Prisoners

http://www.aidslaw.ca/

Current Epidemiology

It is difficult to provide a comprehensive picture of the HIV epidemic among prisoners in federal and provincial penitentiaries in Canada. There have been a number of studies of prisoners in particular institutions or in certain regions, but one must be cautious in generalizing from one institution or region to another. Nevertheless, the information that is available is cause for grave concern:

• In November 1996, the Correctional Service of Canada (CSC) reported that as of September 1996, 128 inmates out of 14,000 were known to be HIV-positive. This represented an increase of around 45 percent from the number of inmates who were known to be HIV-positive in April 1994.²⁸²

• CSC estimates that the prevalence of HIV infection among federal inmates is 10 times higher than that in the general population.²⁸³

• Two comprehensive studies of inmates entering provincial prisons found an HIV prevalence of about one percent.²⁸⁴ At the time, HIV prevalence in the general population was estimated to be 0.15 percent.

• Studies conducted in various prisons between 1988 and 1994 found HIV prevalence ranging from a low of zero percent (among young offenders) to a high of 9.8 percent (among women inmates).²⁸⁵ The prevalence of HIV infection is considerably higher among inmates with a history of injection drug use, ranging from zero percent (among young offenders) to 16.5 percent (among women inmates).²⁸⁶

• A 1995 survey of 4285 male inmates in federal penitentiaries found that 11 percent reported having injected drugs since coming to their current institution, 6 percent reported having had sex with another inmate since coming to their current institution, 45 percent reported having had a tattoo done in prison, and 17 percent reported having had their skin pierced in prison.²⁸⁷ Of those who had injected since coming to their institution, 17 percent reported that the equipment they used was not clean, and 27 percent did not know if the equipment was clean.²⁸⁸ Of those who had had sex since coming to their institution, 67 percent had not used a condom.²⁸⁹

• A 1995 survey of 39 randomly selected inmates in provincial and federal institutions in Ontario found that 28 percent (11 of 39) reported injecting in prison since 1985 and that 5 percent (2 of 39) reported injecting in prison during the past year. Nearly one-quarter of those who had ever injected drugs said that they first injected in prison.²⁹⁰ When asked about sexual activity in the past year, almost three-quarters reported engaging in sexual activity. Of these, 47 percent reported anal and/or vaginal intercourse, and none reported using a condom.²⁹¹

• HIV infection among injection drug users attending a needle exchange program in Québec City has been associated with a history of incarceration,²⁹² and HIV infection among male inmates at the Québec Detention Centre has been associated with having injected during incarceration.²⁹³

Patterns of Stigma and Discrimination

Prisoners are affected not only by stigma and discrimination related to HIV/AIDS, same-sex sexual activity, and drug use, but also by stigma and discrimination related to a criminal record and incarceration, and as well by discrimination based on gender, class, and race.

Societal Attitudes

With regard to attitudes toward prisoners at the societal level, the emphasis is often on protecting the public from prisoners to the exclusion of concern about the rights and well-being of prisoners. Such attitudes may be expressed most crudely in sentiments about "locking them up and throwing away the key." They may be reflected in opinions that prisoners are receiving too many benefits and too few penalties. They can be implicit in discussion of problems with the correctional system that place most or all of the blame on the prisoner, without considering the relationship between prisoners and the correctional system or between the correctional system and society.

Attitudes of this sort have an impact on the lives of prisoners. Politicians are hesitant to initiate controversial programs such as needle exchange in prisons, despite their potential to protect prisoners from HIV infection, because the public could react negatively both to supplying prisoners with equipment to inject drugs and to the admission that drugs are available in prisons. Prison administrations and prison staff may view all aspects of inmates' lives through the lens of safety and security, without giving due consideration to such things as inmates' right to confidentiality of medical information or right to health and health care.

Programmatic Discrimination

At the programmatic level, prisoners are discriminated against whenever they are denied a standard of public health and health care comparable to that available in the community. The World Health Organization Guidelines on HIV Infection and AIDS in Prison, revised in 1993,²⁹⁴ state that:

• all prisoners have the right to receive health care, including preventive measures, equivalent to that available in the community without discrimination, in particular with respect to their legal status or nationality;

• preventive measures for HIV/AIDS in prisons should be complementary and compatible with those in the community, and should be based on risk behaviours actually occurring in prisons, notably needle sharing among injecting drug users and unprotected sexual intercourse;

• prison administrations have a responsibility to define and put in place policies and practices that will create a safer environment and diminish the risk of transmission of HIV to prisoners and staff alike.²⁹⁵

Failure to provide accessible HIV testing, to protect the confidentiality of prisoners with HIV/AIDS, to provide a standard of HIV/AIDS care equal to that in the community, to provide a range of drug treatment programs comparable to those available in the community, to introduce measures that reduce the harms of injecting drugs (such as provision of bleach and sterile syringes), to make condoms and dental dams easily and discreetly available to prisoners, to provide education and information about HIV/AIDS, safer sex, and ways to reduce the harms of drug use - failure in undertaking any of these programs would constitute discrimination in terms of the WHO Guidelines. In Canada, this has been emphasized in both the 1994 Report of the Expert Committee on AIDS and Prisons (ECAP Report)²⁹⁶ and in the 1996 Final Report prepared as part of the HIV/AIDS Legal Network and the Canadian AIDS Society Joint Project on Legal and Ethical Issues Raised by HIV/AIDS (Final Report).²⁹⁷ There are numerous examples of failures of this kind in Canada (discussed below, in the section on the impact of stigma and discrimination).

Personal Attitudes

At the personal level, attitudes about HIV/AIDS, about same-sex sexual activity, and about drug use can affect relations among prisoners as well as between prisoners and staff. A recent study of inmates in federal and provincial institutions in Ontario found that, for a third of the respondents, one of the strategies they use to protect themselves from HIV infection in prison is to avoid or scare off people with HIV/AIDS, or to avoid sharing food or utensils.²⁹⁸ The study also found that fear of being labeled gay by fellow inmates prevents men from asking for or picking up condoms.²⁹⁹ It is reported that inmates in a same-sex relationship often face the biggest barriers to accessing condoms or dental dams, because they are afraid that they will be discovered and separated in the institution.³⁰⁰

In prison, the stigmas associated with HIV/AIDS are compounded by confinement. For example, one inmate with HIV/AIDS, who was housed in the general population but whose HIV status was not known to others, decided not to access the canteen. It is customary to share food that is purchased there; otherwise one is accused of hoarding. This inmate feared that if he shared food and his HIV status later became known, there would be negative repercussions from other inmates because of their fears about getting HIV/AIDS, even if such fears had no basis in fact. On the other hand, if he did not share food, he would be accused of hoarding. Hence his decision simply to avoid the canteen.³⁰¹

Impact of Stigma and Discrimination

Vulnerability to Infection

Preventive measures for HIV/AIDS in prison should be complementary to and compatible with those in the community. Preventive measures should also be based on risk behaviours actually occurring in prison, notably needle sharing among injection drug users and unprotected sexual intercourse.³⁰²

The potential for prisoners to protect themselves from HIV infection is determined not only by their own attitudes and behaviours, but also by the availability of protective measures and the support that is provided for using those measures effectively. Currently, only certain protective measures - information, condoms, and bleach for sterilizing injecting and tattooing equipment - are available in Canadian federal prisons and in most but not all provincial prisons. Sterile needles and syringes and sterile tattooing and piercing equipment are not available. Methadone maintenance programs, which reduce the need to inject illicit drugs among those dependent on heroin, are available in some provincial prisons, particularly in British Columbia, and in federal institutions to prisoners who received methadone prior to entering prison, but are not yet offered to inmates who wish to begin treatment in prison.³⁰³ All of these means of preventing HIV infection are available in the community.

The 1995 survey of male inmates in federal institutions found that 46 percent thought that inmates are in more danger of contracting HIV in prison than in the community,³⁰⁴ and that 36 percent felt that they needed more help to protect themselves against HIV/AIDS in their institution.³⁰⁵ When asked what help they needed, 58 percent said more information, 32 percent said anonymous testing, 14 percent said condoms, 34 percent said bleach for sterilizing needles, 35 percent said bleach for sterilizing tattooing equipment, 30 percent said sterile needles and syringes, and 32 percent said sterile tattooing equipment. These percentages tended to be higher in maximum-security institutions.³⁰⁶

Failure to provide the tools and create the environment in which those tools can be used safely and effectively places inmates at greater risk of HIV infection. Studies in Canada and elsewhere have found that, while injection drug users inject less frequently in prison than in the community,³⁰⁷ the rate at which they share injecting equipment is far higher in prison than in the community and the methods they use to clean their equipment are often inadequate.³⁰⁷ The 1995 survey of male inmates in federal institutions found that, when asked what inmates typically use to clean their needles or works, respondents thought that 23 percent often or always used cold water, 50 percent often or always used bleach, 22 percent often or always used alcohol, and 30 percent often or always used other methods.³⁰⁹ Often the circumstances in which drugs are injected in prison militate against effective cleaning: inmates speak of urgency, secrecy, fear of being caught, the desire to get high at all costs, being too high to clean or care, being unprepared to clean their equipment, as barriers to safe injecting.³¹⁰ As one inmate remarked:

If they got the drugs and there is only one fit ... they are going to use that fit because they got the dope. And, they don't care who's going to use it after that. And who says after doing that one they are going to care about washing it or cleaning it.³¹¹

Similarly, in regard to the use of condoms when having sex, the 1995 survey of male inmates in federal institutions found that 90 percent of inmates thought that 8 percent or less of the population used condoms when having sex.³¹² Only 33 percent of those who had had sex reported that they had used a condom.³¹³ The reasons for this are numerous, but include fear of being labeled gay or being suspected of transporting contraband:³¹⁴

"Guys are not gonna ask for condoms for sex in their cells because they don't want a guard or anybody to know that they engage in gay or homosexual sex."³¹⁵

"The other thing of requesting condoms is that if they don't know you're engaging in homosexual sex, their immediate thought is, 'Okay, you're using it to transport drugs.'"³¹⁶

Clearly, failure to make condoms easily and discreetly accessible compounds these fears and contributes to lack of protection in sexual activity among inmates:

That there is access to condoms within the prison gives us some consolation, however, it is situated in plain view of the nursing staff, or whoever else might be on the other side of the one way glass. Anyone wanting the condoms must then worry about being seen by staff, and may opt not to use the protection in fear of being discriminated against.³¹⁷

Experience and research in the community has shown that no single prevention measure - condoms, bleach, sterile injecting equipment, methadone - is in and of itself sufficient to prevent the transmission of HIV or to reduce the harms of drug use.³¹⁸ What is required is an integrated set of tools and programs, adapted to the structure of prison life and to prison culture, that not only provide the means to protect oneself, but also a safe and supportive environment in which to use those means. Programs that combine, for example, bleach distribution with peer inmate education and staff education have been successful in Canada.³¹⁹ Similarly, inmate and staff education have been integral to the success of syringe exchange programs in prisons in Europe.³²⁰ The wider context of inmates' lives is also important, as researchers found in discussions with inmates in federal and provincial institutions in Ontario:

When asked about what they felt could be done to reduce injection drug use inside prison, inmates suggested more access to drug programs, access to more effective programs, access to more work and/or recreational programs, more connection with the outside, and increased self-esteem."³²¹

The recommendations of the 1996 Final Report provide direction on how to remove the disadvantages that prisoners confront in protecting themselves from HIV infection and preventing the transmission of HIV, so that, as the WHO Guidelines state, preventive measures for HIV/AIDS in Canadian prisons are complementary to and compatible with those in the community.

Breach of Confidentiality

Information on the health status and medical treatment of prisoners is confidential and should be recorded in files available only to health personnel.³²²

Information regarding HIV status may only be disclosed to prison managers if the health personnel consider, with due regard to medical ethics, that this is warranted to ensure the safety and well-being of prisoners and staff, applying to disclosure the same principles as those generally applied in the community.³²³

As the ECAP Report states, "[d]irectives of the Commissioner of the Correctional Service of Canada expressly state that offenders have the same rights to confidentiality of information obtained by a health-care professional as exist in the general community."³²⁴ However, as the Report observes,

Little goes on in prisons that is not almost immediately known by almost all inmates and staff, and it has been said that when an HIV-positive person is in prison, her or his health status is usually circulated among both correctional officers and inmates.³²⁵

The Report recommended that "procedures be reviewed in every federal correctional institution to ensure that the confidentiality of medical information is protected, in particular information regarding the HIV status of inmates."³²⁶

In evaluating CSC's response on this issue, the 1996 Final Report found that "many prison officials and staff continue to insist on a 'need to know' the HIV status of prisoners."³²⁷ This information can easily become widely known. There have been reports, for example, that in provincial prisons photographs of inmates in staff offices on the range have been marked by red dots or by the note "use universal precautions," effectively disclosing HIV status to inmates as well as staff.

Disclosure of HIV status has significant consequences for inmates within the confines of prison. Some prisoners with HIV/AIDS choose to enter into protective custody; others remain in the general population. Reasons for choosing protective custody include not only stigma, discrimination, and risks to safety due to HIV status, but also other stigma, discrimination, and risks to safety for other reasons, such as being identified as transgendered or as gay.³²⁸ Peer-based outreach, education, and support programs, incorporating face-to-face encounters with people with HIV/AIDS, are essential to creating a more supportive and accepting environment for prisoners with HIV/AIDS.³²⁹

In order to prevent unwarranted disclosure of HIV status, federal and provincial institutions should adopt the recommendations of the 1996 Final Report on confidentiality and disclosure of medical information, which call for clear definition of the circumstances under which HIV status may be disclosed, for model procedures to protect the confidentiality of medical information, and for education of staff on issues pertaining to HIV testing and confidentiality, including confidentiality of medical information, the absence of a "need to know" prisoners' HIV status, and the risk or absence of risk of transmission of HIV.³³⁰

Substandard Medical Care

At each stage of HIV-related illness, prisoners should receive appropriate medical and psychosocial treatment equivalent to that given to other members of the community.³³¹

Prisoners should have access to information on treatment options and the same right to refuse treatment as exists in the community.³³²

Prisoners should have the same access as people living in the community to clinical trials of treatments for all HIV/AIDS-related diseases.³³³

Prison medical services should collaborate with community health services to ensure medical and psychological follow-up of HIV-infected prisoners after their release if they so consent.³³⁴

Under the Corrections and Conditional Release Act, CSC is under an obligation to provide every inmate with "essential health care that conforms to professionally accepted standards."³³⁵ However, as Sébastien Brousseau of the Office des droit des détenu(e)s du Québec observed in his testimony before the Parliamentary Sub-Committee on HIV/AIDS:

In penitentiaries, the administrative authorities have broad discretionary powers to decide what is essential or not. Too often, essential care is defined as minimum care. The absence of exclusive and detailed legislative provisions on health care in penal institutions, accompanied by broad administrative authority, leaves the door open to abuse. Considering that Correctional Services of Canada discharges its obligation by providing only essential health care, we believe discrimination does exist since the general population can obtain much more than essential care in any hospital or neighbourhood clinic. While in prison, people with AIDS have difficulty gaining access to specialized care and experimental treatment. They have trouble seeing a doctor on a frequent and regular basis.³³⁶

The 1996 Final Report states:

Most prison health-care services do their best to provide inmates living with HIV or AIDS with optimal care, and often inmates are referred to outside specialists for HIV-specific diagnosis and treatments. However, on some occasions, the Project has heard from inmates that they were receiving care and treatment of significantly lower quality than that received before coming to prison, or before being referred to the particular institution at which they were currently staying.³³⁷

It also raises a number of specific concerns about the care of prisoners with HIV/AIDS:

(1) the increase in the number of sick inmates - prisons are not equipped to deal with inmates who require long-term, ongoing care and treatment; (2) the difficulty of obtaining narcotics routinely given for pain relief to patients on the outside - in prison, these narcotics are often denied even to those in severe pain; and (3) the difficulty of accessing investigational drugs or non-conventional therapies, although in its response to ECAP's Final Report CSC promised to facilitate inmates' access to specialized or experimental treatments.³³⁸

These concerns were reiterated in consultations for this Discussion Paper.³³⁹ If anything, the emergence of combinations of antiretroviral therapies as the standard of care has exacerbated the difference in treatment available to inmates compared to treatment available in the community. The regime that is stipulated for a particular combination of drugs - ingestion at specific intervals, with or without food - is not followed in prison, because it does not fit in with the prison routine. Prisoners routinely miss medications when they go to court, when they are transferred, or when they are released; contingency plans that are customary to ensure that inmates with tuberculosis or diabetes receive their medication are, apparently, not made for prisoners with HIV/AIDS. Given the need to adhere closely to drug regimens in order to avoid the development of drug resistance, these failures are cause for serious concern.

There are also continuing reports that prisoners with HIV/AIDS do not receive adequate medication for pain.³⁴⁰ Prisoners with HIV/AIDS have been summarily cut off from pain medication, without due process, on the grounds that they were hoarding drugs. The problems are compounded by attitudes toward drug users. Drug users typically require higher dosages of pain relief than non-users because of the tolerance that drug users develop to narcotics. Inmates requesting higher dosages of pain medication may be perceived as wanting to "get high" in prison. In the absence of pain medication, inmates may resort to illicit drugs to manage their pain.

Many of these failings were brought to light in a recent inquest into the care and treatment of Billy Bell, an inmate who died of AIDS-related causes at the Regional Hospital Unit of Kingston Penitentiary. At the inquest into Billy Bell's death,

a specialist from the HIV clinic at the Kingston General Hospital, Dr Sally Ford, testified about how the prison failed to provide Billy the quality care that her patients outside the prison receive. The prison pharmacy would run out of doses of AZT and Billy would miss his dose days at a time. Billy experienced difficulty accessing proper pain management medication, lack of compassion from staff, and dangerous delays in the diagnosis of AIDS-related illnesses. It was a chaplain, not the prison health staff, who suggested that his chronic migraine headaches might be caused by the deadly meningitis.³⁴¹

In addition, when Billy Bell was released to a halfway house in Toronto, six months before his death, no arrangements were made for his medical care. After hearing the evidence at the inquest, the coroner's jury recommended, among other things,

• that CSC "review and upgrade their palliative care approach" to meet "the principles and practices developed by the Canadian Palliative Care Association";

• that pain management be available to prisoners; and

• that proper pre-release planning be done.³⁴²

Again, the recommendations of the 1996 Final Report regarding the health care of prisoners with HIV/AIDS set out directions that would eliminate discrimination of this sort.

Failure in Palliative Care and Compassionate Release

If compatible with considerations of security and judicial procedures, prisoners with advanced AIDS should be granted compassionate early release, as far as possible, in order to facilitate contact with their families and friends and to allow them to face death with dignity and in freedom.³⁴³

The degrading way in which several prisoners with HIV/AIDS have died in Canadian penitentiaries exposes how societal attitudes, combined with programmatic failures, can result in a reprehensible violation of human dignity. On 30 January 1995, Pierre Gravel was found dead in a bathtub in a federal correctional facility in Montréal. A few days earlier he had been denied parole on humanitarian grounds because the National Parole Board believed that the security risk was too high.³⁴⁴ On 15 May 1996, Billy Bell died alone in his cell in the Regional Hospital Unit of the Kingston Penitentiary. A report on his death states:

Billy was terrified at the prospect of dying in prison. Despite his expressed wish that he not be left to die alone, and assurances to his family that the prison would contact them so that they could be by his side, Billy died alone in his cell. The circumstances so outraged one of the prison chaplains that he left a note on a colleague's door, stating "Billy Bell died tonight, like a dog in a back kennel." Another prison chaplain resigned over the treatment Billy received.³⁴⁵

Like Pierre Gravel, Billy Bell had recently been denied parole. The fact that both these inmates were refused parole so shortly before their death, coupled with the degrading way in which they died, calls into question the credibility of CSC's acceptance of the recommendation of the ECAP Report regarding the early release of inmates with progressive life-threatening diseases, including AIDS.³⁴⁶ Part of the difficulty is the weight given to security concerns - undue weight, in the judgement of external observers of decisions to date³⁴⁷ - in the National Parole Board's hearings of requests for parole on humanitarian grounds.

In evaluating CSC's record on compassionate release, the 1996 Final Report notes that ECAP's recommendation has been unevenly implemented, and comments:

Such examples of uneven implementation have been deplored not only by prisoners, but also by health-care staff, who have complained that CSC is not enforcing its own rules. It has been suggested that CSC release clear guidelines and enforceable national standards and that prison administrations be held accountable for their timely and consistent implementation.³⁴⁸

Likewise, at the inquest into Billy Bell's death, the attorney acting on behalf of Prisoners with HIV/AIDS Support Action Network suggested that "CSC implement a real compassionate release process, including criteria and application and appeal processes," and, further, "that compassionate release decisions be taken out of the hands of the National Parole Board [and] be heard by tribunals combining representation from medical experts, community members, and the [National Parole Board]."³⁴⁹ After hearing the evidence, the coroner's jury recommended that "CSC revise its Compassionate Release Program ... to increase the influence of the palliative care team in the Parole Board's decision-making process."³⁵⁰

Women

It's really hard having to go over my story with doctors, dentists, optometrists, gynecologists, therapists, emergency rooms, each nurse that comes on shift if you're in the hospital. Each one will ask: "How did you get it?" I usually respond: "Does it matter? I have it. That's all that's necessary for you to know." They always look at you sideways, or nonchalant, never straight in the eye. Be up-front with me. There should be no discrimination based on how you got it.³⁵¹

I felt dirty, I felt I was toxic and I deserved it. I still feel poisonous.³⁵²

With the amount of money I'm given for food, I'm not able to adequately feed three children and myself without some sacrifice of nutrition, usually for myself. And I'm given $20 a month for my nutritional needs and to supplement with vitamins costs $75 a month.³⁵³

Current Epidemiology

Health Canada reports that "Canadian women are increasingly becoming infected with HIV, especially those who use injection drugs and whose sexual partners are at increased risk for HIV."³⁵⁴

• The proportion of AIDS cases among women has increased from 6.2 percent of all AIDS cases before 1990 to 6.9 percent during 1990-95 and 10.6 percent in 1996.

• The proportion of AIDS cases among women attributed to injection drug use has increased dramatically from 6.5 percent before 1990 to 19.5 percent during 1990-95 and 25 percent in 1996.

• It is estimated that by the end of 1996, 4000 to 5000 women in Canada were living with HIV, out of an estimated total of 32,000 to 42,000 people with HIV.

• Women accounted for 19 percent of all HIV-positive test reports in 1995 that included information on gender. Injection drug use was a risk factor for 20 percent of these HIV-positive women.

• HIV prevalence studies among pregnant women in Canada indicate an average rate of HIV infection of about 3-4 per 10,000 women.

Stigma and Discrimination in the Context of the HIV/AIDS Epidemic

Vulnerability to Infection

Women are, in general, more vulnerable to HIV infection than men in heterosexual relations.³⁵⁵ The reasons for this are not only biological and epidemiological, but also socioeconomic, related to inequalities in the position and power of women and men. A woman's safety in sexual relations may be compromised by, for example, the norms that men (and her partner in particular) have about using condoms, the potential for violence or abuse in the relationship, and the extent to which the woman depends economically or socially on her partner. As Travers and Bennett observe:

Research indicates that men, and to a lesser extent women, generally have negative perceptions about condom use, and the negotiation of safe sex practices with male partners, particularly the use of condoms, is difficult for many women. A major reason for this difficulty is that women require the cooperation of men, and inequalities of power where one member is in a subordinate role compromise the negotiation process.³⁵⁶

Violence against women in our society contributes to risk of HIV infection among women. A 1984 study of child sexual abuse in Canada found that 53 percent of females and 31 percent of males had been victims of unwanted sexual acts and that 80 percent of these incidents occurred when they were children or adolescents.³⁵⁷ One half of Canadian women over the age of 16 report violence at the hand of an intimate partner.³⁵⁸ This has serious implications for women's risk of HIV infection. A history of sexual assault is associated with numerous behaviours that place women at greater risk of HIV infection;³⁵⁹ a recent study among HIV-positive women in British Columbia found that 45 percent had experienced sexual abuse as a child.³⁶⁰ Fear of violence will prevent women from negotiating safer sex with their partners. The effects of abuse - poor self-esteem, shame, isolation, fear of being abandoned - also keep women from seeking information and support about HIV prevention.³⁶¹

HIV Testing, Counselling, and Diagnosis

There are a number of ways in which practices of HIV testing and counselling among women are, on the one hand, influenced by stigma and discrimination or, on the other hand, fail to take stigma and discrimination into account. Women are adversely affected, first of all, by perceptions that only men who have sex with men, drug users, and sex workers are at risk of HIV infection. Such perceptions have prevented women from seeking HIV testing.³⁶² They have also led physicians not to offer HIV testing and counselling to women whom they do not perceive to be at risk for HIV infection.³⁶³ This was a common complaint in the consultations for this Discussion Paper. The outcome for women is serious. Bias due to perceptions of risk, along with failure to recognize symptoms of HIV disease in women, can result in delayed diagnosis and delayed treatment for women.³⁶⁴ On the other hand, when women seek HIV testing, they are often required to answer questions about drug use and sexual activity before they are given access to a test. Women find these inquiries stigmatizing and difficult to challenge, given differences in power and (frequently) gender between the woman and her health-care provider.³⁶⁵

Second, testing and counselling practices among women have been influenced by discrimination based on race and ethnic origin. A study of HIV testing experiences among women in Montréal found that 11 percent of the women were tested without their knowledge, and that a higher proportion of these women were of Haitian or African origin.³⁶⁶ As Hankins comments:

In a country where HIV testing is to be performed only under conditions of informed consent following a pre-test counselling session, the high proportion of women, and in particular of women of Haitian or African origin, tested without their knowledge must be considered alarming. Physicians and HIV testing services need to be reminded of the national guidelines against testing without consent and of the importance of obtaining fully informed consent.³⁶⁷

Third, testing and counselling among women has been closely associated with prenatal care. The issues of HIV infection, pregnancy, and preventing HIV transmission to the child are important to women, and, given the benefits of early detection for both the woman and her child, it should be standard practice to offer HIV testing to pregnant women.³⁶⁸ Nevertheless, to associate HIV testing only or primarily with prenatal care is discriminatory. It precludes the provision of HIV testing, diagnosis and care to women who are not considering or seeking to have a child, and ignores the value of HIV testing for a woman in her own right, apart from her decision to have a child.

Finally, the concern to prevent transmission of HIV from mother to child has led to policies or practices that depart from the norm of informed consent for HIV testing and autonomy in decisions about having a child. Various approaches have been taken in North America to HIV testing among pregnant women: counselling all pregnant women about HIV and offering them an HIV test (routine offer of testing); including HIV testing in the list of routine prenatal laboratory tests, with the proviso that the women may choose not to have the test (routine testing); and mandatory testing.³⁶⁹ A recent review of these approaches concluded:

Routine or mandatory testing is not justified. It is not the "least restrictive, least invasive, likely to be effective, reasonably available approach" because there is reason to believe that the vast majority of pregnant women will willingly undergo an HIV test when the risks and advantages of seeking such a test are fully explained to them: when properly informed and supported in their decision-making, pregnant women will do what is best for themselves and their babies without coercion. In addition, testing alone is not effective in achieving the goal of reduced HIV transmission from mother to child, and treatment cannot and should never be coerced. Any mandatory intervention, including testing and mandatory treatment, would enormously interfere with the autonomy rights of the child.³⁷⁰

It is important to recognize the potential implications that a positive result may have for a woman, both if she is pregnant and if she is not, and to give these implications due consideration in pre- and post-test counselling and support.³⁷¹ There is a risk that a woman may be rejected, abandoned, or assaulted by her partner when she discloses her HIV status.³⁷² These problems are compounded if her partner is her main source of income and support. Whether or not her partner is supportive, a woman and her partner face decisions about having a child. There are reports that women have been discouraged from having children, counselled to abort their child, and even sterilized - evidence of the risk of inappropriate and coercive interventions that are prejudicial to a woman's right to autonomy and informed choice.³⁷³ And if the woman already has children, there are all the considerations about the impact of the HIV diagnosis on her children.³⁷⁴

Research and Information on HIV Disease in Women

Historically, there has been a lack of research on HIV disease in women. An analysis of the literature on HIV/AIDS listed on Medline reveals that publications on women made up only 4.1 percent of the literature from 1985 to 1990 and 7.5 percent of the literature from 1990 to 1995.³⁷⁵ Sherr eloquently summarizes the injustice of this systemic discrimination:

Despite the fact that women have been infected from the start of the epidemic, the move to focus on women, include them in studies, consider treatment trials and even to track the natural history of HIV in women occurred late in the day. The inclusion of female-specific manifestations of HIV disease has also only recently been considered in the arena of AIDS-defining illness. This may have led to devastating effects on rights and financial support entitlements of women compared with men.³⁷⁶

In addition, there was a disproportionate emphasis on pregnancy in some of the earliest research on women.³⁷⁷ As a result, there are gaps in our understanding of the determinants of risk and infection among women, the manifestation and treatment of HIV disease in women, and the psychosocial and socioeconomic dimensions of prevention, care, treatment, and support among women with HIV/AIDS.³⁷⁸

Research specific to women in Canada is beginning to address these gaps, but barriers to research among women persist. Research protocols may not specifically require sufficient numbers of women to achieve statistical significance. Clinical trials may automatically exclude women who are pregnant or of child-bearing age without offering the woman and her physician an opportunity to deliberate on the potential risks of participating and come to a decision that respects the principles of non-maleficence, beneficence, and justice in clinical research. Research programs often do not accommodate the needs of women who are caregivers or on low income: visits are scheduled at times at which women cannot participate, no provision is made for child care, and transportation is not provided.

As the draft Tri-Council Code of Ethical Conduct for Research Involving Humans observes:

While some research is properly focused on particular populations that do not include or only include a very few women, in most studies women should be represented in proportion to their presence in the population affected by the research. In designing and implementing research projects, particular attention also should be paid to the need to include women of colour, women who are members of cultural or religious minorities, and women who are socially or otherwise disadvantaged.³⁷⁹

Achieving this goal will require addressing, in an intentional way, the barriers that prevent women from participating in research, including such practical concerns as scheduling, child care, transportation, and payment. Not to address those barriers in effect discriminates against many women who would otherwise benefit from participation in HIV/AIDS research.

Psychosocial and Socioeconomic Needs of Women with HIV/AIDS

A woman's experience of HIV disease is affected by her roles at home, at work, or in the community. Women in Canada generally earn less than men, are less likely to be in a position of power than men, enjoy fewer career opportunities than men, and receive fewer employment benefits than men.³⁸⁰ Women are less likely to be employed than men, and more likely to be working part-time.³⁸¹ Men are more likely than women to have access to employee benefits, specifically disability insurance, medical benefits, and dental benefits.³⁸² Women are twice as likely as men to describe their main activity as caring for a family and working, and half as likely to describe it as simply working for pay or profit.³⁸³ Eighty-five percent of single-parent families are headed by women.³⁸⁴ Women are more likely than men to have given informal care to family and friends and to have received informal care from family and friends. The chances that women had provided care increases as their income increases, whereas it does not for men.³⁸⁵

Given these patterns and inequalities in the roles and incomes of women and men, it is not surprising that the psychosocial and socioeconomic dimensions of HIV disease are different for women than men. Research has found that women experience more social support than men, but that at the same time they feel more stigma associated with HIV disease than men.³⁸⁶ It has been suggested that this is partly due to frequent associations of HIV infection among women with drug use and promiscuity, and partly due to women's closer contact with family and friends in their caregiving roles, which makes them more vulnerable to stigmatizing behaviour.³⁸⁷ Analyses of data gathered in the preparation of Ending the Isolation³⁸⁸ found that "women reported higher distress than men in terms of being discriminated against, feelings of isolation, anger, depression, self-blame and guilt, fear of dying and rejection by family or friends."³⁸⁹ More recent studies report similar findings.³⁹⁰

Women's role as caregivers and their overall lower income have a significant impact on their own care as people with HIV/AIDS. It has been found that women with HIV/AIDS "will usually place their health last after their children, spouse, and parents," and that women "are perceived as being able to take care of themselves and their families without other support."³⁹¹ Many women with HIV/AIDS have pressing financial needs, and the pressures are greater for women who are caring for children as well as themselves. In Montréal, for example, it was found that 63 percent of women involved in a needs assessment required some financial assistance; the percentage was highest among women of Haitian or African origin, who represented by far the majority of women with children.³⁹² In a recent survey of women with HIV/AIDS in British Columbia, 53 percent of the women were mothers, and 51 percent reported an average household income of less than $20,000.³⁹³ It is reported that women with low incomes and children are forced to choose between their HIV-related needs - drug treatments, nutritional supplements and complementary therapies - and the needs of their children, particularly at the end of the payment period for social assistance.³⁹⁴ In addition to financial assistance, support may be required for child care, housekeeping, and transportation. Failure to provide for these needs - financial and otherwise - in a way that takes sufficient account of women's roles as caregivers and their overall lower income in effect means that many women with HIV/AIDS do not have equal access to care and treatment.

Barriers to HIV Prevention and Care among Lesbians

As the Final Report on gay and lesbian legal issues and HIV/AIDS observes, "[d]iscriminatory attitudes, ignorance about homosexuality, a pathologizing approach to homosexual orientation, and the assumption that patients as a whole are heterosexual lead gay men and lesbians to use health services less or to fear using them."³⁹⁵ Commenting on lesbians in particular, Ramsay has said,

many lesbian health problems are the same as those of heterosexual women, our experience with the health care system is radically different. ... For the most part, lesbians must deal with health professionals who know very little about us and the realities of our lives, and who can be quite open about their contempt for us. This makes us feel powerless and vulnerable. ... The result is that many of us do not seek health care when we need it because we are afraid of being ignored, isolated, or abused.³⁹⁶

There is evidence that lesbians do not receive the information and care that they require in the context of the HIV/AIDS epidemic. An Australian study of the experiences of women with HIV/AIDS found, for example, that "a few of the lesbians interviewed indicated that their doctors were trying to convince them to 'admit' that they had unprotected sex with men, had worked as a sex worker or had shared needles."³⁹⁷ AIDS workers in Canada report that they receive calls from lesbians who believe that they are not at risk of HIV infection because they do not have sex with men. Research indicates that lesbians may be at risk of HIV infection from a range of behaviours, including sexual activity with women as well as men.³⁹⁸ Alienation from the health care system, coupled with misinformation among health-care providers, does little to reduce the vulnerability of lesbians to such risks.

Heterosexual Men

Current Epidemiology

Although the data on HIV infection among heterosexual men are limited, they suggest that heterosexual men continue to be at risk of HIV infection.³⁹⁹ Health Canada reports:

• As of 30 June 1997, there were 913 reported cases of AIDS among adult men in which HIV was thought to have been transmitted by heterosexual contact. Of these, 460 cases were among men originating from a country where the predominant means of transmission is heterosexual contact, and 453 cases were attributed to sexual contact with a person who is HIV-positive or at increased risk of HIV infection.⁴⁰⁰

• Between 1 November 1985 and 31 December 1994, there were 629 positive test reports in Canada among men originating from a country where the predominant means of transmission is heterosexual contact or among men whose exposure was attributed to sexual contact with a person who is HIV-positive or at increased of HIV infection.⁴⁰¹ However, positive test results do not provide information about HIV infection among people who have not been tested,⁴⁰² and it can be assumed that many heterosexual men have not been tested for HIV.

• A 1997 survey found that among adults aged 20 to 45, 8.4 percent of men reported having two or more sexual partners within the previous year. The survey also found that among men who reported having one or more non-regular partners in the last year, 27.7 percent did not use a condom the last time they had sexual intercourse with a non-regular partner.⁴⁰³

Stigma and Discrimination in the Context of the HIV/AIDS Epidemic

In the consultations for this Discussion Paper, two concerns emerged regarding stigma and discrimination as it relates to heterosexual men, beyond the common concerns that affect all people with HIV/AIDS. The first relates to HIV prevention, testing, diagnosis, and treatment among heterosexual men. The association of HIV/AIDS with "risk groups" has made heterosexual men, like others who are not readily identified with HIV/AIDS, invisible in the HIV epidemic. This can result in failure among health-care providers to recognize HIV-related symptoms among heterosexual men or offer HIV testing to heterosexual men, as discussed above.⁴⁰⁴ The result is delayed diagnosis and treatment. Prevailing attitudes that associate HIV/AIDS with "risk groups" can also lead heterosexual men to believe that they are not at risk of HIV infection, so that they do not take precautions that will prevent the transmission of HIV. And it contributes to an absence of prevention efforts among heterosexual men as well as difficulties in getting their attention. In short, a large portion of the population is neglected. This neglect has implications for the health not only of heterosexual men but also of their female partners. To take one example - prenatal care - one commentator observes:

Much of the attention is focused on the woman, with scant attention paid to her partner who may be infected, may possibly be the source of her infection, and who also has a key role to play in future planning for the baby. Fathers are so overlooked in the HIV area that they are rarely consulted, tested simultaneously or involved in any safe sex dialogue. This is an enormous shortcoming given that male to female transmission is more probable than female to male, and given that social support and the family nature of HIV infection are fundamental elements in coping with, and adjustment to, this life-threatening condition.⁴⁰⁵

A second concern raised by some heterosexual men relates to their visitation and custody rights in child custody disputes. In one case, a man reported that his spouse was claiming sole custody rights, on the grounds that he was unfit as a parent because of his HIV status. It was argued that at some point in the future he would be incapable of being a "proper parent" because of his illness - an argument that one would scarcely make with regard to children who are not the centre of a custody dispute, but who nevertheless have one parent with HIV/AIDS. Justice Michael Kirby has made some acute observations about the obligations of the judiciary in this regard:

Some of the most difficult decisions arise in the area of family law. Cases have been decided whereby a child was denied access to a father found to be HIV-positive. The basis of the decision, however was not any real risk to the child, but that it was "not unreasonable" for the child's mother to have concerns without the risk of infection from fatherly social contact. This was an irrational fear, and the judge should not have given effect to it. A better approach was suggested in another case, where a wise judge held that it was a more appropriate response to the risk of stigmatization to bring the child up in a way that assists him or her in coping with it, and not to shield the child from realities altogether.⁴⁰⁶

Children and Their Families

If my neighbors found out they could make us feel uncomfortable. They may not let my daughter play with their children. They may not want us in the swimming pool and hot tub. They might leave the pool when we went in. I've even thought if it became known we have HIV it might be hard to sell our home because people may say - that's where the AIDS family lived.⁴⁰⁷

I was upset by discrimination I experienced by a social agency who was providing assistance in child care during periods of illness. I was angry because my son was discriminated against because of me.⁴⁰⁸

People know [the] child's diagnosis. The parents at the nursery school wanted to boot her out of school. The nursery school was worried about community reaction. The school had an information meeting for parents. This meeting ended up being very public - media, radio and TV got involved. My sister was too scared to phone me. She was afraid she could get HIV. She has never come to see me since I adopted this child. We lost our best friends since they learned of the child's diagnosis. The parents at the school now become very involved. Suddenly parents want to volunteer in the class. One little boy in the class said: "My dad said I'm not supposed to play with [the child]. I'm not even supposed to sit beside her. My brother and sister no longer visit us.⁴⁰⁹

Current Epidemiology

Perinatal Transmission

Health Canada reports that, as of 30 June 1997, 78 percent (123 of 158) of AIDS cases among children had been attributed to perinatal transmission.⁴¹⁰ As Health Canada states:⁴¹¹

• Perinatal (or vertical) transmission of HIV is the transmission of HIV from an HIV-infected pregnant woman to her newborn child. Transmission can occur during gestation (in utero), during delivery, when the fetus makes contact with maternal blood and mucosa in the birth canal, and after delivery, through breastmilk.

• There are many factors that may influence transmission of infection from mother to infant, including maternal viral load, mode of delivery, timing of delivery after rupture of membranes, and length of time breastfeeding. In developed countries, such as Canada, where feeding supplements are readily available as safe alternatives to breast milk, an HIV-positive woman is recommended not to breastfeed her infant.

• Detecting HIV infection before or during pregnancy can reduce the likelihood of vertical transmission (from mother to infant) by up to 67 percent if the woman and her child are offered timely antiretroviral treatment.

• All pregnant women, and women considering becoming pregnant, should have access to prenatal care, which includes the offer of HIV testing as well as appropriate counselling and care.

As of 30 December 1995, 551 infants in Canada were known to have been perinatally exposed to HIV. Of these, 234 infants are confirmed as having been infected with HIV.⁴¹²

HIV-Affected Families

Families are affected by HIV in a variety of ways: one or both parents may be infected with HIV; one or more children may be infected with HIV; some or all children may not be infected ("affected children"); children of HIV-positive parents may be cared for by grandparents.

A recent study of families living with HIV/AIDS in Canada found that one-quarter of families had both parents living with HIV; more than one-third of families had a single parent living with HIV; nearly one-third of families had only the mother living with HIV; in nearly half of families two generations were infected with HIV; and the majority of children (68 percent) living with parents or grandmothers were not HIV-positive.⁴¹³ Of the participants in this study, 45 percent of the parents were currently married, 27 percent were single but living with a partner, and 20 percent were single and living without a partner.⁴¹⁴ The age of children in these families ranged from several months to 18 years.⁴¹⁵ Over half of the parents reported a family income of less than $20,000, and the great majority (87 percent) reported an annual income of $30,000 or less.⁴¹⁶

Stigma and Discrimination in the Context of the HIV/AIDS Epidemic

Disclosure and Secrecy

In the study discussed above, fear of discrimination, particularly as it affects children, was a concern for over one-third of the parents.⁴¹⁷ As the quotations at the beginning of this section show, one of the main reason parents decided to keep HIV status a secret was to protect their children from hurtful incidents or exclusion.⁴¹⁸

However, keeping HIV status a secret is complicated for families. Parents must consider not only what their children may know, but also what their own friends and relatives may know, what their children's friends may know, what the parents of their children's friends may know, what staff at daycare or school may know, and so on. The potential for inadvertent disclosure is ever-present. Family and friends may comment without intending any harm; young children may mention something without realizing what it means for others.

Mostly [I'm] worried about how people will treat them [the children]. I haven't told them about my diagnosis because I don't want them to take those words to school and daycare. I just don't think it's fair for my children to be judged and they probably will be, even though they're negative.⁴¹⁹

All this takes its toll. Almost half of the parents involved in the study of HIV-affected families were concerned with disclosure and secrecy.⁴²⁰ As one parent stated:

The whole issue of secrecy is always on my mind - what people would think and do [if they knew], explaining the medical condition to my older child, explaining HIV to the affected [infected] child, always thinking about who can be trusted, issues at school, confidentiality, feeling responsible even though I am aware of universal precautions.⁴²¹

Invariably, disclosure of HIV status - whether it is the parent or the child who is HIV-positive - has consequences for the whole family. This has implications not only for the social support of the family,⁴²² but also for advocacy and education among parents and families. As a social worker put it, "If a mother goes public about her HIV status on television, the child gets it the next day at school."⁴²³

Discrimination in Daycare Centres

There have been a number of incidents where the discovery of the HIV status of a child in a daycare centre has led to a crisis or to the expulsion of the child. The issue came to public attention in Québec in January 1994 when "Baby J" was expelled from a daycare centre once it became known that the medication she was required to take was AZT.⁴²⁴ A subsequent consideration of the issue by the Québec Human Rights Commission determined that excluding a child from daycare solely on the grounds of HIV status is a prohibited ground of discrimination based on handicap, since the risk of transmission of HIV in a daycare setting is almost nil.⁴²⁵ The Commission also recommended education of daycare staff and parents on bloodborne diseases and on the rights of children with bloodborne diseases, in order to avoid or lessen crises when a child's HIV status becomes known.⁴²⁶

Such education has been provided in Québec, and has increased the level of knowledge and improved the attitudes of staff and parents.⁴²⁷ Before the program, 73 percent of respondents thought that parents must notify the daycare worker if their child is HIV-positive, 39 percent thought that daycare administrators must inform parents of the presence of an HIV-positive child, 51 percent felt that a child with HIV represents a danger to other children in the daycare, and 45 percent stated that they would not allow their child to be in a group with an HIV-positive child. After the education program, respondents holding these views decreased to 12 percent, 3 percent, 12 percent, and 14 percent respectively. Nevertheless, it is reported that many daycare centres are still inhospitable to children with HIV.⁴²⁸

Discrimination at School

Families must be careful about what they disclose at school because of the stigma associated with HIV/AIDS and the potential for discrimination. When the child is HIV-positive, parents sometimes advise the principal of the school, who may also inform the school nurse or counsellor. A similar arrangement may be made when the parent is HIV-positive. Such arrangements appear to work well for some families, and can afford both parents and child the support they need:

My oldest child learned about our HIV status and was upset learning that I have the infection. My child didn't know how to deal with it. All he thought was my mom and dad are going to die. He started having temper tantrums. It was hard because I didn't know any mothers with HIV who had children. So I met with school staff and explained what was happening and asked for counselling. And now the counsellor will bring in the younger child and myself and spouse for counselling.⁴²⁹

When the parent is HIV-positive, the child may ask the parent to come to school to discuss this with the class, at a time when the child is ready. Often this has proved to be a good experience for parent, child, and the students in the class.⁴³⁰ But at the same time it demonstrates the obvious - that knowledge, understanding, and support cannot be taken for granted.

A 1987 survey of attitudes about HIV/AIDS among young people found that 55 to 77 percent of young people thought that students with HIV infection should be allowed to attend regular school classes, but fewer agreed that people with HIV/AIDS should be allowed to be teachers.⁴³¹ Even fewer thought that people with HIV/AIDS should be allowed to serve the public as waiters, chefs, or hair stylists, or to work in hospitals. The authors commented:

It would seem that the closer the potential for contact, the less tolerant young people become.⁴³²

Only 11 to 25 percent of young people stated that they could not befriend someone who has AIDS.⁴³³ At the same time, some youth believed that people with HIV/AIDS were getting what they deserved (7 to 16 percent) or thought that they should be quarantined (13 to 24 percent).⁴³⁴

Educational programs about sexuality and HIV/AIDS can change attitudes among young people. A recent evaluation of the grade 9 program Skills for Health Relationships found that students in the program became more compassionate toward people with HIV/AIDS.⁴³⁵

Youth

Current Epidemiology

Health Canada reports that, "[a]s the HIV epidemic evolves, more and more infections are occurring in young people."⁴³⁶ The estimated median age of infection has decreased from 29.6 years for the period between 1975 and 1984 to 24.5 years for the period between 1985 and 1990.

While information on HIV infection and risk behaviours among youth is incomplete, there are indications of high-risk behaviour among youth in general and among street youth and gay, lesbian, and bisexual youth in particular:

• A recent school survey in Nova Scotia found that approximately 61 percent of grade 12 students reported having sexual intercourse in the year prior to the survey, and that of these only 32 percent always used condoms.⁴³⁷

• A 1992 survey in western Canada found that 52 percent of 17-year-old women and 55 percent of 17-year-old men had had sexual intercourse, and that of these, 45 percent of the women and 57 percent of the men had used a condom the last time they had sexual intercourse.⁴³⁸

• The rate of infection in a cohort of gay and bisexual men in Vancouver between the ages of 18 and 30 was 3.1 percent as of December 1996, twice as high as the authors of the study expected.⁴³⁹ In this cohort, 11 percent reported unprotected receptive anal intercourse with a non-regular partner, and 19 percent reported unprotected insertive anal intercourse with a non-regular partner.⁴⁴⁰

• Recent studies of street youth indicate that 85 to 98 percent have had sexual intercourse. Over 60 percent had their first sexual intercourse before the age of 13.⁴⁴¹ Among street youth, sexual intercourse at a young age is predictive of increased numbers of partners.⁴⁴² Rates of STDs are much higher among street youth than among school dropouts living at home and among first-year college students, and increase in a linear fashion as number of partners increases.⁴⁴³

• In a study of street youth in Montréal, 2 percent of the study participants were found to be HIV-positive. Injection drug use and prostitution were important risk factors.⁴⁴⁴

Stigma and Discrimination in the Context of HIV/AIDS

Education about Sexuality and HIV/AIDS in Schools

Educational programs about sexuality and HIV/AIDS in schools necessarily involve, implicitly or explicitly, a consideration of morals, values, stigmas and taboos related to sexuality, sexual activity, and HIV/AIDS. Depending on their values and attitudes, students, teachers, parents, and school board members may object to an education program that does not give preference to abstaining from sexual relations outside of marriage, that provides information on safer sex (particularly condoms), or that presents same-sex relations and activity as having equal value as heterosexual relations and activity.

The Council of Ministers of Education in Canada has taken an active role in developing, implementing and evaluating educational programs about sexuality and HIV/AIDS. In the past five years, the Council, with the support of Health Canada, developed, implemented, and evaluated a demonstration grade 9 program entitled Skills for Healthy Relationships. An evaluation of the outcomes of the program found that students who participated in the program became more understanding and accepting of homosexuality and more compassionate toward people with HIV/AIDS than students in the comparison group. Students in the demonstration program also became more knowledgeable about HIV/AIDS and more ready to communicate about past sexual experiences, to refuse sex, and to communicate about using condoms. In addition, they were more able to obtain condoms, to purchase them without embarrassment, and to use them properly.⁴⁴⁵

Although public school curricula in Canada include education programs on sexuality, local school boards often have discretion over what components of the program they will implement, principals and teachers can influence the way in which the program is delivered, and parents may opt to withdraw their children from the program. As a result, the education that students receive may be affected in a number of ways:

• it may not include information on safer sex;

• it may not include components aimed at developing skills in making decisions about sexual activity and in using condoms;

• it may not include education about homosexuality as part of normal adolescent sexual development; and

• it may not include education about non-discrimination vis-à-vis gay men and lesbians.

The Council of Ministers of Education has commissioned a research study to assess the factors that contribute to or hinder effective implementation and delivery of sexuality education programs. The results of this study are expected to become available in 1998. They should assist in identifying what has enabled school boards and educators to deliver (or prevented them from delivering) comprehensive and effective sexuality and HIV/AIDS programs that include, in the range of options, information about safer sex, same-sex orientation, and non-discrimination.

Gay, Lesbian and Bisexual Youth

Young people who are attracted to others of the same sex grow up in a world in which, more often than not, all of the approved references and models are heterosexual. Consequently, as they discover their sexuality and develop their social identity, they do not enjoy an environment that permits them to explore openly their sexuality and their identity, to befriend easily peers of a similar sexual orientation, and to anticipate readily the support of family. On the contrary, they are likely to grow up in an environment where derogatory remarks about gay men and lesbians are common, where they keep same-sex desires a secret from peers and families, and - for a significant number of youth - where they themselves have experienced abuse and even violence.

Gay, lesbian, and bisexual youth, in other words, grow up in a world that discriminates against them at the societal, programmatic, and personal levels.⁴⁴⁶ At the societal level, stigma and discrimination are expressed in assumptions, norms, values, models, messages, laws, and institutions that are prevailingly heterosexual, that privilege heterosexuals, that deny the validity or the value of same-sex identity and sexuality, and that tolerate or foster abuse and violence against gay men, bisexuals and lesbians. At the programmatic level, stigma and discrimination are expressed in such things as lack of information about homosexuality and bisexuality, censorship of books dealing with same-sex issues, lack of supportive educational and counselling programming in schools, negative representations of homosexuality in religious education, inadequate protection from the police and the courts, and no recognition or inappropriate treatment from health and social services. At the personal level, stigma and discrimination are experienced in the attitudes, remarks and actions of peers, in silence about homosexuality within families, in negative reactions when coming out to family and peers, and in experiences of violence and abuse.

All of this takes its toll. As one review of the literature observes:

Gay youth are prone to feelings of poor self-esteem, negative self-image, negative identity, isolation, fears, anxiety, self-hatred, demoralization, inferiority and depression which can lead to serious psychological problems, alcohol and drug abuse, or suicide.⁴⁴⁷

Specifically, for gay and bisexual youth, the process of expressing their sexuality and coming out entails an increased risk of HIV infection. In their early sexual experiences, gay and bisexual youth frequently engage in unprotected sex with anonymous partners.⁴⁴⁸ Often the coming-out process is itself followed by a burst of sexual activity, usually without protection. A qualitative study involving 26 gay youth in Montréal found that all of those who had come out to their parents (15 youth) had receptive anal intercourse, mostly without a condom, just after telling their parents. The study also found that the number of sexual partners tended to increase after coming out, and that most of the youths who came out left the family home.⁴⁴⁹ With few resources and little work experience, youth who choose - or are forced - to leave home may end up living on the street, where prostitution and drug use increase the risks of HIV infection.⁴⁵⁰ It has been observed that gay youth are overrepresented among street youth in certain US cities,⁴⁵¹ and that street youth have a two to ten times higher prevalence of HIV disease than other samples of adolescents.⁴⁵²

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FOOTNOTES

²⁸² O Ingstrup, Commissioner, Correctional Service Canada, in testimony before the Parliamentary Sub-Committee on HIV/AIDS, House of Commons of Canada, 35th Parliament, 2nd Session, Meeting no. 12, 16 November 1996.

²⁸³ Ibid.

²⁸⁴ DA Rothon et al. Prevalence of HIV Infection in Provincial Prisons in British Columbia. Canadian Medical Association Journal 1994; 151(6): 781-787; LM Calzavara et al. Reducing Volunteer Bias: Using Left-Over Specimens to Estimate Rates of HIV Infection among Inmates in Ontario, Canada. AIDS 1995; 9(6): 631-637; LM Calzavara et al. The Prevalence of HIV-1 Infection among Inmates in Ontario, Canada. Canadian Journal of Public Health 1995; 86(5): 335-339.

²⁸⁵ Health Canada, supra, note 261 at 29.

²⁸⁶ Ibid.

²⁸⁷ Correctional Service Canada. 1995 National Inmate Survey: Final Report - Main Appendix. Ottawa: Correctional Research and Development, 1996, at 348, 368, 374, 376.

²⁸⁸ Ibid at 349.

²⁸⁹ Ibid at 369.

²⁹⁰ LM Calzavara et al. Understanding HIV-Related Risk Behaviour in Prisons: The Inmates' Perspective. Toronto: HIV Social, Behavioural and Epidemiological Studies Unit, Faculty of Medicine, University of Toronto, 1997, at 12.

²⁹¹ Ibid at 17.

²⁹² C Poulin et al. Prevalence and Incidence of HIV among Injecting Drug Users (IDU) Attending a Needle Exchange Program (NEP) in Québec City. 6th Annual Canadian Conference on HIV/AIDS Research, May 1997. Canadian Journal of Infectious Diseases 1997; 8(Suppl A): 27A. Abstract no. 218.

²⁹³ A Dufour et al. Prevalence and Risk Behaviours for HIV Infection among Inmates of a Provincial Prison in Quebec City. AIDS 1996; 10(9): 1009-1015 at 1012.

²⁹⁴ WHO. World Health Organization Guidelines on HIV Infection and AIDS in Prison. Geneva: WHO, 1993. The full text of the Guidelines can be found in the March 1998 reprint of Jürgens, supra, note 2, Appendix 5.

²⁹⁵ Jürgens, supra, note 2 at 88.

²⁹⁶ Expert Committee on AIDS and Prisons. HIV/AIDS in Prisons. Final Report. Summary Report and Recommendations. Background Materials. Ottawa: Minister of Supply and Services Canada, 3 vols, 1994.

²⁹⁷ Jürgens, supra, note 2.

²⁹⁸ Calzavara, supra, note 290 at 23, 26-27.

²⁹⁹ Ibid at 29.

³⁰⁰ Personal communication with R Lines, 3 February 1998.

³⁰¹ Ibid.

³⁰² WHO, supra, note 294 at 1 (Guideline 4).

³⁰³ R Jürgens. Methadone, But No Needle Exchange Pilot in Federal Prisons. Canadian HIV/AIDS Policy & Law Newsletter 1997/98; 3(4)/4(1): 26-27; DA Rothon. Methadone in Provincial Prisons in British Columbia. Canadian HIV/AIDS Policy & Law Newsletter 1997/98; 3(4)/4(1): 27-29.

³⁰⁴ Correctional Service Canada, supra, note 287 at 332.

³⁰⁵ Ibid at 323.

³⁰⁶ Ibid at 324-333.

³⁰⁷ Calzavara, supra, note 290 at 14; K Dolan et al. HIV Risk Behaviour of IDUs Before, During and After Imprisonment in New South Wales. Addiction Research 1996; 4(2): 151-160; A Taylor et al. Outbreak of HIV Infection in a Scottish Prison. British Medical Journal 1995; 310: 289-292; J Nelles, A Fuhrer. Drug and HIV Prevention at the Hindelbank Penitentiary. Abridged Report of the Evaluation Results. Berne: Swiss Federal Office of Public Health, 1995.

³⁰⁸ Taylor, supra, note 307; D Shewan et al. Behavioural Change Amongst Drug Injectors in Scottish Prisons. Social Science and Medicine 1994; 39(11): 1585-1586; D Shewan et al. Prison as a Modifier of Drug Using Behaviour. Addiction Research 1994; 2(2): 203-215.

³⁰⁹ Correctional Service Canada, supra, note 287 at 354-359.

³¹⁰ L Calzavara et al. Reducing HIV Transmission among IDUs in Prison: The Inmates' Perspective. Canadian Journal of Infectious Diseases 1995; 6(Suppl B): 36B. Abstract no. 404.

³¹¹ Calzavara et al, supra, note 290 at 14.

³¹² Correctional Service Canada, supra, note 287 at 366.

³¹³ Ibid at 369.

³¹⁴ Calzavara, supra, note 290 at 29.

³¹⁵ Ibid.

³¹⁶ Ibid.

³¹⁷ Jürgens, supra, note 2 at 20, citing Salisbury and Smith.

³¹⁸ See, eg, AA Gleghorn et al. Inadequate Bleach Contact Times During Syringe Cleaning Among Injection Drug Users. Journal of Acquired Immune Deficiency Syndromes 1994; 7(7): 767-772; Strathdee et al, supra, note 209; Van Ameijden et al, supra, note 210.

³¹⁹ TL Nichol. Bleach Kit Distribution Pilot Project in a Canadian Federal Institution. XI International Conference on AIDS, Vancouver, July 1996. Abstract no. We.D.356. For a detailed description of the project, see Jürgens, supra, note 2 at 9-12.

³²⁰ R Meyenberg et al. Infektionsprophylaxe im Niedersächsischen Justizvollzug:

Eröffnungsbericht zum Modellprojekt. Oldenburg: Bibliotheks- und Informationssystem

der Universität Oldenburg, 1996, at 79-83; J Jacob, H Stöver. Germany - Needle Exchange in Prisons in Lower Saxony: A Preliminary Review. Canadian HIV/AIDS Policy & Law Newsletter 1997; 3(2/3): 30-31. For an overview of needle exchange programs in European prisons, see Jürgens, supra, note 2 at 54-65.

³²¹ Calzavara et al, supra, note 290 at 4.

³²² WHO, supra, note 294 at 4 (Guideline 31).

³²³ Ibid (Guideline 32).

³²⁴ Supra, note 296 at 7.

³²⁵ Ibid.

³²⁶ Ibid.

³²⁷ Jürgens, supra, note 2 at 101.

³²⁸ Ibid.

³²⁹ R Lines, L Ferguson. A Peer Driven AIDS Outreach, Education and Support Program Targetting Prisoners. XI International Conference on AIDS, Vancouver, July 1996. Abstract no. We.D.350; C Ploem, A Toepell. Pilot Inmate AIDS Peer Education Project. XI International Conference on AIDS, Vancouver, July 1996. Abstract no. We.D.354. For more information on the latter, see Jürgens, supra, note 2 at 16-17.

³³⁰ Ibid at 102.

³³¹ WHO, supra, note 294 at 5 (Guideline 34).

³³² Ibid (Guideline 36).

³³³ Ibid (Guideline 38).

³³⁴ Ibid (Guideline 40).

³³⁵ Ingstrup, supra, note 282.

³³⁶ S Brousseau, Coordinator, Office des droits des détenu(e)s du Québec, in testimony before the Parliamentary Sub-Committee on HIV/AIDS, House of Commons of Canada, 35th Parliament, 2nd Session, Meeting no. 12, 16 November 1996.

³³⁷ Jürgens, supra, note 2 at 112-113.

³³⁸ Ibid at 113.

³³⁹ Lines, supra, note 300.

³⁴⁰ Ibid.

³⁴¹ R Lines. Death Exposes Treatment of Prisoners Living with HIV/AIDS. Canadian HIV/AIDS Policy & Law Newsletter 1997/98; 3(4)/4(1): 29-30 at 29.

³⁴² Ibid at 30.

³⁴³ WHO, supra, note 294 at 7 (Guideline 51).

³⁴⁴ J-P Fontaine Védrine, Psychologist, Office des droits des détenu(e)s du Québec, in testimony before the Parliamentary Sub-Committee on HIV/AIDS, House of Commons of Canada, 35th Parliament, 2nd Session, Meeting no. 12, 16 November 1996; see also J-C Bernheim, J Montreuil. AIDS, Prisons and Parole. Canadian HIV/AIDS Policy & Law Newsletter 1996; 2(2): 20-21.

³⁴⁵ Lines, supra, note 341 at 29.

³⁴⁶ Supra, note 296 at 29-30.

³⁴⁷ Fontaine Védrine, supra, note 344.

³⁴⁸ Jürgens, supra, note 2 at 21.

³⁴⁹ Lines, supra, note 341 at 30.

³⁵⁰ Ibid.

³⁵¹ Goldie et al, supra, note 65 at 92.

³⁵² Ibid at 82.

³⁵³ Ibid at 54.

³⁵⁴ Health Canada. HIV/AIDS Epi Update: HIV and AIDS among Women in Canada. Ottawa, November 1997.

³⁵⁵ L Sherr. Tomorrow's Era: Gender, Psychology and HIV Infection. In: L Sherr et al, eds, supra, note 74, 16-45 at 20-23.

³⁵⁶ M Travers, L Bennett. AIDS, Women and Power. In: Sherr et al, eds, supra, note 74, 64-77 at 68.

³⁵⁷ National Forum on Health. An Overview of Women's Health. In: Canada Health Action: Building on the Legacy. Vol. 2: Synthesis Reports and Issues Papers. Ottawa: The Forum, 1996, at 7.

³⁵⁸ Ibid.

³⁵⁹ AL Bedimo et al. History of Sexual Abuse Among HIV-Infected Women. International Journal of STD & AIDS 1997; 8(5): 332-335 at 334.

³⁶⁰ Kirkham & Lobb, supra, note 121.

³⁶¹ J Madsen. Double Jeopardy: Women, Violence and HIV. Vis-à-vis 1996; 13(3): 1, 3.

³⁶² LA Jackson et al. HIV-Positive Women Living in the Metropolitan Toronto Area: Their Experiences and Perceptions Related to HIV Testing. Canadian Journal of Public Health 1997; 88(1):18-22, at 20-21.

³⁶³ KA Phillips et al. HIV Counseling and Testing of Pregnant Women and Women of Childbearing Age by Primary Care Providers: Self-Reported Beliefs and Practices. Journal of Acquired Immune Deficiency Syndromes and Human Retrovirology 1997; 14(2): 174-178.

³⁶⁴ Ibid; Jackson et al, supra, note 362 at 22.

³⁶⁵ S Lawless et al. Dirty, Diseased and Undeserving: The Positioning of HIV Positive Women. Social Science and Medicine 1996; 43(9): 1371-1377 at 1373.

³⁶⁶ C Hankins. HIV Counselling and Testing Issues for Women - Testing Experiences of HIV+ Women, Montréal. In: Hankins & Hum, supra, note 257 at 17.

³⁶⁷ Ibid.

³⁶⁸ On the benefits of early detection of HIV, see N Haley. HIV Testing for Women - Timing/Reproductive Choices/Provincial and Other Recommendations. In: Hankins & Hum, supra, note 257 at 18-20.

³⁶⁹ Jürgens & Palles, supra, note 4 at 120-134.

³⁷⁰ Ibid at 133.

³⁷¹ For a summary of issues associated with pregnancy, HIV testing and counselling, the effects of a positive diagnosis, and decisions related to having a child, see Sherr, supra, note 355 at 25-27; DL Lamping, D Mercey. Health-Related Quality of Life in Women with HIV Infection. In: Sherr et al, supra, note 74, 78-98, at 81.

³⁷² KH Rothenberg, SJ Paskey. The Risk of Domestic Violence and Women with HIV Infection: Implications for Partner Notification, Public Policy, and the Law. American Journal of Public Health 1995; 85(11): 1569-1576, at 1570. Madsen, supra, note 361.

³⁷³ Lamping & Mercey, supra, note 371 at 81; Lawless et al, supra, note 365 at 1374; P Lester et al. The Consequences of a Positive Prenatal HIV Antibody Test for Women. Journal of Acquired Immune Deficiency Syndromes and Human Retrovirology 1995; 10(3): 341-349, at 343-344; Travers & Bennett, supra, note 356 at 72.

³⁷⁴ Goldie et al, supra, note 65 at 85, 93. These issues are discussed below in the section on children and families.

³⁷⁵ Sherr, supra, note 355 at 16-17.

³⁷⁶ Sherr, supra, note 35