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HIV/AIDS and Discrimination: A Discussion Paper

The Joint Project on Legal and Ethical Issues Raised by HIV/AIDS of the Canadian HIV/AIDS Legal Network and the Canadian AIDS Society released a discussion paper on HIV/AIDS and discrimination in 1998. ⁽¹⁾ The paper shows that, more than 15 years after the beginning of the HIV/AIDS epidemic, stigma and discrimination remain pervasive in the lives of people with HIV/AIDS and populations affected by HIV/AIDS. In addition, it documents the impact of stigma and discrimination on the health and well-being of people with HIV/AIDS and populations affected by HIV/AIDS, and recommends basic elements of a concerted effort to prevent, redress, and eliminate HIV/AIDS-related stigma and discrimination. We reproduce a slightly edited version of the paper's executive summary.

Why a Discussion Paper on HIV/AIDS and Discrimination?

In 1995, during Phase I of the Joint Network/CAS Project on Legal and Ethical Issues Raised by HIV/AIDS, over sixty individuals and organizations identified discrimination as one of eight "top priority" legal and ethical issues raised by HIV/AIDS in Canada. Three years later, in January 1998, participants in a national workshop on discrimination and HIV/AIDS confirmed that:

• discrimination against people with HIV/AIDS is still pervasive in Canada;
• discrimination touches every aspect of the lives of people with HIV/AIDS;
• discrimination is becoming more subtle and harder to redress;
• discrimination has a significant impact on the health and well-being of people with HIV/AIDS and of populations affected by HIV/AIDS.

What Are the Issues?

First, although human rights statutes in Canada provide some essential basic protections for people with HIV/AIDS and populations affected by HIV/AIDS, a description and analysis of the experience of stigma and discrimination in the context of the HIV epidemic cannot be limited to attitudes and actions that are actionable under human rights law. Discrimination in the context of the HIV epidemic encompasses a broad range of attitudes and actions, including:

• stigmatizing attitudes as well as discriminatory actions;
• direct, indirect, and systemic forms of discrimination;
• anticipated discrimination as well as actual discrimination;
• legal forms of discrimination as well as illegal forms of discrimination;
• the private sphere as well as the public sphere; and
• stigma and discrimination that is related to HIV/AIDS (eg, based on sexual orientation or drug use) as well as stigma and discrimination that is directly a result of perceived or actual HIV status.

Second, the nature of the HIV epidemic in Canada in 1998 and of Canada's response to the epidemic have a bearing on stigma and discrimination as they are now experienced by people with HIV/AIDS:

• the epidemic is expanding, particularly among marginalized populations who typically experience many layers of stigma and discrimination - not only stigma and discrimination based on HIV status - and have few resources or little support in seeking redress;
• the restructuring of the health system and the devolution of authority for programs may result in fewer programs with a specific focus on HIV/AIDS, resulting in systemic neglect of needs that are unique to or disproportionately found among people with HIV/AIDS or populations affected by HIV/AIDS;
• the advent of protease inhibitors and combination antiretroviral therapies has been accompanied by new forms of discrimination, including restrictive assessments of disability, greater visibility at work and vulnerability to discrimination at work, inequitable access to therapies among diverse populations, and failure to observe guidelines regarding informed choice in HIV testing and treatment.

Third, while there are common elements in the experience of stigma and discrimination among the diverse populations affected by HIV/AIDS, there are also features that are specific to particular populations. Any response to stigma and discrimination in the context of the HIV epidemic must identify and address the specific ways in which stigma and discrimination affect gay and bisexual men, transgendered people, drug users, Aboriginal people, sex workers, prisoners, women, heterosexual men, children and their families, and youth.

What Does the Discussion Paper Contain?

The Discussion Paper reviews:

• definitions of discrimination that are current in Canada and internationally;
• the nature of stigma, discrimination, and vulnerability in the context of the HIV epidemic;
• stigma and discrimination that people with HIV/AIDS currently experience in their families and communities, at work, in housing, in health-care settings, in obtaining insurance coverage or benefits (particularly private medical and disability insurance), and in policies restricting travel or immigration;
• specific patterns of stigma and discrimination that populations affected by HIV/AIDS experience, and the impact of stigma and discrimination on their health and well-being in the context of the HIV/AIDS epidemic; and
• various ways to respond to stigma and discrimination, including education (public education, professional education, and focused education), redress (human rights law, the Canadian Charter of Rights and Freedoms, and other forms of legal or procedural redress), and advocacy.

What Are the Goals of the Discussion Paper?

The goals of the Discussion Paper are:

• to show how pervasive stigma and discrimination are in the lives of people with HIV/AIDS and populations affected by HIV/AIDS;
• to document the impact of stigma and discrimination on the health and well-being of people with HIV/AIDS and populations affected by HIV/AIDS; and
• to recommend basic elements of a concerted effort to prevent, redress, and eliminate HIV/AIDS-related stigma and discrimination.

The Discussion Paper does not presume to be definitive in its description of HIV/AIDS-related stigma and discrimination, or in its recommendations as to how to respond to such stigma and discrimination. Rather, it is hoped that the Discussion Paper will stimulate:

• increased awareness of HIV/AIDS-related stigma and discrimination;
• further documentation of stigmatizing or discriminatory attitudes, actions, or systems;
• further analysis of the complexities and effects of HIV/AIDS-related stigma and discrimination;
• further discussion and deliberation on how to respond to HIV/AIDS-related stigma and discrimination; and
• increased resolve to address HIV/AIDS-related stigma and discrimination.

What Does the Discussion Paper Conclude?

The Discussion Paper concludes that, in addition to being unwarranted and unjust in most circumstances, discrimination against people with HIV/AIDS or populations affected by HIV/AIDS has serious consequences. These include (but are not limited to):

• vulnerability to HIV infection, particularly among young gay and bisexual men, drug users, Aboriginal people, prisoners, and sex workers;
• failure to prevent HIV infection, both among populations identified as being "at risk" for HIV infection and among populations not so identified;
• stress associated with HIV status, secrecy about HIV status, and social isolation because of HIV status - all adversely affecting the psychological health of people with HIV/AIDS;
• harassment from employers or colleagues; insufficient accommodation of health-related needs at work; reluctance to claim medical or disability benefits for fear of being harassed, laid off, or fired; being laid off or fired;
• denial of housing by landlords because of HIV status, sexual orientation, or source of income;
• reluctance to access health-care services, because of stigmatizing or discriminatory attitudes and remarks;
• delayed diagnosis and substandard treatment for HIV infection and HIV/AIDS-related diseases and opportunistic infections;
• insufficient or no insurance coverage for disability or drugs;
• exclusion from or underrepresentation in research on HIV/AIDS, resulting in insufficient information on HIV prevention, care, and treatment in certain populations; and
• restrictions on travel to foreign countries.

The Discussion Paper further concludes that a concerted effort is required on the part of governments, human rights commissions, community and national organizations, professional associations, schools, workplaces, and researchers to prevent, redress, and eliminate stigma and discrimination associated with HIV/AIDS. The Discussion Paper recommends that a framework for action on HIV/AIDS-related discrimination be developed in the Canadian Strategy on HIV/AIDS, with specific provision for:

• community participation in designing, implementing, and evaluating policies and programs;
• staff, protocols, systems, and networks to gather information on stigma and discrimination, analyze information, develop policy, and promote change in policies and practice;
• specialized legal services for people with HIV/AIDS and populations affected by HIV/AIDS, and a network of lawyers and legal clinics offering such specialized legal services;
• reviewing and recommending reforms to legislation and law enforcement practices that have an adverse effect on people with HIV/AIDS and populations affected by HIV/AIDS, to human rights legislation and procedures, and to human rights policies;
• public education aimed at reducing HIV/AIDS-related stigma and at creating a supportive environment for people with HIV/AIDS and populations affected by HIV/AIDS;
• education and training to promote and foster non-stigmatizing and non-discriminatory attitudes and practices among professionals, particularly those who provide care to people with HIV/AIDS on an occasional basis;
• education for children and youth, both in the schools and through alternative peer-based programs sponsored by social agencies and community organizations;
• initiatives to address HIV/AIDS-related harassment and discrimination in the workplace;
• efforts to increase participation of underrepresented populations in research, in identifying research priorities, in designing and implementing research projects, and in the ethical review of research; and
• a plan to monitor and evaluate annually efforts to prevent, redress, and eliminate HIV/AIDS-related discrimination.

The Discussion Paper notes, finally, that many of the issues raised by stigma and discrimination have been treated in recent reports on specific aspects of the HIV epidemic, namely, HIV testing and confidentiality; ⁽²⁾ criminal law and HIV/AIDS; ⁽³⁾ gay and lesbian legal issues and HIV/AIDS; ⁽⁴⁾ women and HIV/AIDS; ⁽⁵⁾ children and HIV/AIDS; ⁽⁶⁾ HIV/AIDS and injection drug use; ⁽⁷⁾ care, treatment, and support of injection drug users with HIV/AIDS; ⁽⁸⁾ street-involved people and HIV/AIDS; ⁽⁹⁾ prisoners and HIV/AIDS; ⁽¹⁰⁾ Aboriginal people and HIV/AIDS; ⁽¹¹⁾ vocational and rehabilitation services; community-based prevention research; and research on HIV/AIDS and drug use. These reports, and their conclusions, recommendations, or guidelines, provide essential direction for policy and programs that will, along with achieving other objectives, reduce the extent and the impact of HIV/AIDS-related stigma and discrimination.

The Discussion Paper has been sent to a broad range of individuals and organizations active in HIV/AIDS issues and human rights, and their comments and input have been solicited. Currently, the Canadian HIV/AIDS Legal Network is assessing what activities need to be undertaken in the short, mid and long term to ensure that the recommendations in the paper will be implemented. In addition, info sheets on HIV/AIDS-related stigma and discrimination have been developed and will be disseminated and become available on the Legal Network's website. These fact sheets summarize the contents of the Discussion Paper in an easy-to-read format.

For further information, contact Ralf Jürgens at 514 397-6828 ext 223; fax: 514 397-8570; email: <ralfj@aidslaw.ca>.

Copies of the Discussion Paper can be retrieved at the website of the Canadian HIV/AIDS Legal Network at www.aidslaw.ca or ordered through the National AIDS Clearinghouse. Tel: 613 725-3434; fax: 613 725-9826; email: <aids/sida@cpha.ca>.

1. T de Bruyn. HIV/AIDS and Discrimination: A Discussion Paper. Montréal: Canadian HIV/AIDS Legal Network & Canadian AIDS Society, 1998.

2. R Jürgens. HIV Testing and Confidentiality: Final Report. Montréal: Canadian HIV/AIDS Legal Network & Canadian AIDS Society, 1998.

3. R Elliott. Criminal Law and HIV/AIDS: Final Report. Montréal: Canadian HIV/AIDS Legal Network & Canadian AIDS Society, 1997.

4. J Fisher et al. Gay and Lesbian Legal Issues and HIV/AIDS: Final Report. Montréal: Canadian HIV/AIDS Legal Network & Canadian AIDS Society, 1997.

5. C Hankins, L Hum (eds). Women and HIV National Workshop. Montréal, 13-14 March 1995. Montréal: McGill AIDS Centre, 1995.

6. RS Goldie et al. Children Born to Mothers with HIV: Psychosocial Issues for Families in Canada Living with HIV/AIDS. Toronto: The Hospital for Sick Children, 1997.

7. HIV/AIDS and Injection Drug Use: A National Action Plan. Ottawa: Canadian Public Health Association and Canadian Centre on Substance Abuse, May 1997.

8. . D McAmmond. Care, Treatment and Support for Injection Drug Users Living with HIV/AIDS. A Consultation Report. Ottawa: Health Canada, March 1997.

9. Canadian AIDS Society. Sharing the Energy: A National Workshop on Street-Involved People and HIV/AIDS. Ottawa: Canadian AIDS Society, 1995.

10. R Jürgens. HIV/AIDS in Prisons: Final Report. Montréal: Canadian HIV/AIDS Legal Network & Canadian AIDS Society, 1996.

11. See the three papers by S Matiation summarized in this issue of the Our Sponsors .

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