[Recorded by Electronic Apparatus]
Tuesday, November 5, 1996
.1532 
[English]
The Chairman: Ladies and gentlemen, I would like to call this meeting to order under Standing Order 108(2). The order of the day is a study of poverty and discrimination because of HIV/AIDS. Today we have a number of witnesses.
Before we start, I want to tell you there will be votes in the House of Commons today at 5:30 p.m. or earlier, depending on the collapse of debate. We expect the bells to go at 5:30 p.m., but they could go earlier, and if they do, we get paid big money to go to vote, so we have to do that. I will ask you to keep that in mind when you're making your presentations. We could get cut short, and we have three sets of witnesses today.
Arn Schilder is a Pacific regional AIDS director.
Arn, are you going to start out and introduce who is here? I will start with you. When we're finished with all the witnesses, we'll have ten-minute rounds of questioning and then go to five-minute rounds.
Mr. Arn Schilder (British Columbia Persons with AIDS Society): To begin with, I would like to thank the chairperson and the HIV/AIDS subcommittee for providing me with this opportunity to speak and to illustrate how the virus searches out vulnerability in gay men.
There is nothing new about men being victimized by other men. What is new is our understanding of how sexual abuse of gay men specifically increases their vulnerability to HIV.
Definitions of abuse exist in science, public policy, and law. Sexual abuse of children is now recognized as a frequent occurrence in our society, and it severely damages the psychological well-being of the victims into adulthood. It is entirely a criminal act; thus it is an issue for justice. Sexual abuse is common to all HIV communities in Canada.
HIV disease is a disease of the vulnerable, especially in the presence of marginalization and poverty. To be vulnerable in the context of HIV and AIDS means to have little or no control over one's risk of infection or acquiring HIV, or, for those infected or affected by HIV, having little or no access to appropriate treatment, care, and support.
Vulnerability is the net result of the interplay among many factors, both personal - including biological - and societal. It can be increased by a range of cultural, demographic, legal, economic, and political factors. HIV vulnerability escalates with abuse, and for gay men this begins in childhood.
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For years AIDS work has been haunted by the acute understanding that our programs weren't working well for everybody. Our speculations for the reasons directed our discussion to the thread of dependency, control, and violence that has been stitched through the lives of persons with HIV disease. A recent literature review with Health Canada confirmed that little research and data existed on the subject. However, compelling evidence existed in the review to give powerful insights on where to look next. Much of the evidence that has accumulated since supports our anecdotal experiences and suspicions of abuse.
Sexual abuse of gay men is hidden deep within the gender of men. Little research existed outside the general body of literature for men until now. An underlying history of abuse has implications for all adult gay men and will impair their capacity to protect themselves from HIV. The damage of sexual abuse in adult life has all the characteristics of an invisible disability and is a crime that implies entitlement indemnification.
Sexual abuse can occur in the family or in the immediate community, and it will be compounded when incest occurs. Abuse cuts across all socio-economic groups. Most studies place the incidence of sexual abuse between 2% and 9% for men. The literature indicates that women suffer from a sexual abuse rate of 18% to 33%, and current research supports the higher end of this range. It is only recently that the literature has confirmed an aggregate rate of 33% of childhood sexual abuse for gay men in three separate cohorts. In another study 37% of gay and bisexual men report having been forced to have sex before the age of 19. Of this group, 90% reported sexual abuse beyond the forced sex.
What the rate is for HIV-positive gay men is a very big question. Allers and Benjack in 1991 reported a 65% incidence among their HIV-infected subjects.
In the context of these social realities the psychological and health issues for homosexuals are overwhelming. Our current epidemiological reality for HIV is sufficient to warrant a re-evaluation of our basic health programs to respond to the new epidemiological evidence.
Some men feel they are entitled to victimize a boy who does not fit the mould, especially in the context of gender and sexual conformities. The matter is buried in sexist and misogynist views embedded in our culture, which values male roles and qualities above those usually associated with women. Boys expressing the wrong culturally inscribed qualities provoke profound hostility and violence in some males. Further work indicates that cross-gender behaviour or subtle deviations from the boy stereotype will predetermine later homosexual expression and gay and sociocultural identity.
Damage of sexual abuse is more provocative for males because of the dominant stereotypes. However, for gay boys the damage is even more profound. Gay boys are more likely to be the targets because of obvious vulnerabilities and because they are more available to the perpetrators. Research does reveal that children who are in emotional turmoil, neglected, rejected, and poorly supervised are easily manipulated and abused. These young persons are emerging into adult life with the same patterns of vulnerability as previous generations of persons with HIV had.
In another study, 60% of a cohort of abused adolescents identified as gay or bisexual. Gay youth are more likely to end up on the street when parental abuse occurs, especially in the presence of physical abuse. This pattern makes them ``socially apart'' youth and leaves them to the perceived safety and unseen risks of the street. Adolescents who are sexually abused are ten times more likely to share needles. For teenagers who are homosexual, this is reflected in suicide, a rate of 30% for adolescents. Young gay men have a life expectancy from 8 to 20 years less than their heterosexual counterparts at age 20.
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It has been reported in one study that homosexually active adolescents are seven times more likely to have been raped as children than heterosexuals. Evidence also exists that 60% of the adolescents identified in screening in family practices as having histories of abuse were either bisexual or homosexual.
Our cultural stereotype of men makes recognition and reporting of abuse both difficult for homosexuals as adults or as children. This is exacerbated by the fact that the vast majority of sexual abuse of both women and gay men is perpetrated by men who are not pedophiles. Although sexual abuse of gay boys is entirely a homosexual behaviour, these perpetrating males identify as heterosexual in their sexual identity.
Sexual abuse of gay boys is not about gratification; it is about power, violence and control. This abuse distorts the senses of the survivor, removing the sensation of capacity, power and control.
Care of children with gender and sexual identities that fall outside the stereotype excludes them on the basis that they have no sexual identity. Prejudice acts to exclude vulnerable children from appropriate care and protection on the basis that departure from a stereotypic gender and sexual identity is a matter of inappropriate behaviour based on choice. This sustains an environment of neglect and invisibility that ensures sexual abuse will thrive.
Gay persons have struggled for generations to affirm the fact that confirmation of gender and sexual identity was not optional for them as children, and the literature no longer supports this concept of choice. It is safe to say that gay men, even as boys, have a self-image that is less than stereotypical.
The prevailing position of health care providers and legislators supports the myth that gay men's health issues are provided for in the general health care model for men. This is the illusion of inclusion, using gender identity and social identity to exclude the needs of gay men as adults or children in validating sexual identity as a determinant of health. We call this heterosexism.
Action must provoke a systemic reorientation of AIDS programs in justice, support, education and care to ensure it is useful to these vulnerable populations. The costs and damages of abuse should be factored into rational contemporary HIV policy.
Vulnerable communities have long endured the damage done in childhood to their adult populations without any recognition or support in ameliorating this damage. Sexual abuse results in tremendous psychic and emotional pain, and the unsupportive environment that it occurs in leaves no option for the expression of pain or a place to heal.
Research has confirmed that behavioural pathologies emerge as a consequence. These are: depression, compulsivity, re-victimization, and substance and alcohol use.
Positive gay men who are survivors, facing isolation, chronic depression, feelings of profound loss and hopelessness, and collapsing social support, will profoundly feel the impact on their bodies. HIV disease will progress twice as fast for those with a low socio-economic status.
In care and medical treatment, gay men who are survivors of abuse often have great difficulty participating in health care relationships. This is why routine medical work-ups for gay men must integrate issues of abuse. Indeed, a curriculum for care and medical management should be standardized for all homosexuals as adolescents, as adults, and as children.
Dominant paradigms and models must be less preoccupied with behaviours and move towards enablement and empowerment interventions, coupled with safer environments for vulnerable communities. The systemic violence of abuse in youth has a destructive effect on the health of adult communities.
Gay men are shamed by yet another stigma. The shame is not ours. All men do not share in the cycle of abuse. However, they must confront these primal behaviours amongst the perpetrating males, and this is where the shame belongs.
Abuse of homosexuals is pervasive behaviour, but it doesn't make it right or just. Accumulated evidence from clinical, social and behavioural sciences confirms the need for new models and paradigms for HIV. International best practice recommends shifting from interventions based on information and education to that of correcting social, cultural, economic, political, and human rights causes of HIV infection.
A decision is required at the political arena to instruct a revision in theory and practice, a bureaucratic approach that has the requisite ability to tap into technical expertise and produce innovations and counter the escalating nature of HIV vulnerability, meeting the needs of those most marginalized. Thus we have a better chance of containing the epidemic. The alternative is an annual maintenance problem that will continue to expand.
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Canada's HIV epidemics - I say that in the plural, epidemics - are unstable and unpredictable. They're exceeding our wildest forecasts. The fundamental challenge for policy and health is the relationship of human rights and HIV. Sexual abuse of gay men has become a human rights issue, requiring a sustained response by ethical leadership.
Thank you.
The Chairman: Thank you.
Dr. Gerald P. Mallon, I thought you were from the University of British Columbia, but I see you're from Columbia University. There's quite a difference. I believe you're next.
Dr. Gerald P. Mallon (Assistant Professor, Columbia University School of Social Work): Thank you very much for inviting me.
Because Canada has a long history of providing the quality of services unlike some of the services that we've begun to look at in the United States, I thought it might be helpful to talk about some of the errors we've made in processing the work we've done with HIV adolescents in the United States and contrast them a little bit for you.
Discrimination is a health care concern and a social concern. In the fight against AIDS, heterosexism and homophobia have been barriers to HIV prevention. In the United States, homophobia permeates social attitudes regarding sexuality and sexual behaviour. Due to the strong association with gay and bisexual men in the beginning of the AIDS epidemic, homophobia has had many negative effects: the inadequacy of HIV prevention efforts in the schools; the limiting of access for people with HIV and AIDS to quality treatment and care; the undermining of public health initiatives for HIV prevention and research appropriate to high-risk populations, both current and future.
The link between societal stigma and AIDS was established early in the epidemic, when AIDS was then labelled GRID, or gay-related immune deficiency. Only later when the virus was found to be in other populations, including women, was the name changed. With the proliferation of AIDS and HIV infection, the then President of the United States, Ronald Reagan, did not even utter the word AIDS until seven years into the epidemic, nor did he allocate sufficient funds to fight this preventable disease. During that period, violence toward gay men and lesbians increased. In such an atmosphere the gay and lesbian community, as well as the public health workers and researchers, have had to struggle for access for funds to fight this disease and to work to prevent HIV from spreading among our youth.
AIDS is a behaviour-based disease; however, it is caused by more than just the behaviours of people who engage in unprotected sex and needle sharing. It is also caused by the discriminatory behaviour of individuals and governments. As we know in the United States, gay youth, for example, are at high risk for HIV infection. Between July 1995 and June 1996 there were 5,201 cases of AIDS reported among men who have sex with men under the age of 25, as found by the Centers for Disease Control in Atlanta. Yet we still teach gay youth to be ashamed of who they are, instead of affirming them at a very vulnerable stage of their development.
In the United States we teach through our laws that lesbian and gay lovemaking is a criminal act in 23 states; that lesbian and gay relationships are unworthy of legal protection in all but 9 states; that the civil rights of gay men are also unworthy of protection; and that lesbians and gays are unfit for military service. As well, in most classrooms discussions of gay and lesbian issues, even on non-sexual issues, is forbidden. I'd like to add that also in child welfare systems, the topic of gay and lesbian youth is rarely if ever addressed.
To turn around the behaviours that lead to HIV infection we have to take a hard look at the societal prejudices that foster HIV infection. In our country we condemn gay promiscuity, but then tell gay and lesbian couples who desire to make their commitment to each other that they are somehow a threat to the family. The United States Congress added to the burden of the fight against AIDS when it voted overwhelmingly to prohibit the federal government from recognizing same-sex marriage. In essence, the lawmakers said to gay and lesbian communities that our stable, monogamous relationships between same-sex couples has no value in our country.
Society's devaluing of gay and lesbian relationships is an invitation to discrimination and violence. It also discourages stable relationships and safer sex.
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We also condemn IV drug use, but we prevent those who are addicted to substances from obtaining clean needles that could help them preserve their lives while they try to overcome their addictions.
We say we are against unfair discrimination and prejudice, but most teachers, child welfare professionals and youth service providers refuse to take the steps necessary to relieve the atmosphere of anti-gay bigotry that permeates many youth-serving agencies. When a lesbian, gay or bisexual youth protests, he or she is told that if they were quiet about who they were, they would not cause this disruption.
But the fact is that we do need disruptions. We need to disrupt the status quo that accepts ignorance about human sexuality. We need to challenge the morality of anti-gay bigotry instead of allowing such individuals to call all lesbians and gay men immoral.
In this AIDS crisis, the number one factor in helping any person - young or old, gay, lesbian, bisexual or heterosexual - take the necessary steps to avoid HIV in their lives is to give that person a sense that they have the potential for a bright and productive future. People have to be told that they have a future and a good chance at life. If they are not told that, how can they be persuaded to put on a condom, stop drinking or stop abusing substances?
Right now, we are telling most lesbians and gays that they'll be tolerated at some level, but that we will not support them in their commitment to their partner or in raising their children. They will not be entitled to the same benefits that a heterosexual person sees as his or her right. When their partner dies, his or her property will not automatically be passed along to them as it would if they were heterosexual. This form of discrimination sends a clear message to gay and lesbian youth that the future is going to be a lot more difficult for them simply because of who they love.
Until we address some of these underlying causes of the epidemic and the barriers to HIV prevention - this is 15 years into it - we cannot hope to get it under control. In some ways, it is easier to show compassion for someone with a disease such as AIDS, but we also need to show compassion for gay, lesbian and bisexual youth struggling with their sexual identity. They need our understanding, compassion and hope for a bright future. They need our help now before they become the next generation infected with HIV.
The Chairman: Thank you very much. Ms Steffanie Strathdee is next.
Dr. Steffanie Strathdee (Epidemiologist, British Columbia Centre for Excellence in HIV/AIDS): Good afternoon, Mr. Chairman. Thank you for extending this invitation to address the committee. I'd like to also thank and acknowledge the words of the previous speakers for putting these important issues into perspective.
The title of my presentation this afternoon is ``Social Determinants related to the risk of HIV
infection and Progression to AIDS''. In this brief presentation, I will acknowledge not only my own
research at the B.C. Centre for Excellence in HIV/AIDS, but also the work of my colleagues,Dr. Robert Hogg, Dr. Michael O'Shaughnessy, Dr. Julio Montaner, Dr. Martin Schechter, and
Dr. David Patrick from the B.C. Centre for Disease Control.
This research involves three different studies that were conducted in partnership with our local community partners and AIDS service organizations, representing a total of almost 2,000 study participants. Each study was partly funded by Health Canada. Without such funding, these critical studies bridging HIV/AIDS epidemiology and the social sciences could not have been undertaken.
In the first decade of the HIV epidemic, researchers focused on sexual and drug use behaviours that specifically and directly related to the risk of HIV infection. Now that we are well into the second decade, our attentions have turned to the reasons for these behaviours that represent avenues for change.
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Although there are a number of actual social factors that influence health, I will be speaking only about a few today due to time constraints. I will describe how poverty, unstable housing and a history of sexual abuse have created communities of vulnerable and marginalized people who take more risks and are in turn more likely to become infected with HIV due to vulnerability.
The high-risk populations I will focus on today include gay and bisexual men, especially young gay men, injection drug users, and those who are doubly affected because of multiple risks, such as individuals who are injection drug users and also gay or non-white, or women who are injection drug users who are also involved in the sex trade.
I'd like to point out that there are clearly other communities at risk for HIV in Canada, such as ethnocultural communities and aboriginal populations in particular. However, less information is available on factors influencing these groups at this time.
I will now discuss results from three studies conducted in British Columbia that have shed light on the relationship between social determinants and the risk of developing HIV and AIDS.
First, there's the Vancouver lymphadenopathy AIDS study, known as the VLAS. This is the largest and longest-running study of AIDS in Canada. It involves 1,000 gay men.
Second, the Vanguard project began in 1995 as an extension of the VLAS. Its objective is to monitor HIV incidence and risk behaviours in young gay men, who are most at risk for HIV infection and, like young people in general, may feel invincible to the real health threats of HIV.
Third, there's the Point project. This was a study conducted in 1995 in Vancouver to identify factors related to recent and ongoing HIV outbreaks in Vancouver's community of injection drug users.
I will now briefly summarize some of the findings of these three studies. One of the most important findings of the VLAS, which was published in the esteemed medical journal The Lancet, was the following:
- HIV-positive gay men with incomes less than the poverty level were twice as likely to die
within a 10 year period relative to gay men with higher incomes.
Through studies such as the VLAS, it has been shown that older gay men have adopted safer sex behaviours as a result of the HIV epidemic. However, this is largely not the case for young gay men, such as those who have participated in the Vanguard project. The latter study has recently shown that over half of young gay men reported having at least one episode of unprotected anal sex within the last year; 47% had a regular partner and 25% had a casual partner.
In an attempt to uncover why so many young gay men had unsafe sex despite high levels of awareness of HIV and AIDS, we studied risk-takers. We found the following. Young gay men with less than a high school education were nearly twice as likely to be risk-takers. Young gay men with a history of sexual abuse were twice as likely to be risk-takers. This finding supports the role of socio-economic status and abuse in creating a climate for vulnerability.
The finding that the consequences of sexual abuse are far-reaching attests to the personal and professional experience of Mr. Arn Schilder, who is chiefly responsible for the inclusion of such questions in our study.
Similar findings about the role of sexual abuse and subsequent HIV risk behaviours have been reported in San Francisco, Boston and London, to name a few. This suggests that a history of sexual abuse is one of the many missing pieces of the puzzle for which we have been searching. This may help to account for the fact that some gay men have an inability to adopt and negotiate safer sex practices.
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Striking similarities arose as a result of our study of HIV infection in injection drug users in Canada's poorest neighbour, the downtown east side of Vancouver. This study revealed that injection drug users with unstable housing were twice as likely to become infected with HIV.
We also studied why injection drug users continued to share dirty needles in a city that is home to North America's largest and most highly rated needle exchange. The following themes emerged.
Male injection drug users who were gay or bisexual were three times more likely to share needles.
Male and female injection drug users with a history of sexual abuse were three times more likely to share needles.
Female injection drug users with more symptoms of depression or who reported living with a drug-using partner were more likely to share needles.
In the face of what is now an explosive outbreak of HIV infection among injection drug users in Vancouver - this is part of our recent findings - one in four is infected. We are currently monitoring HIV infection rates and risk behaviours among 1,000 injection drug users to further examine these issues.
Taken together, these results suggest that social determinants influence both the risk of HIV infection and the speed with which HIV will progress to full-blown AIDS, since fully one-third of the young gay men in the Vanguard project and one-third of the male injection drug users in the Point project reported having been sexually abused, in addition to 75% of female injection drug users in that study who reported such abuse. Our findings suggest that sexual abuse counselling should be integrated into HIV prevention efforts.
Our finding that unstable housing increases the likelihood of HIV transmission suggests that improving the living conditions for persons at risk for HIV can have a direct effect on impact of risk.
This research shows how social factors such as poverty, unstable housing and a history of sexual abuse create layers of vulnerability, which influence sexual and drug-using behaviours. Society creates these social determinants and has both an opportunity and a responsibility to change them.
In present-day situations, where there is discrimination, stigma and a lack of will to create a climate for social change and empowerment, diseases like HIV/AIDS will continue to flourish and will continue to cost taxpayers billions of dollars. The country waits for the federal government to provide the necessary leadership, without which this epidemic will continue.
As you can see from this discussion, the research that I and many of my colleagues across Canada conduct will directly lead to reduced incidence and spread of this tragic disease. Taxpayers can expect to save $100,000 in direct medical costs for each HIV infection that is prevented. If we prevent 1,000 people from becoming infected each year - just three infections per day across this country - the federal and provincial governments can save $100 million in future medical costs that can go towards reducing the debt.
These figures alone do not motivate me. I am committed to performing this research because I believe it prevents suffering and saves lives. But in the absence of a renewed commitment to a national AIDS strategy, such research will effectively come to a halt after March 1998.
Perhaps my own personal story can put this into perspective for you. Born and raised in Canada, I have pursued a career in epidemiological research and disease prevention. I received my PhD from the University of Toronto with support from Health Canada, which is currently ongoing, and have been trained by some of the most eminent AIDS researchers in this country. This year, at the International Conference on AIDS in Vancouver, I was greatly honoured when my research was ranked first among 500 submissions from young researchers around the world by an international panel.
My training is a product of the first two phases of the national AIDS strategy. Sadly, Canada might not reap its benefits. This year my fellowship will end and there are no funds to renew it. In fact, this whole phase has been cancelled. In the absence of a renewed federal commitment, the research projects my colleagues and I work so hard on will grind to a halt.
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Meanwhile, the U.S. Congress has just approved a 7% increase in U.S. AIDS funds, including $2.1 billion per year to the National Institutes of Health and more than $500 million to the Centers for Disease Control. Many of my young colleagues and I have no choice but to seriously consider the research opportunities south of the border.
Not renewing the national AIDS strategy is a national tragedy. If our research is followed by appropriate action, perhaps some day we won't need a national AIDS strategy. Until that time, the future of HIV prevention, treatment and care absolutely depends on it.
Thank you for your attention.
The Chairman: Thank you very much.
At this point in time we'll go to our question round. We allow ten minutes for the Bloc Québécois, the Reform Party and the Liberal Party. If a member asks one question and you answer for nine minutes, you have, of course, used up their ten minutes.
We wish to start with our colleague from the Bloc.
[Translation]
Mr. Dubé.
Mr. Dubé (Lévis): I am a regular member of the Standing Committee on Health, though not of the Subcommittee on HIV/AIDS. My colleague, Mr. Ménard, would have liked to be here to hear the witnesses, but I'll ensure follow-up.
As members of the Health Committee, Mr. Szabo, Mr. Volpe and Ms Ur will no doubt, like me, see a similarity between your presentation and the studies we have done on children's health. The similarity stems from the fact that the determining factor is socioeconomic. You mentioned others, but that's the important one. When we talk about determining factors, we are talking about factors that may lead to someone becoming an HIV carrier.
You know there is a debate going on now - and one which will certainly continue - about the appropriateness of granting legal status to homosexual couples. It always boils down to a question of money. Have you measured the economic impact of granting the same benefits to homosexual couples? Few people have provided us with data on this question. We agree in principle, but those who are opposed, and that does not include me, always ask us what the economic impact of such a decision would be.
This is a financial argument, which seems pretty mundane when health is being discussed. But you yourself present the economic aspect as being a determining factor. So I would like to know your opinion on that.
[English]
The Chairman: Who wants to start?
Mr. Schilder: I'll respond.
I'm not an economist. However, I am a gay man, and I have now been through four relationships in my life. The isolation that occurs in terms of the economic reality of each individual in a relationship is profound in the sense that you can never really marry your resources and support each other with your resources in terms of strengthening the relationship.
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I'm talking about 20 years of my life. I'm 46, and I spent 20 years with 4 different men. In those 4 relationships we were independent creatures, operating as if we were in a business partnership.
I think it's a brilliant question. Nobody has really quantified what the impact will be on society and the individual in economic terms. I certainly will promote that kind of research, because I think it will support understanding of why such changes in policy are needed.
[Translation]
The Chairman: Mr. Dubé.
Mr. Dubé: Do we have ten minutes altogether or is each party allowed ten minutes?
[English]
The Chairman: You have ten minutes. You had only three.
[Translation]
Mr. Dubé: It is acknowledged that one of the major determinants is the socioeconomic factor, which goes beyond the jurisdiction of a department of health, whether federal or provincial. I won't venture onto that ground. My colleagues know me. I am going to concentrate on points more closely related to your concerns.
We have to have a very global view of the problem. We mustn't see AIDS only from the health point of view. To understand the phenomenon as a whole, we have to take a holistic approach. Do you agree with me?
[English]
Mr. Schilder: I would like to answer that one.
It's a cross-ministerial responsibility. It's not just a question of health. When you examine the issues of childhood sexual abuse and how that predisposes to vulnerability in gay men, the solutions are an issue for criminal justice, they are an issue for child health care, they are an issue for education. The national AIDS strategy cannot be an issue just for the Department of Health. It has to be a cross-ministerial responsibility for all departments within the cabinet.
[Translation]
Mr. Dubé: You also said that the length of a homosexual's life, if I understood correctly, was eight to twenty years shorter than that of the male population in general. Is this also true of lesbians?
[English]
Dr. Strathdee: That research is from the B.C. Centre for Excellence in HIV. My colleague
Dr. Bob Hogg did this exercise and was looking at the impact of HIV on the gay male population. So
no, it has not been conducted for lesbians at this time.
[Translation]
Mr. Dubé: In the early days, it's true, many thought that AIDS was a disease limited to homosexuals. You mentioned President Reagan, but he wasn't the only one who thought that. According to recent data, how many of those who are affected, that is, carriers or people who are HIV-positive, can now be identified as gay?
[English]
Mr. Schilder: I thought it was 80%.
Dr. Strathdee: That depends very much on what region we are speaking of. In many urban centres where there is a higher proportion of gay men, for example in the west end of Vancouver, in Montreal, in the city of Toronto, the HIV prevalence can become quite high. At this time, across the entire city of Toronto, say, 15% to 20% is the figure I have heard. But of course that is a reflection of here and now. It does not take into account those individuals who have already passed away from this disease.
[Translation]
Mr. Dubé: Mr. Chairman, I know that my colleagues from the other parties also have some brilliant questions to ask and I wouldn't want to rob them of the opportunity by asking mine.
[English]
The Chairman: Dr. Hill.
Mr. Hill (Macleod): Thank you for your presentations on an obviously heartfelt subject.
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Mr. Schilder, you've touched on an issue that is seldom discussed - sexual abuse in male children and the future that this sexual abuse generates. You said a couple of things that I found to be inconsistent, though. One was that the male abusers were not pedophiles. Could you explain that to me? To my mind, a male abuser to a child is a pedophile by definition. Did I understand you?
Mr. Schilder: That's correct, and that is obviously one of the most provocative things with this discussion, because you're talking about a taboo about male sexuality. You're talking about highly dysfunctional male sexuality, where sexuality is acted out in terms of violence control and power dynamics, and they'll generally victimize the weakest and most vulnerable. Yes, it is a homosexual act, but these men identify as heterosexual men. They marry and largely do live their lives as heterosexual men.
As a doctor, I'm sure you'll understand the differences between sexual identity and gender identity - let alone social identities and so forth - and the variables that they create. But the majority of sexual abuse of gay men and women predominantly occurs from heterosexually identifying men who are not pedophiles. If you examine the literature, it supports that. And several references have been provided for your edification.
Mr. Hill: You then are giving us two definitions of ``pedophiliac''.
Mr. Schilder: No, I'm not giving you a definition. I'm telling you about behaviours of some heterosexual men. A lot of heterosexual men have a real problem with this in terms of examining the issue, because they have to look inward at their own sexual, social and gender identity, and question the behaviours of other perpetrating males.
If you examine prison populations, those are largely heterosexual men, but they will act out homosexual behaviour in the absence of women. They will interpret in their minds that they're acting heterosexually, although it is entirely a homosexual act.
Mr. Hill: All right. Your comments are very provocative and seldom spoken. I admire you for speaking on these issues.
If I could slip to Dr. Mallon for a second, you said we will improve the course of HIV infection by affirming the behaviour that, in many instances, is actually directly linked to this behaviour. Is there a jurisdiction you can tell me about where that is done, where there has been an improvement in HIV infection? I think specifically of San Francisco, which has probably the most gay-friendly environment - if that term is not offensive. What's the HIV infection rate like there among youth? If that's not a good example, could you give me another jurisdiction so that this wouldn't be theoretical for me, but would be an actual...?
Dr. Mallon: Maybe I could give you an example from New York, which is where I'm from and which I'm more familiar with.
What I mean by providing an environment that is more affirming and therefore less hostile toward gay and lesbian young people is this. I think it is within the context of that hostility that young people begin to partake in unsafe behaviours, and it's also within the context of hostility that young people have no choice but to act unsafely by abusing substances and anesthetizing and such. I think that creating environments that are affirming for young people, like support groups or places for young gay and lesbian people to come together, would allow them to interact with one another.
In Toronto, there is an agency called Central Toronto Youth Services that works with some of the folks down there. They do some counselling and provide some kind of support group called Street Outreach Services. I think some of those kinds of programs can provide environments for young people to be able to deal with one another in a safe way.
I think a lot of the street kinds of outreach programs have been seeing a real increase in HIV infection among the young people they work with, because they've been on the streets and have not been in environments that really are caring or nurturing for them. I think that's what I was referring to in talking about providing an affirming environment.
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Mr. Hill: In terms of experience, are these environments too young to show a change in infection rates? I always look for not just theoretical considerations, but an actual process whereby you can say it's been done here, here are the results, this is effective.
Dr. Mallon: I think they're effective in decreasing risky behaviour, but I don't think it's possible to say whether or not they're entirely effective at this point in time. I think we see a decrease in infection when young people are in environments perceived as being nurturing and affirming as opposed to environments that are hostile, in which young people feel the need to anesthetize themselves.
I work in child welfare in New York. When we create environments for young gay and lesbian people that allow them to be and allow them to interact with other young people and adults who are like them, I think we see a decrease in a lot of risky behaviours. At this point, though, I don't think we've been able to quantitatively spell that out.
Mr. Hill: That will do. Thank you.
The Chairman: Mr. Volpe.
Mr. Volpe (Eglinton - Lawrence): Thank you very much. I found your presentation most interesting and provocative. It was provocative, because I'm going to take the bait. Some of my colleagues want to be polite, but I want to address some of the issues that raise questions for me.
First of all, I want to clarify one thing, because I think you ended off on a political note, Doctor. That political note would suggest that the Canadian government perhaps may have been doing something but is no longer committed to doing anything that would lead to disease identification, understanding and eradication. That's clearly not the case, because the current national AIDS strategy doesn't end until March 1998. We have at least a year and a half to go, and approximately 50% of the current funding over the course of the current year and next year is dedicated to research. It's also buttressed by additional funding by the Medical Research Council on the purely medical, scientific side of research. As well, you are probably aware that there are pharmaceutical companies that have been leveraged into conducting some research on the biomedical side in order to address the issues from the chemical requirements dealing with HIV/AIDS.
I just wanted to put that on the record, because there is a large lobby - and I compliment the people who raised that lobby - that would suggest there perhaps isn't anything out there. But such is not the case.
Dr. Strathdee: Just to make one comment, I would also like to acknowledge the contribution that the federal and provincial governments have made up to this point. I think the activists here in this room, my colleagues - both here and across Canada - and I want to know what will happen after that. One example is the national health research developmental program. It used to have separate AIDS funding but doesn't any longer. That is the program that I was talking about, and it has now been cancelled.
Mr. Volpe: It's out $2 million nationwide, and it hasn't been cancelled. And the AIDS strategy is still in place. It's scheduled to run out in March 1998, but that doesn't mean it will.
Dr. Strathdee: I hope not, for the sake of many thousands of people.
Mr. Volpe: I took your submission here in committee as a desire expressed to carry the message forward to the government.
Dr. Strathdee: Thank you, sir.
Mr. Volpe: I thought a couple of issues that were raised were really quite interesting. I'm not sure I want to engage in a long discussion, because I'm sure the presenters, who are much more knowledgeable on this than I am, will feel they are engaging in conversation with those who are ignorant, and I don't want to convey the impression that your legislators are in any way wanting.
I must return to a question raised by Dr. Hill. I have a difficult time understanding this concept of when a pedophile is not a pedophile. I really do.
.1625
Take me as an example of the typical citizen who would say of this discussion, listen, I want to understand this situation, and I want to be as sympathetic as I can possibly be towards all those who are sufferers. But if you're going to give me, as one of the causes, a situation that's going to cause me some confusion as to the perpetrator of what is obviously a very grievous situation, and then excuse that individual by saying, well, you know, it's someone who has some particular problems, that's very difficult for a typical Canadian to understand.
Am I off base?
Mr. Schilder: It's a very difficult thing to understand, because to be frank with you, most men don't separate the issue of their gender identity and their sexual identity. But say the abuse was not of an 8-year-old boy but of an 8-year-old girl; would that be a pedophile or heterosexual abuse?
Mr. Volpe: Well, I can answer your question. You're talking to a guy who had both an 8-year-old girl and an 8-year-old boy, and it would probably be impolitic of me to say what I would have done to anybody who had done anything to either. I make no distinction - none whatsoever. The safety of my child was first and foremost in my mind, and heaven forbid that anybody had done something to transgress that safety - I wouldn't like to speculate on what might have happened. I think that's typical of most fathers.
Dr. Strathdee: Perhaps the issue is more one of semantics; when we're talking about terminology, it's child abuse.
It should be recognized that we're not only speaking of child abuse, whether you want to label children under 12, under 14, under 16. In the Vanguard project, 50% of those young gay men who reported being sexually abused were abused over the age of 18. That was something of a surprise to me, but clearly there are other dynamics going on that need to be further explored. The fact that our research has been backed up across the globe and was profiled very clearly at the International Conference on AIDS this summer is a testament to that.
Mr. Volpe: I wanted to address two or perhaps three other issues, and they may appear disjointed. There has been some discussion about the context of hostility and the propensity amongst the young to take risks. As these positions were being forwarded, I tried to think back to when I was a teenager and wondered whether the word ``risk'' ever entered my vocabulary.
I hear social scientists using exactly the same rationale when speaking of young boys and girls today, irrespective of gender identification or sexual identification. These young people have a tendency to take risks because they feel themselves indestructible. What's different?
Mr. Schilder: When dealing with young gay men or gay boys, as I call them, society has a very difficult time realizing that children can be homosexual by confirmation very early. Indeed, I was a homosexual child at five - I knew I was - and my contemporaries knew that they were homosexual very early. People prefer to prescribe the concept of choice.
What you have in that instance is an already very vulnerable child who is available to be a target. Then you add the normal sorts of behaviour that any adolescents would have of invincibility, of being immune to any danger, to that equation. If that child has come through a round of sexual abuse, and we know sexual abuse in childhood especially before the age of 10 will lead to very destructive behaviours in the child in the adult life...
In fact, many of the vulnerable communities you are talking about have histories of these behavioural pathologies - depression, substance and alcohol abuse, patterns of victimization, sexual compulsivity - these things are all very predictable. However, when you're trying to explain that in a vulnerable child, who goes through the same growing experiences as they come through their adolescence...they have this additional burden that makes them twice as vulnerable. As children, many of them stick out like sore thumbs.
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Dr. Strathdee: I would like to make a direct comment on your question. I think for a woman having unprotected vaginal sex, or even unprotected anal sex, if she is engaging with a man she is likely to be at lower risk than gay men having unprotected anal sex, just on the basis that we have two different mixings of prevalence rates going on here. If we have the 15% to 20% prevalence rate in, say, Toronto's gay male population - and I'm just using that as an example, because I don't think anyone can pinpoint that number, sir - that situation will lead to a higher risk for an individual having unprotected anal sex just once. And that's what a young gay male is faced with.
The Chairman: Mr. Volpe, you have about thirty seconds.
Mr. Volpe: Okay, then I'll ask two questions, and I'm doing it in the context of trying to understand a little better.
You made much, Dr. Schilder, of the familial relationship that's denied homosexual and lesbian couples, but especially homosexual couples. I'm looking at the heterosexual community and I see a divorce rate that's somewhere around 50%, remarriages that obviously come encumbered with economic and financial situations. I see a lot of couples who live together and have the same kinds of difficulties, the financial difficulties you point to. I look at heterosexual unions that have a duration time not much different from the one you described personally. So I ask again, what's different?
Just before you answer, let me finish off one last thing. The infection rate is - I'm not sure I'm using the correct term; I wrote it down earlier on - behaviour based. In this country education is always touted as the vehicle for changing behaviour, or at least one of the most important vehicles, and we invest a lot of money on education at all levels of government. Having one of the most literate populations in the entire world, and one of those most able to use all the new systems of communication and one considered one of the most open in the world, where are we falling down?
Mr. Schilder: There are several questions there.
I think you're trying to change the behaviours of the individual instead of changing the underlying conditions that provoke behaviour. You don't have to live with the fact that if you walked in front of the Château Laurier with your spouse last night, holding their elbow as you crossed the street, you would be screamed at by three guys in a car, ``Faggots!'' And if you responded, you could have engaged in a major physical abuse situation. You don't have to deal with that kind of profound hostility.
I think what you have to get in this country is to change the underlying conditions and attitudes of the population as a whole, which support the health of all the population. The economic realities of a gay relationship are one issue, but supporting the environment in which those relationships try to exist is another.
Mr. Volpe: I was addressing the financial economic one just because that's the one you raised.
Mr. Schilder: The thing is there's an assumption that, say, gay men in particular are very affluent, which is a myth. If you study the profiles of the gay male community, they're usually in low-paid service jobs or something of that nature.
The fact is that many of them can't plan a future together, because they're are always... If your relationship is a business relationship, it's hard to form a relationship that supports each other in the common identity of a relationship.
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I can't explain the divorce rates of the population. Maybe some of those people were not heterosexual. You can't use those comparisons because some of those people could be changing relations to enter bisexual or homosexual lifestyles. That's why relationships fall apart sometimes.
So I think it is a very poor comparison.
Mr. Volpe: It's a reference point.
The Chairman: Mr. Volpe, we're running out of time and I want to ask permission to go to maybe any single individual questions that any one member has before we wrap up with these witnesses.
Are there any single individual questions? No? Mr. Hill? Mrs. Ur? Mr. Volpe, you've had your chance.
Let me then take this opportunity to thank the witnesses for appearing. I am sorry for condensing the time, but we are trying to move along in this committee and get as much information as we can in the shortest time possible, due to our legislative timetable. So I want to take this opportunity to thank you very sincerely for attending and for submitting your resumés and briefs. They're certainly very interesting, very controversial, and we thank you very much.
We'll take a minute for our next set of witnesses.
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The Chairman: I'll take this opportunity to welcome the witnesses and to thank you for attending. As I told our previous group of witnesses, we are subject to a vote today at 5:30 p.m. The bells may go earlier than that, so I was trying to compress the time of the previous witnesses. When we go to our round of questioning I'll be very lenient with the answerers, but the questioners I may cut off a little early.
We have with us Debra McLeod from the Ottawa-Carleton Regional Police; Christine Villeneuve from Centre médical Ste-Anne; and Louise Binder from Voices of Positive Women. Who is going to start off? Christine...okay?
Ms Christine Villeneuve (Centre médical Ste-Anne): I'm from Ste-Anne's clinic.
[Translation]
Hello. I was asked to give this presentation after I wrote an article, which has been handed out to you printed on yellow paper. You have it in French and in English. The orange-coloured sheet briefly describes how the program began. I am going to read you my paper, which should take five minutes.
SOURCE is an Ottawa-Carleton community service for parents living with HIV/AIDS.
Since April, 1994, and up to September, 1996, we received 37 requests for services from parents, who may be broken down as follows: 31 mothers and two fathers living with HIV/AIDS; one HIV-positive uncle who is temporarily responsible for his two nieces; one HIV-negative grandmother who is responsible for her HIV-positive grandson, whose mother and father died as a result of AIDS; and finally, two HIV-negative partners. The number of children in the 34 families served was 45, including four who were living with HIV/AIDS and six others, under 18 months of age, whose positive or negative diagnosis was not yet confirmed. Two mothers, one father and one child have died since.
At the outset, our intention was to serve a forgotten group of the population infected with HIV, with a team of volunteers. We had defined this group as women living with HIV/AIDS and generally responsible for small children.
Actually we think that the structure of the services in place does not meet women's needs; in fact it even creates obstacles to getting medical attention and preventing illness. Once we had clearly identified women's needs and the diversity of their needs, we realized that the hours, the centralization of services and the mobility required to have access to medical services were not conducive.
Furthermore, we found that, while hospitals offer psychosocial services to both mother and child when the child is HIV-positive, they don't do so when the child is HIV-negative. The services available to the mother are then strictly medical and she is left on her own to cope with her psychological and social needs. This is a gap we have tried to fill.
We also noted that the time to take action was when the HIV diagnosis was announced. Often, among the people we deal with, women find out that they are HIV-positive when they are already experiencing a crisis or are vulnerable: pregnancy, birth of a child, announcement of partner's diagnosis.
When they hear a diagnosis that affects them personally, either from their family doctor or from Public Health, women find themselves alone and lost. Although they are not ill, they are quickly swept up in the world of medicine and research, which is complex and intimidating. Their psychosocial needs are forgotten about.
In Ottawa-Carleton, as elsewhere, the number of family physicians willing to receive HIV-positive patients is limited. These physicians are snowed under and, despite their open-mindedness and their humanity, their schedule hardly allows them time to answer the many needs of their patients.
Furthermore, since the number of clinics or doctor's offices is limited, their location, far from their patients' homes, often poses a transportation problem.
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Although our clients have many characteristics in common - single parenthood, isolation, fear of breach of confidentiality, poverty and, of course, being HIV positive - their actual situation and their operating mechanisms differ enormously. Over the past three years, we have helped two types of people and observed two tendencies among them. They are women who are drug users or associate with drug users, and women from model II countries.
Women who use drugs or associate with drug users take advantage of the services offered by the local community agency for HIV, and turn to SOURCE for respite and child-minding services. Some of them have already been taught about HIV and prevention, have assumed responsibility for themselves and become involved at various levels with groups of people living with HIV/AIDS.
Women from model II countries reject this type of service and prefer a personalized approach to a group approach. At the start, their requests are concerned with the imminent and pressing needs arising from the crisis situations caused by chronic fatigue and the side-effects of taking new medicine.
The first group of women prefer to prevent these crisis situations by making sure they get preventive respite. Women from model II countries are more isolated than those in the first group. We have managed to overcome the isolation of a few of these women by offering them transportation and child-minding services. We realize, however, that a large number of women in this group do not seek any of the services offered by agencies serving HIV-positive individuals, for fear of being identified as HIV-positive. Anonymity ensures confidentiality and only the physician is aware of their diagnosis.
Community prevention and education services, and specialized medical services for HIV/AIDS have had noteworthy success in information, rights protection, service development and research. Today, however, their visibility and their over-specialization have become obstacles to helping people living with HIV or AIDS.
We all know that the face of AIDS is changing. People living with HIV/AIDS who associate with drug-users or belong to ethnic minorities have lots of other psychosocial problems: drug abuse, violence, poverty, cultural integration and so on. HIV just adds to the list. Each individual has to make sublime efforts to overcome his or her situation.
From our three years' experience in providing services to HIV-positive women, we conclude that: 1) women who use drugs or associate with drug-users would be better served by people from such groups. Drug addiction interferes in HIV/AIDS education and prevention, and in the offer of services like the ones provided by SOURCE; 2) women from model II countries would be better served by people from multi-ethnic agencies. Cultural differences, particularly with regard to delicate issues such as sexuality and disease, are a tough obstacle, not to mention that the role of women in some communities does not allow them much power and is an impediment to any chance of help that comes from outside the family.
Finally, HIV/AIDS education can make a difference. However, the education and prevention model we have used up to now has reached its limit. We have to rethink our strategies.
Thank you.
The Chairman: Thank you.
[English]
Ms McLeod, from the Ottawa-Carleton Regional Police.
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Ms Debra McLeod (Ottawa-Carleton Regional Police): I will tell you a little about my job.
I run a crisis unit for the Ottawa division of the Ottawa-Carleton Regional Police. I do a wide variety of tasks, including critical incident stress debriefing, crisis intervention, stabilization assessment and threat assessment. One of my areas of specialty is violence against women.
The reason I'm here today is to talk to you about something that has come up within that context that is not really prevalent in the literature. It's something I kind of discovered accidentally. I'm not saying other people haven't discovered it, but it was certainly of concern to me.
One of the things I do in my practice is intervene in high-risk cases. Obviously I can't intervene in all of the cases. We average 175 domestic assault cases per month, so I only see those where the threat of murder, suicide, stalking or whatever lethality is quite high.
In part of my intervention and assessment with the women, I've found that when we look at the profile of men who abuse we generally find, in a certain percentage of this population, some aspect of mental illness. Then there is an aspect of criminalization. Then there are what we call behavioural characteristics from beliefs and attitudes. Some of that includes very macho traditional stereotyped attitudes, and they tend to see women as sex objects. There are some psycho-social dynamics such as fear of intimacy. Part of that behaviour, carried to its extreme of course, involves violence but it also involves avoidance of intimacy and some emotional torture. By that I mean affairs - engaging in high-risk sex.
Along with that violent personality profile is a certain percentage who like heavy stimulant drugs like cocaine, and share needles. They are at high risk to become HIV infected. They adopt a lot of attitudes such as ``I can tell if someone has AIDS''. I don't know how, but I've often heard men say that. They have that type of attitude and say ``That's not an issue for me'' and ``I'm not cutting down on my pleasure by wearing a condom''.
They go home, and the women they are living with, because of the dynamics of abuse, are isolated and often prevented from accessing any kind of support or health care-giver, even if it's a doctor, for injuries or anything along that line. The men often fear that she will tell someone, expose them, somehow get support, or their power within the home will be broken, so they will prevent that through isolation.
If the women accidentally come upon a health care provider, they are often ashamed of the abuse and don't really wish to discuss it. They may fear the consequences of discussing it or find that health care providers give the instant prescription ``Well, you've just got to leave'', without understanding the dynamics or the risk involved in leaving, which is a very complex process.
We know that risk to women elevates 80% upon separation. Most of the women killed by their partners have been murdered after they actually have left and have had a restraining order in effect. The women are well aware of that. They have been threatened and their focus is on survival. It's very difficult for women with no power in the home to ask their partners to wear condoms, discuss birth control in an equal and egalitarian manner, or any type of issue like that.
What we see is a population that is becoming not only injured... The women who I feel are most at risk are in the age group of 25 to 45. These women are generally outside of the mainstream to some extent. They may have been living with violence or in a violent relationship for some period of time. The justice system, for whatever reason, has generally failed women who are in chronically abusive relationships, despite the recent changes in laws. That's a whole other issue I won't get into.
The other dynamic I wanted to talk about relates to part of the issue of not asking the right questions when we're involved with the women, talking with them and educating them. One of the things we have to ask when we do the risk assessment as professionals is not only whether they have been hit, slapped, pushed or shoved - all of this type of thing - but also whether their partners are needle users.
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One of the interesting dynamics we find with women - and there's a conference coming up in December that might be of interest to some people here - is that there's a strong link between substance abuse and women who are being abused in the home. When we think about how to survive this kind of relationship, one of the ways is to use something. You have to alter your reality in some way.
If your abusive partner is a substance user you will often, just to keep the peace or to keep your own sanity for a second, start using something. If he's an alcoholic, you may choose to drink along with him. If he's a cocaine user, crack smoker or whatever, you will also adopt that habit. This puts those women living in violent relationships at double risk. I think this is one issue where we have to get sensitized, because I feel there's going to be an extremely rapid rise of infection within that population. That's my own guess.
I'll stop there. I could talk for about three days.
The Chairman: Thank you.
Louise Binder is the chair of the Voices of Positive Women. We would ask you to proceed.
Ms Louise Binder (Chair, Voices of Positive Women): Thank you very much for the opportunity to present today on behalf of Voices of Positive Women.
For those of you who don't know about our organization, we're an Ontario community-based organization run by and for HIV-positive women. Primarily we provide support, counselling, a treatment fund, public education through our speakers bureau, and practical support for women at home.
I am the chair of that organization and I have AIDS. I'm a lawyer by training and have been a human resources professional for approximately 20 years by experience.
I will briefly cover the four topics of statistical data about women and HIV and AIDS, statistical data regarding women and poverty, information about the costs of living with this disease, and some recommendations that I hope you will take into consideration.
In my submission, women with HIV are growing in numbers in Canada. They are socio-economically more disadvantaged to deal with this disease than their male counterparts. It's extremely expensive to live with HIV and also to be able to avoid it. Therefore, women are at greater risk of infection and are more susceptible to illness, morbidity and death than their male counterparts. I think this is a little-understood area, and it's only starting to become understood now as the numbers are growing.
Unfortunately, statistical data regarding the number of women with HIV infection are unreliable since there is delayed reporting and under-reporting of women with this disease. In fact, we're basically invisible for the most part in society, other than the few of us who feel safe enough to speak out.
But there are some statistical data available. The World Health Organization, for instance, predicts that by 2000 there will be 15 million women around the world infected with this disease, of the total 40 million it predicts will be infected. Of those women, 4 million will have already died of AIDS. Presently, women account for 42% of the 21 million adults living with HIV.
The absolute numbers in Canada are still, thankfully, small for women with AIDS. We don't actually know the number of women who are HIV-positive. That study will be undertaken shortly. But we do know that although the absolute numbers are small, the trend in North America is becoming startlingly frightening for women.
For instance, in Ontario 20% of the newly diagnosed cases are women. That's up sharply from 5% a few years ago. In British Columbia, 25% of the women testing positive since June 1994 were tested in the last year. Only now are we starting to really see the female HIV population. In the United States, AIDS is now the third leading killer of women between the ages of 25 and 40.
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To give a personal example from Voices of Positive Women, we now have 220 members. That number has doubled in the last year. Approximately half are from Toronto, half from other parts of the province. We began in 1991 with approximately 30 women. We're presently receiving three new calls per week from infected women. Toronto's People With AIDS Foundation, which only serves Toronto, has 187 women using its services. Some of these overlap with Voices, but many do not.
Therefore, this is not a disease affecting only one segment of our population. It's always been true that it has been throughout the population in Africa and in other parts of the world, and it's rapidly becoming true in North America. As the incidence of infected women increases, I submit that the incidence of heterosexual men becoming infected - at least, self-defining heterosexual men - will too, leaving no one in the population untouched.
My own situation is, I think, a good example of that. I was a married woman for eight years in what I believed to be a monogamous relationship, and I was infected with this disease. If that's high-risk behaviour, then I think all of us are at risk as far as this disease goes.
I'd like to talk a little bit about women in poverty. A clear, direct link has been shown between socio-economic status and the incidence of HIV infection and morbidity and mortality from AIDS. It's well known that women as a class are economically disadvantaged compared to men, and similarly that persons with disabilities as a class are poorer, less often employed and more dependent upon the social safety net than Canadians without disabilities.
At the same time, that social safety net is being eliminated in many places, with severe cuts in many provinces to welfare, transportation services for the poor and the disabled, pay equity for women, health services in hospitals and in home care, and low-income, cooperative and non-profit housing. As well, there has been an increase in the privatization of public housing.
In addition, some provinces are redefining the definition of disability so that many people who are truly disabled will not be able to actually receive social assistance.
There are many statistics about working women. Eighty-six percent of women working in the service industry have part-time or precarious jobs, and many women earn poverty level wages. On average, women who work full-time earn 30% less than men. Women are 70% of the part-time workforce.
Women also constitute 60% of unemployment insurance sick benefits claimants, because they are less likely to enjoy workplace sick leave plans and need unemployment disability benefits. This statistic also suggests that women are less likely to enjoy other workplace benefits such as extended health care coverage or long-term disability benefits, which provide assistance in coping with this disease.
Furthermore, 58% of women with disabilities live on less than $10,000 annual income and 23% actually live on $5,000 a year. How, I can't imagine.
Women face a significantly higher risk of poverty than men: 18.1% of Canadian women live below the poverty line while 13.4% of Canadian men are in that situation. Informal inquiries at AIDS organizations in Toronto make it clear that approximately half of the women they see are on social assistance and many also indicate they are poor or just managing financially.
But in addition to the economic disadvantage, there's also a tremendous social disadvantage for women in terms of staying well with this disease, and there's also the risk of infection. To some extent, that was referred to by the last speaker. Approximately 50% of HIV-positive women are infected by unprotected sex with a male partner. That's generally not known, and the fact of the matter is that because of the power relationship women are unable to negotiate safer sex practices with their partners.
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This can lead not only to infection; it also leads to re-infection, which is a double risk for the woman and in fact lowers her immune system even further. But there's little that women can do.
It also isn't well known that women are biologically more susceptible to infection than men are. Current research suggests the probability of transmitting HIV from an HIV-infected man to a non-HIV infected woman is 22%, and from an HIV-infected woman to a non-infected HIV man it's 9.3% over a prolonged period where barrier precautions are not used.
So we therefore have a segment of society that is one of the fastest growing in terms of infection rates and is among the most socio-economically disadvantaged in the ability to deal with the incredibly high costs associated with staying healthy with this disease.
I'll tell you a little bit about the costs. It's impossible to state a general dollar figure about what it actually costs to live with this disease. It varies, depending on so many factors. It depends on your health status, the province you live in, whether you live in a rural area or in an urban area, whether you have a private insurance plan, what that plan covers and what treatments you're taking.
But we do know some things. We know that in order to stay healthy with this disease you need a healthy diet, adequate exercise, housing, lack of stress, good medical care and vitamin and mineral supplements. You need prophylactic drugs to avoid opportunistic infections and anti-retroviral drugs to try to keep down your viral load and to keep your immune system up.
This costs a lot. I'm just going to give you examples from my own life. I spend approximately $350 a month on vitamin and mineral supplements alone. Nobody reimburses me for any of the costs of those drugs. I also take a prophylaxis for two diseases, the herpes family of viruses and pneumonia. That costs me approximately $400 per month. I'm also on an anti-retroviral drug cocktail of three drugs that costs me $1,130 per month - and I'm basically considered, at this point, reasonably healthy with my 112 CD4 cells.
For instance, I know people who've spent $5,000 to get an eye implant because they were getting cytomegalovirus retinitis, a disease that blinds. No one covers that. And it doesn't even last a year, if it works.
If you even think about the cost of healthy eating with fresh proteins and green vegetables, it's expensive. Adequate housing is expensive, as is warm clothing. This weather is very bad for us. And transportation to and from medical appointments can be a serious expense, especially for women living in rural areas who have long distances to travel to obtain treatment.
I haven't even begun to talk about families, especially those where the child or spouse is also infected. We know there are a lot of those families. I know a lot of those families.
Ten percent of the families living on an income below $20,000 are headed by a single female parent. What about child care so these women can work? And that's on the assumption that they can get a job, because in addition to the general economic problems we have in the country, they face gender discrimination, family status discrimination and AIDS phobia, not to mention the cost of dealing with other infected individuals in their family. So given the stress that these women face in their lives, I'm amazed, frankly, that as many of us survive as long as we do.
What would I recommend? I'd recommend a few things.
I take Mr. Volpe's earlier point that we have not refused to renew the national AIDS strategy. However, at this time I think we really need a commitment to that renewal. I take his point that it isn't actually going to end until March 1998, but a lot of research has stopped in this country as a result of the fact that researchers are concerned about starting long-term research projects. We don't want this left all to the drug companies, because they will research what they can make a lot of money on, not things that are necessarily good for us and cost-effective for our system.
.1710
So I would ask for an increase in that funding and I would ask that you permit those of us who are infected and directly affected to decide how the government should allocate these funds. We really do want to be part of the solution to this problem.
Please don't discontinue or reduce the Canada pension disability benefit. We need that money desperately to live.
We'd like to see amendments to the disability tax credit so it's less stringent than the present ``activities of daily living'' definition. You basically have to be unable to dress or feed yourself to be able to get that tax credit.
We would like to see health transfer payments to the provinces tied to their record of enforcement of the Canada Health Act, particularly provision of treatment access to catastrophic illness groups.
We'd like to see federal standards for all social programs, such as welfare, shelters, child care and support programs for people with disability. We would love to see federal standards for disabilities, and we would like to see a federal government commitment to a national child care program.
As a Canadian citizen, what would I ask? I would ask that every Canadian recognize our international and national responsibility to all of the people who have AIDS - men, women and children. Recognize that this disease potentially affects everyone in Canada and that people with this disease deserve the same treatment as any other group of people with a catastrophic terminal illness. We deserve nothing less.
Thank you very much.
The Chairman: Thank you very much. I allowed you a little more time.
Ms Binder: Thank you.
The Chairman: I'll now go to our question round. As I said, we may run out of time, so I'm going to ask people asking questions to keep that in mind, and of course I'll ask you to keep that in mind also.
Mr. Dubé.
[Translation]
Mr. Dubé: Thank you. I have a single question for Ms Villeneuve, which will reveal my lack of knowledge about the topic.
You mentioned ``HIV-negative''. That struck me. What do you mean by that? We understand what HIV-positive means, but what does HIV-negative mean?
Ms Villeneuve: Children born of HIV-positive mothers must be tested at birth to see whether their mothers' HIV has been transmitted to them. When the test is negative, they are diagnosed as HIV-negative.
Mr. Dubé: So they are not carriers.
Ms Villeneuve: That's right.
Mr. Dubé: Then, you mentioned model II countries. I think I know what the answer is, but I want to be sure.
Ms Villeneuve: These are the countries in which HIV is transmitted mainly heterosexually, that is, the African countries and Haiti. I talked about women from different ethnic backgrounds who come from these countries, which are designated as model II countries.
Mr. Dubé: Actually, some people say that AIDS in those countries is different. Is it the same disease in Africa? Maybe I have been influenced by people who don't know much about the issue, but in the early days we were told that it was a different illness in Africa.
Ms Villeneuve: Please remember that this is not my specialty; I am a social worker, not a medical researcher. But it's a fact that there are several types of virus. It seems that HIV-2 is predominant in the African countries, whereas in North America it is mainly HIV-1.
Apparently there is a difference between the two. In particular, the data seem to indicate that the incidence of HIV-2 transmission from mother to child is less frequent. Likewise, people with HIV-2 seem to live longer. But I couldn't confirm that.
Mr. Dubé: The other two witnesses may have been reassured by Mr. Volpe's comments about an aspect they talked about. But there is another aspect we have to talk about, namely the financial aspect.
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There nevertheless is the reality experienced by the provinces. Since what the federal government has called the Canada Social Transfer, which is made up of three funds put together, the health fund, the post-secondary education fund and the social assistance fund...
The other day, I was attending a meeting of the Finance Committee where some groups were saying that health care was the area that had been hardest hit in most of the provinces and that the provincial governments, when making their choices, were submitting to certain pressures. Curative care is what has suffered the most serious consequences.
Being in the opposition, my role in this respect is easier. But I wouldn't like to take advantage or to abuse my role as a member of the opposition by playing a political or electioneering game. The issue is too important. It remains, however, that as a member of the Health Committee I am very concerned about this lowering of funding for care provided to the public. I can't do otherwise. It is not so much a question I am asking as a comment I am making so as to approve and support you in your efforts.
These groups came to tell the Finance Committee that absolutely no further cuts must be made, that at least the current level had to be maintained. The cuts for Quebec were about $2 billion overall for the three funds. We have to stop here. I wanted to give you an opportunity to influence our colleagues from the party in power in this regard. I don't know whether you want to give more explanations.
[English]
The Chairman: Would one of the witnesses care to answer that?
[Translation]
Ms Villeneuve: What's certain is that we want to receive more money.
Mr. Dubé: I am still on the Finance Committee and I am a former member of the Human Resources Development Committee. I wouldn't like to throw numbers around, but we mustn't under-estimate the income tax credits or deductions that the federal government already allows, and likewise the provinces too. It is a less visible form of assistance, but one which is nevertheless significant.
If they get rid of the Unemployment Insurance fund, if they get rid of the expenditures related to administration, there remain, where tax credits are concerned, charitable donations, income tax deductions and deductions for research, which represent almost the equivalent of the federal government's expenditures.
If they want to get rid of deductions, there will also have to be a limit. I think, though, that it is easier to sell politically because people absolutely do not want any tax increases. This is an idea that could be explored because, since this action is less visible, the taxpayers' reaction isn't so strong. You are right to talk about that.
I could ask other questions, but since time is passing, I'll give the floor to my colleagues. Thank you for your presentation, which was touching and important. I know that the members from the opposition who are members of the Health Committee and the Human Resources Development Committee are very sensitive to it. I witness this every day. They are among the most positive members with regard to your demands. The problem is that further arguments must be developed. We have to convince our respective colleagues, who unfortunately are not here.
[English]
The Chairman: Thank you very much.
Before we get into a discussion, Dr. Hill, you're next.
Mr. Hill: Debra McLeod, you spoke eloquently about family violence. You described the typical dynamic. What you omitted, though, is what we should do now. You spoke of the laws that have been changed that aren't effective. From your close-up perspective, what should we do now, as legislators?
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Ms McLeod: Address domestic violence more effectively?
Mr. Hill: Just pick whatever area of the scenario you painted and say what would improve this.
Ms McLeod: Okay. There are two aspects that I would like to address.
I'll give you the case example of one of the women I worked with, where I actually discovered this dynamic first. She was living with an abusive partner. She had called the police. Nothing was done. It was prior to the mandatory charging policy. She was too frightened to proceed with the charge. He was still beating her after the mandatory charging policy. Charges were laid. Two days later, he breached - he broke the conditions not to go near her - and he reassaulted her. She called the police. The police came and rearrested him. He went back to a justice of the peace and was released again. He breached 13 times in a row and was released without doing one day in jail. The message to this woman was very clear: the justice system cannot help me.
This woman at that point began doing cocaine with her partner. And if I were her, I probably would have used some type of mind-altering substance as well in order to live through that relationship. There were times when witnesses called the police when she was being assaulted on the street in front of her house, when her children were witnessing. A police officer in fact arrived on the scene on time to witness the assault. Charges were laid. He was released again.
I don't know what it takes sometimes to convince justices of the peace about the dynamics of domestic violence. There are currently no provisions for training around dynamics, around threat assessment, around lethality scales.
Mr. Hill: So we need that.
Ms McLeod: We absolutely have to have that.
Mr. Hill: Mandatory sentences for this type of -
Ms McLeod: Not only mandatory sentences, but if someone is arrested and placed on conditions... Let's say I'm the abusive partner. I assault her; after my arrest I'm placed on conditions, which I sign and acknowledge, which say not to go near her. I immediately disregard that order, reassault her, threaten her, stalk her - whatever. I'm arrested again and I'm back out on the street after signing another piece of paper. I've suffered absolutely no consequence.
The message to me as an abuser is very clear: big deal, nine months down the road I'll go to court; if I can convince her over a nine-month period that it's more dangerous for her to proceed or testify against me, I've got a good chance here.
Mr. Hill: Without going farther - I'm sure you could go farther -
Ms McLeod: Sorry, I'm very passionate about that subject.
Mr. Hill: [Inaudible - Editor] ...this tomorrow, so you might as well give all the evidence you've got.
To Louise Binder, if I could, I admire you so much for being so brave in telling your story. I'd like you to know that directly.
You said that AIDS is under-reported in women.
Ms Binder: Yes.
Mr. Hill: I presume you meant worldwide.
Ms Binder: Worldwide and in Canada. Worldwide, yes; and in Canada particularly - North America particularly.
Mr. Hill: I'm not sure I understand that, because to my understanding if you get a positive test, it's recorded. This is an automatic process. All the labs in Canada are hooked into the reporting system.
Ms Binder: Right.
Mr. Hill: So if you know you're HIV positive, how does that go under-reported in this society of ours that has good computers?
Ms Binder: Well, in fact, there are many women who don't know they're HIV positive.
Mr. Hill: Okay, that's the issue: not knowing.
Ms Binder: That's right. I was HIV positive for probably seven years and had no idea at all.
Mr. Hill: But you're not suggesting that those who know go unreported.
Ms Binder: No. There is a reporting, but it's very delayed reporting, as I understand; it's very slow to come. And there is certainly under-reporting, because there are many women walking around with this virus who don't know it themselves.
Mr. Hill: Okay, that's fair. That clarifies for me what you meant. Thanks.
Ms McLeod: Could I just add something to that? I know that a lot of times women's symptoms will mask as other things - fungus infections and all kinds of other symptoms. These are very routine symptoms with women for MDs to treat. And often a woman - especially a married woman supposedly in a monogamous relationship - would never dream to take an AIDS test. How do you come to that?
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Mr. Hill: There are others reasons. Of course, you don't want to make the diagnosis. There are other societal reasons not to explore this. But that's another issue.
Ms Binder: But that's a serious issue for women, because we don't want our doctors mollycoddling us. We want them finding out what's wrong with us.
But you're quite right. When you talk to a woman like me about having an HIV test, you're not just telling her that she might be very sick, you're also telling her she might be or has been in relationships with people who didn't care about her, who didn't care enough about her health to protect her. Particularly when a woman is still in that relationship and she's economically dependent on that person, what is that news going to do for her? She probably won't be able to get out of that relationship anyhow. She will be with someone she has no power to negotiate the possibility of not being reinfected with, and economically she won't be able to leave that person, so you're telling her news she won't be able to do much about and will be devastating to her and her whole world. But doctors need to get past that.
The Chairman: Mr. Volpe, Mrs. Ur.
Mr. Volpe: I don't have much to say or to comment on. I found the presentations most instructive. Obviously it's not difficult to be emotionally engaged in the stories you tell, because it provides a dimension of society that we have a tendency not to look at and not to want to accept. I agree in that regard.
Given that context, the only one who can actually generate a test where there's HIV incidence is the woman herself, who must ask the doctor to do it. It's not the doctor who's going to say you should be tested on it. I realize there's a great obstacle for the woman, but she's still going to have to ask for the test. Or am I wrong?
Ms Binder: I think you're wrong, with all due respect. It might be that she goes in and says, I think I've been put at risk and I would like you to test me. On the other hand, let me give my own scenario again. It's the one I know best.
I went to the doctor for more than six years complaining of chronic vaginal yeast infections, of lower abdominal problems, a lot of things that admittedly could be symptoms of other things, but we ruled those out. After six years you've kind of gone down the list for those, but at no point did this woman doctor ever suggest the possibility of an HIV test. If it had been anything but HIV... She tested me for ulcers, she tested me for 95 million other things.
I think there is a responsibility on doctors - after they do due diligence on other potential medical causes - to say these are also symptoms of HIV, and I'd be willing to test you for this if you'd be willing to have the test. They should learn proper pre- and post-test counselling. My pre-test counselling was: I don't think you have it - 2% chance - but I'll do it if you want. My post-test counselling was a telephone call when I was at home over the Christmas holidays to tell me that I was HIV positive.
Would you call somebody over the phone to tell them they have cancer, leukaemia or tuberculosis? Absolutely not. She didn't know what would happen to me. I could have killed myself. I'm not being melodramatic. I could easily have taken my own life at that point in time.
So doctors do have a big responsibility here, and I think they have a responsibility to be proactive, not just reactive. I'm not the one who knows that these are symptoms of AIDS. Obviously I didn't know that and I only came to it after everything else was exhausted. But I think doctors should be proactive in this area.
Mr. Volpe: Thank you.
The Chairman: Mrs. Ur.
Mrs. Ur (Lambton - Middlesex): I too want to comment on your presentation, Louise. It's a strong presentation and it must have been difficult. It's a learning experience for me to listen to you tell your story here today.
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My one question is this. We've put dollars upon dollars upon dollars into AIDS strategy funding and for education. Obviously it's not doing a thing. The numbers are going up. What can be done differently? How can we attack in a different way?
Ms Binder: Once you announce the strategy and invite me to come and help you carve up the pie...
Mrs. Ur: The marketing strategy - you know the dollars that have been spent on education and that. Groups upon groups have come here and have done all these wonderful things and have produced these wonderful brochures, but the numbers are still going up and up and up.
Ms Binder: They are and they aren't. I think in gay men the numbers have started to plateau. I hope we won't get a second wave with a new generation of gay men. I hope they will have learned from the last generation.
The problem is that the groups you have not really targeted are those where there's growth in this disease, including women. There hasn't been much education targeted to women, frankly, in this area. I do it by going out and trying to educate them myself in public fora wherever people will let me come and talk, but I think that maybe we should look at the change in the demographics of this disease and reconsider where we've been putting our education dollars.
What we need to do, for instance, for women is educate in the places where women gather, in women's shelters and other places where women gather. We haven't really focused in that way, for instance. That's a pretty simplistic answer. I'd need a lot longer to help with this one, but I think this is really the issue.
Mrs. Ur: Thank you.
Ms Villeneuve: May I add something on this question? I think specifically what Ms Binder was saying is that the new faces of AIDS now...we're talking about drug addiction and we're talking about women who have a diversity of problems. We're talking about HIV being one more issue to have to deal with next to poverty, next to violence, next to drug addiction.
We have so far been aiming at a group of people infected with the virus who were basically homogeneous. They were white males, educated, living in a geographically limited area. Most big towns contain a gay community that is well structured and organized. We're talking now about a diversity of clientele, and we have to deal with the main issues that they have to deal with and add the question of HIV to these issues. This means giving the training as much as possible in the shelters for women, going into the ethnocultural community and arming them with all the HIV education they need. For drug addiction, in any centre, we have to help the people who are specialized in these skills to add HIV to their teaching. I think that's the new reality today.
The Chairman: Thank you very much. I want to take this opportunity to thank the witnesses.
Mr. Volpe, you had one more question, did you?
Mr. Volpe: I know we're being called for the vote, but I wanted to get an observation from one or all three witnesses, now that you've introduced the topic of a new segment of society that's at risk, which is an issue that hasn't been addressed in previous AIDS strategies or studies.
This committee heard, about two meetings ago, that the incidence of HIV/AIDS in Canada broke down - please allow for memory lapse here; I think I'm within a percentage point or two - into something to the effect that 72% of all HIV/AIDS cases were homosexual men, and with the inclusion of bisexual men the figure was 78%. The greater incidence, about 78%, is with homosexual and bisexual men. The percentage that was attributable to drug injection, I believe was somewhere around 7%; I could stand to be corrected.
Comparable figures in the United States were that only 42% - and that represented a drop of new HIV/AIDS cases since 1992 or 1993 - were attributable to homosexual/bisexual behaviour and the rest would have been caused by drug injection.
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We asked for some of these figures to be verified because it seemed the discrepancy was rather large, but if the figures of 72 to 78% are more or less in the ballpark, do we run the risk of erring so much on the side of caution that we would alarm a segment of society that doesn't need to be alarmed at this stage?
Ms Villeneuve: The entire society is at risk. Ms Binder is the first example of it. We are all at risk.
Ms McLeod: We have to alarm them.
Ms Villeneuve: Yes.
Ms McLeod: I'm sorry to interrupt.
Ms Villeneuve: No, go ahead.
Ms McLeod: I wanted to say that a lot of the AIDS strategy education has been successful. Five years ago I had an opportunity to live with a bunch of young women from 17 to 20 years of age. They had been sexually active for probably six to eight years. Not one of the women - and there were about 40 of them, and we talked frankly about this issue - had ever engaged in sex without a condom, which to me says that the education in those schools, which is where they got it from, was highly successful. It's part of their culture and part of their world that's automatic for them now.
What we're missing, though, is other populations. We're missing women in their thirties and forties, women in monogamous relationships, women in violent relationships, drug users, immigrant -
Ms Villeneuve: Alcohol. Drinking alcohol is a risk. You're losing all your sense of responsibility and common sense at this point and can end up with unprotected -
Ms Binder: I wouldn't trust those numbers too much because, remember, women generally are diagnosed much farther into the disease than men. So I actually think we have, unfortunately, a much larger population of women out there who are infected but aren't yet aware of it. They often aren't diagnosed until they're sick, which can be seven to ten years into this disease.
So I wouldn't trust those numbers. They were true seven to ten years ago, in a sense. I think they may not be really true now.
Mr. Volpe: Thank you. I was looking for your reaction. I'm glad you gave it to me.
The Chairman: Give the parliamentary secretary all the work you can give him. Work him over. Thank you very much for your very thoughtful presentations.
We stand adjourned to the call of the chair.