Health Region model
The Calgary Health Region, in Alberta, has developed a model for the non-disclosure of HIV/AIDS. It is based on a graduated response to persons who refuse to disclose their HIV-positive status. Interventions progress from the least invasive, least restrictive responses, to more restrictive or coercive responses, including legal sanctions if necessary. Interventions are to occur in collaboration with mental health services, police services, social work, medical health services, and community services.
Some of the underlying principles of the Calgary Health Region model are as follows:
- The public health mandate is to protect people, not punish them.
- The most effective measures for controlling the spread of HIV within the population are participation in voluntary testing, education, and health promotion programs intended to reach persons or groups that are or may be at risk.
- Every effort is taken to arrange for the provision of necessary support or interventions for persons who may be unwilling or unable to protect themselves and others. Public health must strive to protect the needs of all groups in society, including those who may be marginalized.
- Public health seeks to work in partnership with other physicians, health care providers, and community groups to prevent difficult cases from arising and to manage difficult cases as they occur.
- Public health interventions must balance the rights of the individual with the duty to protect the public, where risk to public safety can sometimes override the rights of the individual.
- Medical officers have the duty and authority to balance individual rights and public risks pursuant to the Alberta Public Health Act(3).
- When voluntary measures are ineffective in the management of a difficult case, intervention should be within public health law unless there is obvious criminal behaviour. After all available supportive measures and interventions have failed, an order at the discretion of the Medical Officer of Health or a certificate and/or an order under the Alberta Public Health Act can be issued to better manage an unwilling/unable person.
- Unwarranted punitive measures taken against relatively few difficult cases could impair the effectiveness of voluntary programs for the many routine cases through increased stigmatization or fear of discrimination; this may lead to the increased spread of HIV.
Figure 1 shows a chart under development by the Calgary Health Region on the continuum of public health responses and interventions for the non-disclosure of HIV/AIDS. Following the chart is a description of the five levels of intervention for persons who are either unwilling or unable to disclose their HIV status.
- Public Health graduated approach in collaboration with mental health, social work, medical services, community care providers
- Interventions may occur at several levels concurrently
- Interventions are aimed at improving quality of life, reintegration into the community, and protecting the health of the public
- Notice of Form 2 Recalcitrant Patient or
- Verbal report received by MOH/DMOH/DN* concerning a client who is potentially unwilling or unable to prevent transmission of HIV
MOH/DMOH/DN documents complaint details, confirms HIV diagnosis, and determines whether client received appropriate counselling at time of diagnosis.
Client has not received appropriate counselling
HIV diagnosis confirmed and evidence of unwillingness or inability to protect others exists
- DN assesses knowledge, capacity to comply, and history in interview with client
- Refers for neurocognitive/psychiatric assessment as necessary
- Completes Assessment Form and submits to MOH or DMOH
Unable to prevent HIV transmission for
“internal” reasons such as organic mental illness or
“external” reasons such as coercion from other persons(4)
Intentionally engages in high-risk behaviours yet possesses the capacity and opportunity to prevent HIV transmission
No evidence of risk behaviour
Level 1: Counselling and Education
- counselling, education and monitoring
- referrals to community care and treatment agencies as required
- regular review with clients
- discussions of legal issues
- monthly report to MOH/DMOH
Level 2: Assistance in Accessing Services
- assistance to client in accessing housing, food, counselling, health care and treatment
- regular review with clients
- monthly report to MOH/DMOH
Level 3: Public Health Order
MOH/DMOH is aware that risk continues to exist and issues an Order under Section 29 of the Public Health Act.
Step 1. Order contains conditions of HIV disclosure, protection of partners, no sharing of needles or donation of blood/tissue, notification of residence, regular meeting with DN, compliance with medical treatment and counselling
Step 2. If unwilling/unable behaviours persist despite the Order and intervention, conditions to further limit the client?s behaviour are imposed, such as prohibiting activities that may put others at risk and restrictions on where the person may go.
- monitoring and case coordination with relevant agencies
- regular review with clients
- monthly report to MOH/DMOH
Level 4a: Apprehension Order**
(Can be used for clients after assessment has been completed, with or without Public Health Orders).
MOH/DMOH, aware that risk continues to exist, issues Form 3 Certificate of the Medical Officer of Health (Section 39 of the Act) for a peace officer to bring client to a specified facilty, such as a forensic unit in a hospital or secured community care facility. (This certificate must be issued within 72 hours of receipt of a Form 2, if the person is assessed as unwilling or unable.) MOH sends the information to the designated facility requesting health assessment and mental status examination of the client. The examination must be performed within 24 hours.
Level 4b: Isolation Order
Once the client is in the facility, two physicians can issue an Order for Isolation (Section 44 of the Act) to detain the client for treatment or stabilization. A physician shall re-examine the client at least once every 7 days to ascertain whether he or she may be released under a Release Order. Copies of isolation orders and their cancellation are sent to the Chief Medical Officer.
Level 5: Criminal
MOH/DMOH is aware that risk continues to exist, and despite substantial support offered by the Health Region the client continues to knowingly place self and others at risk. The client may be charged under the Public Health Act and/or the Criminal Code.
Description of the Five Levels of Intervention in the Calgary Health Region Model
Level 1: The first level of intervention involves public health counselling and education for the unwilling/unable person, e.g., on safer injection drug use and safer sex. It may be made mandatory for an individual to follow treatment by a physician and to use protection. The person is monitored by the DN and referred to community care and treatment agencies. The DN submits monthly reports to the MOH/DMOH.
Level 2: The second level involves assistance in accessing the necessary services that can help persons with HIV/AIDS comply with the Alberta Health Act. These include housing, food, counselling, health care, and substance abuse treatment. The DN conducts regular meetings with the unable/unwilling person and provides monthly reports to the MOH/DMOH.
Level 3, Step 1: This involves issuance of a Public Health Order when the MOH/DMOH knows that the person poses a risk of transmitting HIV to others and the assessment suggests that the person will continue to place others at risk. The Public Health Order specifies the conditions for HIV disclosure and the steps that must be taken to protect sexual partners. It prohibits sharing of drug paraphernalia, the donation of blood or tissue, and the use of illegal substances. The unwilling/unable person is required to identify his or her place of residence, meet regularly with the DN, and comply with the prescribed medical treatment and counselling. The order states that failure to comply may result in legal action pursuant to the Alberta Health Act and/or the Criminal Code. A copy of the public health order is sent to the provincial Health Association.
Determining whether the individual moves from Step 1 to Step 2 involves monitoring and case coordination with relevant agencies, such as the Alberta Mental Health Association, Calgary Police Services, addiction organizations, AIDS organizations, development disability organizations and women's groups.
Level 3, Step 2: Should the behaviour continue despite the Order issued under Step 1 and the public health interventions, a Step 2 public health order is issued with conditions to further restrict the person's behaviour. Individuals may be prohibited from frequenting particular areas and they may be required to follow a treatment regimen from a physician. The public health order may include prohibitions of particular sexual acts, donation of blood, and sharing of needles and syringes. The DN monitors the behaviour of the unwilling/unable person and provides case coordination/management with relevant agencies. The DN submits monthly reports to the MOH/DMOH. Should the HIV-positive individual continue to fail to protect him or herself and others, more stringent interventions, including legal action, can be initiated.
Level 4A, Apprehension Order: In this fourth level of intervention, the MOH/DMOH issues an Apprehension Order (Form 3 - Certificate) for a client assessed as unwilling or unable who is of immediate risk to others. These individuals may or may not have already had a Public Health Order issued against them. The MOH/DMOH, aware that the risk continues to exist, issues an order to authorize a peace officer to apprehend and bring the unwilling/unable person to a specified facility within 7 days of the issuance of the order. The MOH/DMOH sends information to a specified facility, such as a forensic unit in a hospital or a secure community care facility, and requests that a health assessment and mental status examination be conducted. This must be performed within 24 hours of the person's arrival at the facility.
Level 4B, Isolation Order: If, after apprehension, admission is required, an Isolation Order must be issued to detain the person in the facility for treatment or stabilization. This requires the assessment and the signature of two physicians. The patient must be re-examined by a physician at least once every 7 days to determine whether he or she may be released pursuant to an order under the Alberta Health Act. The MOH/DMOH/DN are actively involved in the process.
Level 5, Criminal Prosecution: The final level of public health intervention involves the criminal prosecution of an unwilling person who refuses to comply with measures to prevent the transmission of HIV. Legal intervention can occur concurrently with other levels of intervention. In a Level 5 intervention, the MOH/DMOH knows that the risk continues to exist and that, despite support by the health region, the person continues to knowingly place him or herself and others at risk. The health region and community partners can initiate proceedings under the Alberta Public Health Act and/or the Criminal Code. The person can be prosecuted for public nuisance under the Criminal Code, for which the maximum term of imprisonment is 2 years.
Recommendations from the Expert Panel
The Expert Panel endorsed the model proposed by the Calgary Health Region subject to the following recommendations.**
It was suggested that the CAS Guidelines for Assessing Risk of HIV Transmission (high risk, low risk, negligible risk and no risk) be used in the Calgary model. It was also recommended that the following principles be considered by the provinces and territories in the development of a framework for the non-disclosure of HIV/AIDS:
- Regardless of the risk level, if there is disclosure, the individual should not be subject to coercive public health interventions. However, counselling and education of the HIV- positive person should continue.
- If there is no risk and no disclosure of HIV status, there is no public health intervention other than counselling and education.
- If there is negligible risk and no disclosure, there is no public health intervention other than counselling and education.
- If there is high risk and no disclosure, there will be intervention in accordance with a public health model. Least intrusive measures should generally be resorted to before the imposition of coercive measures.
There are several factors important to the determination of the level of intervention:
- the risk level of the behaviour;
- the frequency of the risk behaviour;
- the vulnerability of persons at risk of HIV transmission, e.g., a child;
- the response of the HIV-positive person to the intervention;
- whether there is disclosure to the partner;
- the vulnerability of the HIV-positive person if there is disclosure, e.g., situations of domestic abuse, inmates in correctional facilities.
Disclosure is the ultimate goal even if the risk of HIV is negligible and there is no public health intervention.
The Expert Panel proposed that the due process rights of the HIV-positive person be clearly delineated. He or she should also be notified of the interventions that may be imposed. A patient advocate should be available both to represent the independent rights of the patient and to offer a supportive role, for example, when an Apprehension or Isolation Order is issued against the individual. There should be access to legal counsel. The protections specified in the Canadian Charter of Rights and Freedoms must be adhered to in cases of state intervention.
It was also recommended that there be an automatic right of appeal from an order imposed by public health on a person with HIV. This is because some people are not in a position to initiate the appeal procedure as, for example, persons who have mental illnesses or those who are not literate.
Another recommendation was the establishment of an external advisory committee that would operate from the inception to the conclusion of the process for the individual who has failed to disclose his or her HIV status. The committee would be composed of individuals from different disciplines, such as mental health, social work, medicine, the police, and community care providers.
* MOH = Medical Officer of Health; DMOH = Deputy Medical Officer of Health; DN = designated nurse ** A client may apply by an originating notice to a Judge of the Court of Queens Bench at any time for cancellation of a Section 39 certificate.
- See, for example, Canadian HIV/AIDS Legal Network. After Cuerrier: Canadian criminal law and the non-disclosure of HIV. Montreal, 1999. Comment on R.V. Williams (Supreme Court of Canada, 2003) and Legal and Ethical issues Raised by HIV/AIDS - Annotated Bibliography.
- Canadian AIDS Society. HIV transmission guidelines for assessing risk. 3rd ed. Ottawa, 1999.
- Alberta Public Health Act, 2000:37.
- Culver K. A draft concise policy guide to persons unwilling or unable to prevent HIV transmission: a legislative analysis and literature review. Ottawa: F/P/T Advisory Committee on AIDS, Health Canada, 2002.
Source: Prepared by Ronda Bessner, Legal and Policy Consultant (LLM, LLB, BCL, BA (Hons)) for the F/P/T Advisory Committee on HIV/AIDS.
* This article reflects the discussions of participants at the expert roundtable and may not represent the views of the Public Health Agency of Canada, the provincial or territorial governments, or the Federal/Provincial/Territorial Advisory Committee on HIV/AIDS.
N.B. The codes of ethics of various health professionals were also examined at the expert roundtable, for example, the Canadian Medical Association, the Canadian Nurses Association, and the Canadian Psychiatric Association. In addition, the discretion of health professionals to breach client/patient confidentiality to warn a third party of danger, as discussed in the Supreme Court of Canada in Smith v. Jones (1999), was examined. The Court states that three conditions must be satisfied: 1) a clear link to an identifiable person or group of persons; 2) risk of serious bodily harm or death; and 3) imminent danger. The Supreme Court of Canada case R. v. Cuerrier (1998) was also the subject of discussion. The issue in this case was whether non-disclosure of one's HIV status constitutes fraud thereby vitiating consent to sexual acts, subjecting a person with HIV to the possibility of an assault conviction under the Criminal Code. The Court held that for fraud to exist, three factors must be established: 1) a reasonable person must consider the behaviour to be dishonest (non-disclosure of one's HIV status may constitute such misconduct); 2) the dishonesty must result in significant risk of bodily harm (it appears from the reasoning in Cuerrier that protected sex with condoms may not be considered to pose a significant risk of harm) and; 3) the person would not have consented to engage in sexual acts had the HIV-positive person disclosed. It is noteworthy that the language of Cuerrier "significant risk of substantial harm", is incorporated in several codes of ethics of health professionals. Members of the expert panel commented that the codes of ethics provide little assistance in defining thresholds with respect to disclosure of patient information.
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